HOTHOUSE 2011

EXPERIENCE RESEARCH FINLAND | INDIA

contact
WHO CARES FOR THE CARERS: Insights to Design for Health Innovation
by Han Pham , Anamika Debnath and Anna Kulonen a Hothouse 2011 project for Intel | Swisscom | Brightsolid | Fjord
MSc Design Ethnography University Of Dundee Nethergate Dundee DD1 4HN Scotland August 2011 http://www2.idl.dundee.ac.uk/desethno/ Han Pham, USA han@designswinger.com Anamika Debnath, India anadenath@yahoo.co.in Anna Kulonen, Finland anna@persoona.fi

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I. INTRO
06 abstract 07 introduction 08 MSc design ethnography 09 hothouse 2011 10 clients

II. RESEARCH DESIGN

13 focus 14 need for research 15 questions 17 research plan 17 methods

IV. V. ETHNOGRAPHIC OPPORTUNITY INSIGHTS MAPPING

28 1 - basics 29 2 - affinitizations 36 3 - synthesis 39 ethnographic liquidity 40 ethno-speak 41 process map 42 tips & tricks 43 4 steps to actionable design research 44 design for the present: service mapping 46 discussion 47 service map closeup 48 design for the future: system mapping

VI. DESIGN APPLICATION

53 phase: who 58 phase: coping 63 phase: crisis 69 phase: commuinity 78 phase: self care

VII. CONCLUSIONS
85 conclusions at a glance 88 design for the present: insights 96 design for the future: insights 96 design principles 97 building on intel

table of CONTENTS

III. PLACE & PEOPLE

20 field topline 20 finland snapshot 21 india snapshot 23 research matrix

VIII. THANK YOU

99 thank you 102 bios

IX. APPENDIX
106 bibliography 108 question guide 112 participant list

Right now in the UK, there are 6 million family carers who are unpaid, saving the NHS 87 billion GBP a year ...

ON TI UC OD TR I. IN

Theres very little support for these people. What happens if this network went away?

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I INTRO

WHAT IF the world listened better... what would we learn?

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I INTRO

IN BRIEF

whatever be her external demeanor, she is being destroyed internally. Her brain is being destroyed internally which is not understood by those who are allowing it to happen because she is so convincingly natural that you wont understand. Till the time one day I found that she cannot read what you call clock. She cannot dial the telephone. Brigadier Bhattacharya

ABSTRACT
Right now in the UK, there are 6 million family carers who are unpaid, saving the NHS 87 billion GBP a year (close to the equivalent of the whole NHS budget). Theres very little support for these people. What happens if this network went away? (Personal communication with Dr. David K. Prendergast, June 8th, 2011) Leinbach (2002) proposes that designers, and by extension researchers, are not in the business of creating products but rather in the knowledge transfer business. In his view, design is a service that generates and transfers knowledge. Therefore design management is ultimately knowledge management and intellectual capital is the totality of human brainpower assets of an organization. In this report, we share how a small-scale, multi-site, ethnographic research project over a limited three-month time frame during the summer of 2011 led to the development of both insights and new opportunity mapping frameworks to understand how to design usable products and services for the expressed and observed needs of informal caregivers within India and Finland. In particular, we highlight our design research methods and how they helped us move from observations to business-ready contexts that provided relevant, salient, appropriate and actionable design scenarios for digital technology. Our research was conducted on behalf of Intels Health Research and Innovation group, the Technology Research for Independent Living (TRIL) Centre, and the University of Dundee Hothouse 2011 cohort which included our additional educational partners Swisscom, Fjord and brightsolid. The research was conducted in Finland, India and the UK, using a mixed methodology to study the lived experiences of informal caregivers across our field sites, as well as the support systems (civic, community, personal, formal or informal, in-person or online) that are emerging and evolving to care for the carers, and examined how these coping strategies may be supported, improved or augmented, individually or through the community, through the culturally appropriate use of digital technology. This report provides direct insights, stories and perspectives of the current expressed and observed caregiver needs and coping strategies within a design ethnographic framework to actualize those insights into clear design opportunities. The concept of ethnographic liquidity, or the ability to deliver value within and across an organization of multiple stakeholders and diverse backgrounds was a driving focal point of our work. The following report is designed to strike a balance between a deep social science grounding and a design-forward style in order to facilitate the necessary knowledge transfer for the research (and our participants voices) to be successfully understood, engaged and championed throughout the design process, leading to new ways of understanding, translating and amplifying the original perspectives shared to design not only for the present, but to help imagine the new health technologies of the future.

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i INTRO

hello.
THE BOOK, MASSIVE CHANGE, (MAU, 2004) BEGINS WITH AN ILLUMINATING PROPOSITION:
The twentieth century will chiefly be remembered by the future generations not as an era of political conflicts or technical inventions, but as an age in which human society dared to think of the welfare of the whole human race as a practical objective. Arnold J Toynbee, English historian (1889-1975) During the course of our Hothouse 2011 research project, which aimed to understand how to better design for the lives of caregivers within and across two very different cultures, we also received some incredibly practical advice from our client and mentor, Dr. David K. Prendergast of Intel on how to balance complexity, partial truths and need for certainties: You need to interrogate concepts like healing. Likewise you are going to have to figure out when / how to represent (or not) the resultant complexity or partial truths that you will encounter during ethnographic fieldwork to an audience that loves hard facts conciseness, and certainties. Theres loads of ways to do this - to make them smile, cry, or preferably both just dont bore them! (Thank you, David.) At once researchers within an academic setting and consultants to a multinational corporate partner, we knew we needed to strike a balance to succeed. The histories of anthropology and business have both encountered an interesting task of balancing (and battling) dualities: evaluating and valuating cultures and ideas; navigating (and indeed elevating) either objectivity or subjectivity; observing and being observed. The introduction and development of the area of design ethnography presents a more humanistic, exploratory methodology for gaining insights into the convergence of business, anthropology and design. It is a field that is rising in prominence along with new, collaborative methods of design variously called design thinking, user centered design, co design and more. This simultaneous emergence allows for some possible, innovative areas of convergence where the principles of design ethnography may help organizations (and designers) bring insights home from the field as well as drive new ways of designing and community-building through the organization and give rise to a more equitable and culturally-relevant model of co-design. This summer, our motley team of design researchers navigated the flooded streets of Kolkata, an ash cloud in Dublin, riots in both India and London, and a few surprise emergency rooms visits in the name of research we loved, and, about.. well, love. Informal caregivers live an incredibly rich and complex life caring for others in a way that is often rooted in actions that are constant and unseen. We were grateful to be allowed into the lives of those we met, and allowed to see, and to share what we witnessed. - Anna, Anamika and Han

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I MSc Design Ethnography

UNIVERSITY OF DUNDEES MSC DESIGN ETHNOGRAPHY: BRIDGING PEOPLE AND DESIGN

The first thing many of us are asked when they find out we are studying in Scotland is: Why DUNDEE? Its an easy answer. The University of Dundees Masters of Science in Design Ethnography, established by Dr. Catriona Macauley, was founded in 2009 as the first graduate program in the world in this area. As a joint program between the School of Computing and the Duncan of Jordanstone College of Art and Design, we were given a literal 24-hour access pass to think about the intersection of technology, culture, design and business. Entrepreneurs collided with product designers; a professor of fashion design rubbed shoulders with IT specialists and former journalists and we were asked to imagine the next wave of design research one that was not only rapid but rigorous, creative but grounded. As suggested, the advantages of a people-centered approach extend beyond the field to leverage real-world benefits within business. According to Gobe (2002), Corporations with EI (Emotional Intelligence) have an imaginative and innovative culture turned toward people, exemplified by the extra steps they take in knowing well and serving well the communities in which they operate. These extra step evinced by the ethnographic process can be as simple as defining the problem within the problem for companies interested in placing their products within a relevant social (and consumer) context: [Ethnographers] help reframe questions to make cultural implications implicit within the research questions: What are the unmet needs in spray cleansers becomes What does clean mean today? What are the values of home that are embodied by cleaning habits, routines, and preferences? (Denny, 2002). The application of understanding of materiality to the broader personal and social context is not new; its modern practitioners continue a tradition of uniting the tangible with the intangible. Tilley (2001) shares an example of a researcher in Indonesia using material goods as a medium to eliciting personal narratives: When Hoskins was interested in recording personal life histories in Sumba, Indonesia, she found that the only way in which it was possible to elicit this information was to get people to talk about things. Talking about things was a way of constructing, materializing and objectifying the self, for things contain and preserve memories, embody personal experiences. The betel bag contained ancestral words, the spindle was a lost husband, the drum evoked female receptivity to a male voice. Both design and ethnography seek to be evocative and informative, ideally coupled in an insightful and relevant way that can illuminate and better how we live and relate to each other and our world. According to Flow, an interactive design consultancy, theoretical research has two main aims the validation of existing knowledge and the acquisition of new knowledge (Flow, 2009). Using design ethnography -- principles and techniques taken from social sciences such as sociology, anthropology and psychology to inform design decisions, business can find design solutions that are applicable in the real world, with a sustainable context outside of laboratories and meeting rooms.

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I What is Hothouse?

HOTHOUSE SUMMER 2011 - RISING TO THE CHALLENGE

This summer, five clients Intel Health Research and Innovation in Ireland, Intel Experience and Interaction Labs in the US, Swisscom in Switzerland, and brightsolid and Fjord in the UK chose to sponsor and share research under the theme of Mobile. Migrant. Communities. Its an unusual step to waive non-disclosure agreements in the name of collaborative innovation. According to Merholz, P., Schauer, B., Verba, D., and Wilkens, T. (2008), all researchers for the American design consultancy Adaptive Path, Ethnography isnt right for every organization or project. True ethnography is quite difficult and requires training, and is resource and time intensive. In the right situation they can provide enormous insights but ethnography is overkill for many projects. Making effective use of ethnography or other research methods requires a certain amount of organizational readiness. This suggests that ethnographers emerging role within modern business and design contexts is not simply within the field their exploratory nature, intellectual adaptability and people-focused facilitative skills are as relevant within an organization. Squires and Byrne (2002) emphasized the shift from the original long-term, academic orientation of ethnographic research to its applied emphasis in todays corporations. Although the most famous published ethnographies took years of prolonged fieldwork, most of these new ethnographies are done in weeks and never published they are conducted for public and provide organizations that need to learn and act quickly. Unlike academic investigations, applied ethnographic analysis cannot end with descriptions or explanations. They must draw out the implications of cultural insights and offer practicable guidelines for future ideas, plans, policies, organizations, activities, products, services, and images. Participants must become aware of, and capable of, challenging their own cultural assumptions. In essence, the people who create these breakthrough ideas must be able to break through their own cultural limitations and set new ones, for both themselves and those for whom they are creating. No single group of professionals can operate alone in such an ambitious effort. Five clients, fifteen graduate students, one theme while each team pursued individual angles on the shared focus on mobile, migrant, communities, we knew it would not have been possible alone to bridge people and design. As Dr. Macaulay wrote, the Hothouse model can provide a critical practice-based laboratory in a time when the need for innovative, grounded thinking about business and design challenges and opportunities is growing, [while offering] creative new ways for industry and academia to collaborate on experience research into cutting-edge, wide-ranging, business and design challenges and opportunities. We hope the following study on informal caregiving experiences within India and Finland offers a chance to practice not only ethnography, but to evoke the actionable connections that can make it design-relevant.

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I CLIENT: INTEL

BACKGROUND ON TRIL & THEIR RESEARCH -FOCUS

Our research team worked closely with the respected research and design team of The Technology Research for Independent Living (TRIL) Centre, a high profile research collaboration on ageing research. Founded in 2007 it is a multimillion Euro collaboration between Trinity College Dublin, University College Dublin, Intel & GE Healthcare. According to Intel (2007), The ultimate goal of Intels healthcare research is to understand the needs of the next generation of healthcare consumers and caregivers, and to invent the next generation of systems to support them. By helping consumers to become more proactive in managing their health, and providing caregivers (both formal and informal) with the tools and information they need to deliver care in any setting, from the home to the hospital, Intel hopes to play an important role in addressing the needs of the coming age wave. Technology is not a magic bullet, but we believe that it could be an integral part of the solution to the emerging global healthcare crisis.

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RE II.

The need to tackle the challenges is urgent. In 2002, 10 percent of the worlds population was 60 years of age or older.

RC EA S

By 2050, that percentage

IGN ES HD

will more than double to 21 percent, or nearly two billion people...

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II RESEARCH DESIGN

WHAT DO YOU LEARN when youre the first guest allowed inside in 3 years?
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II RESEARCH DESIGN

RESEARCH FOCUS
Our study examines the experiences of informal (family) caregivers using a comparative approach between India and Finland. In doing so, we would like to understand what forms of support networks and communities, whether formal or informal, are emerging and evolving to provide support and nurture well-being among the caregivers and how these coping strategies may be supported, improved or augmented, individually or through the community, through the culturally appropriate use of digital technology.

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NEED FOR RESEARCH - NOW AND FUTURE

During our study, we worked with caregivers and medical professions supporting caregiving across a wide variety of scenarios. However, a majority of our participants were in caregiving situations for adults over 60. The needs of family or informal caregivers and the elderly is situated at an important intersection of demographic trends that can either save (or cost) governments an enormous sum if not adequately anticipated and addressed. According to Intel (2008): The need to tackle the challenges is urgent. In 2002, 10 percent of the worlds population was 60 years of age or older. By 2050, that percentage will more than double to 21 percent, or nearly two billion people. As the elderly population increases, so will the incidence of chronic disease. In the United States, while 25% of the overall population has multiple chronic conditions, 67% of those over age 65 have two or more chronic illnesses. These illnesses are costly. Today, on average, as much as half of all healthcare spending in developed countries goes to treat diseases and conditions of the elderly. Cost is not the only concern. As the elderly population is increasing, the pool of healthcare professionals is shrinking worldwide. At Intel, we believe that new technologies, designed with an explicit focus on the needs of older adults, as well as their clinicians and family caregivers, can help to meet the challenges of an aging global population. Such technologies could ease the burden on strained healthcare systems while providing peace of mind and meaningful engagement for the aging population. Our research into the technology needs of the aging is focused on advancing personal health technologies, improving care in clinical environments, and promoting standards and policies that enable innovation and interoperability across the healthcare ecosystem. Like Intels the Global Aging Experience Study, which was to deepen understanding of the myriad social and cultural differences in peoples subjective experiences of aging and health and to challenge prevailing assumptions about what it means to grow old and to identify strategic opportunities for appropriate technologies and services for older people, our study focused on the personal, collective and cultural implications of how caregivers cope and, in understanding those subjective experiences, to position ourselves to understand the points of intervention that are open, and waiting, for design.

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II RESEARCH DESIGN

KEY questions
What is the nature/ontological status of family/informal caregiving within Finland and India? What is the lived experience of being a caregiver in two very different cultures (population, geography, economy, government policy, healthcare systems, etc). Who cares for the carers within these cultures? Who is the primary caregiver? Is s/he hidden/visible? Why and how? Who else shares the experience of caregiving? Why? How is caregiving shared, if shared? What coping strategies (individual, psychological, emotional, family-, community-based) are available? Missing? Emerging? Whats good and bad about current lived experience of carers? What do carers want to change about their current lived experience? How do organizations as opposed to individual carers view and/or address all of the above?

KEY QUESTIONS RESEARCH FOCUS:

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II RESEARCH DESIGN

RESEARCH PLAN, TIMELINE

A research team of three conducted research over three weeks (June 20 July 10) in Finland and India. To facilitate access and in-depth context, each field site benefited from a native speaker/citizen as field lead during the full three week period (Anamika Debnath in India and Anna Kulonen in Finland). The third researcher, Han Pham, was the team research lead facilitating connections and collaboration across sites. (Note: This structure takes advantage of the natural strengths of the cultural and linguistic makeup of the team, while providing a strong team management and support base to mitigate the risks in approaching the field.) Our Finland research focused primarily in Helsinki and Tampere the former as the location of nationally-focused caregiver support and the latter as a regional/local base for gaining access to individual caregivers. Within India, our research focused in Kolkata for organizational and individual access to caregivers and caregiving support programs, while an additional arm will explore the online network emerging in and connected to Bangalore.

RESEARCH METHODOLOGY
Our work began with an exploratory review of literature on mobility, mutual aid and social support systems, caregiving, dementia, and aging. In the field, our ethnographic techniques included open-ended interviews in person and online, individually and in groups, observations, participation in caregiver trainings and homesite visits at sites within India and Finland. Our recruitment was aided by medical professions and community-based organizations supporting caregivers who opened their networks to us, allowing us to interact with more than 30 participants during our fieldwork, ranging in age from 35-95. However, the majority of our participants within India were caregivers or medical professionals supporting elder care and Alzheimers care. While we were fortunate to collect both video and photographs, in addition to audio interviews and written notes, the sensitive nature of our participants caregiving experience necessitated a careful and sensitive approach which allowed for numerous breaks in communication to allow for caregiving, or simply to listen as stories were revealed and shared for the first time in decades. A through content analysis process also allowed us to develop a shared understanding across the use of four languages in our research, and the development of subsequent knowledge transfer tools aim at continuing the longevity of the research within our client organization.

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III. E+ AC PL

The interesting shifts in culture, values, economics and population, have created a tremendous market potential for informal care related solutions in India. The population of 60+ persons is in steady rise, reaching estimated 114 million people in 2015 and 187 million in 2030.

PLE EO P

...

III PLACE + PEOPLE

IN 2050, India will have

16 million

of

the worlds 100 million people affected by dementia.

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FIELDSITE TOPLINE: FINLAND & INDIA

In the near future both developed and developing countries will face a rise in the population of older persons. At the same, theres a severe shortage of health care workers worldwide, which reached 4.3 million in 2006. These trends caused by migration, brain drain, withering of the joint family system (specifically for India) and increased life expectancies in the last century predict a worldwide rise in the informal unpaid care by family members. The interesting shifts in culture, values, economics and population, have created a tremendous market potential for informal care related solutions in India. The population of 60+ persons is in steady rise, reaching estimated 114 million people in 2015 and 187 million in 2030. The life expectancy in India has risen from 37.9 years to 66 years during the last 60 years. (United Nations, 2011) In recent times, Indian society is witnessing a gradual but definite withering of the joint family system due to this mobility and migration. With the breakdown in traditional support systems and shortage of adequate healthcare, an increasing number of elderly require home care by family members with or without the support of professional caregivers. In India, professional care-giving is not yet a well-defined concept. Culturally, family members have stepped in to take care of anyone with a degenerative illness. However the specific needs and concerns of family caretakers and their employed caregivers is still an emergent area of knowledge. Finland on the other hand has over 20 years history of formal caregiver recognition and support. Finlands rapidly aging population and 39th longest life expectancy in the world will create an enormous drain to countrys relatively advanced community healthcare system. It is estimated that the demographic dependency ratio (number of children and elderly per 100 persons in working age) will reach 74 percent by the year 2035. Currently informal caregivers are saving over 1 billion Euros of Finnish governments funds annually. (Statistics Finland, 2009)

FIELD SITE DESCRIPTION: FINLAND

Finland is a Nordic country with total population of 5.4 million people (United Nations, 2011), 5.2 million mobile phones and 1.8 million saunas (Visit Finland, 2011). Finland has an average population density of 16 inhabitants per square kilometer (United Nations, 2011), which is the thirdlowest population density of any European country (Wikipedia, 2011). According to the 2009 statistics, a round 92 percent of Finns have a mobile phone and 83.5 percent have an Internet connection at home. Finland has a highly industrialized mixed economy with a per capita output equal to that of other European economies such as France, Germany, Belgium or the UK. Overall short-term outlook was good, and GDP growth has been above many EU peers. (Wikipedia, 2011) The life expectancy at birth in Finland is 79.3 years, and according to the 2010 records the proportion of population over 60 years old is 25 % (United Nations, 2011). According to Statistics Finland, the demographic dependency ratio (number of children and elderly per 100 persons in working age) was 51% in 2009, and its estimated to grow to 74% by the year 2035 (Statistics Finland, 2009). The history of caretaking Finlands constitutional law defines the basic rights of all the citizen, one of which is the right to social security (19). According to the constitutional law, everyone whos not capable to obtain the security, which a life worthy of a human being would demand, is entitled to the necessary livelihood and care. (Kaivolainen et al., 2011) The history of caregivers support systems and transformation from institutional care to supporting home care is relatively short in Finland. The term caregiver has established in the 1990s and first act regarding family caregiving came into effect in July 1993. (Kaivolainen et al., 2011) Up until the year 1970, adult children had the lawful responsibility to take care of their elderly parents and participate, for example to the costs of institutional care. From

the 1970 legislation this responsibility was already removed, and in 1977 also the responsibility of taking care of your spouse was removed from the marriage legislation. This meant that municipalities became the lawful caretaker of its residents. (Kaivolainen et al., 2011) Current landscape of caregiving Finnish legislation defines that caregiver is someone who is a kin or kith of the care receiver, and who has made the official caregiving agreement with the patients municipality. In the year 2009 there were about 36,000 official caregivers in Finland. However, according to the Caregiving Survey conducted in 2008 by Taloustutkimus Oy, many of the Finnish family caregivers dont acknowledge of being a caregiver. Majority of caregivers is thus outside the official support systems, even though they would be entitled to it based on the demanding nature of their care situation. (Kaivolainen et al., 2011). It has been estimated that there are over 300,000 family caregivers in Finland (Omaishoitajat ja Lheiset Liitto ry, 2010). Caregivers with the official caregiver agreement are entitled to monthly monetary support from their council as well as variety of social and health care services, such as meal service, home care service, caregiver rehabilitation, day care activities, and short term institutional care. They are also entitled to have three holidays per month. The national caregivers association, Omaishoitajat ja Lheiset Liitto ry, was established in 1991 and its purpose is to provide support and operate as an advocate for the Finnish caregivers. It provides support, counseling, education, development programs, guide materials and supported holidays for its members. (Kaivolainen et al., 2011) The association has a broader definition for the caregivers, and it doesnt limit its members to those entitled to the official support. According to the association caregiver is a person, who takes care of their kin or kith, which due to an illness, disability or other special need cant cope from everyday tasks independently. Omaishoitajat ja Lheiset Liitto ry has 70 local associations. (Kaivolainen et al., 2011).

FIELD SITE DESCRIPTION: INDIA

India, officially the Republic of India is a country in South Asia. It is the seventh-largest country by geographical area, the second-most populous country with over 1.2 billion people, and the most populous democracy in the world. India is one of the oldest civilizations in the world with a kaleidoscopic variety and rich cultural heritage. Indias population as on 1 March 2001 stood at 1,028 million, out of them 532.1 million males and 496.4 million females. According to provisional results of Census 2011, Indias population grew to 1.21 billion in 2011. India accounts for a meagre 2.4 per cent of the world surface area of 135.79 million sq km. Yet, it supports and sustains a whopping 17.5 per cent of the world population (www.india.gov.in). In 1950 only 5.4% of the population was aged over 60 years, but in 2010 the number rose to 7.6%. (United Nations, 2011) In 2010, Alzheimers and Related Disorders Society of India (ARDSI) estimated that 3.7 million Indian people aged over 60 have dementia , out of which 2.1 million women and 1.5 million men ( The Dementia India Report 2010). According to the International Monetary Fund, Indias nominal GDP for 2010 was US$1.538 trillion and its estimated GDP for 2011 is US$1.7 trillion, making it the tenth-largest economy in the world. In terms of purchasing power parity (PPP), Indias economy is the fourth largest in the world at US$4.06 trillion. With its average annual GDP growing at 5.8% for the past two decades, and at 10.4% during 2010, India is also one of the fastest growing economies in the world. Indias base of 81 million Internet users is the worlds fourth largest; yet just 20 percent of Indias urban citizens are connected to the Internet (Source: Internet World Stats, 2010). Even though typical Indian consumers have no Internet access, they consume an average of 4.5 hours of it daily across offline channels such as television, DVDs, and CDs , while they use mobile phones predominantly for voice services (Retrieved from https://www.mckinseyquarterly.com/ Can_India_lead_the_mobile-Internet_revolution_2746). The History of Caretaking Traditionally, in India, the most common form of family structure was the joint family. The extended family consisted of at least two generations living together and this arrangement was usually to the advantage of the elderly as they enjoyed a special status and power. Part of the value system of traditional Indian society was the veneration of elders. Parents in particular were held in the greatest regard. Taking care of parents in their old age was regarded as a sacred duty of children and failing to pay back Pithru Rina (filial debt) would have dire consequences in afterlife. In fact, Indian religious literature, the epics, folklore and tradition, all reflect this value system (Bhat & Dhruvrajan, 2001). In India, family have always stepped in to take care of anyone with a degenerative illness and female members have taken responsibility of the day-to-day care-giving. Formal paid care-giving is yet to be accepted widely, especially among the poor and in rural areas. But with growing urbanization and depending on the availability of jobs, children are moving out of the extended family set-up, leaving empty nest behind and establishing their own nuclear families. In the absence of traditional caregivers, due to the disintegration of the joint family and women moving out of the household, the elderly and ill have become a vulnerable group, needing care and attention.

the quality of their lives. Primary objectives of the policy included: to encourage individuals to make provision for their own as well as their spouses old age; to encourage families to take care of their older family members; to enable and support voluntary and non-governmental organizations to supplement the care provided by the family; to create awareness regarding elderly persons to help them lead productiveand independent live.

Central Sector Scheme of Integrated Programme for Older Persons (IPOP) is being implemented since 1992 with the objective of improving the quality of life of senior citizens by providing basic amenities like shelter, food, medical care and entertainment opportunities and by encouraging productive and active ageing through providing support for capacity building of Government/ Non-Governmental Organizations/Panchayati Raj Institutions/ local bodies and the Community at large. The Scheme has been made flexible so as to meet the diverse needs of older persons including reinforcement and strengthening of the family, awareness generation on issues pertaining to older persons, popularization of the concept of lifelong preparation for old age, facilitating productive ageing, etc. The Scheme has been revised w.e.f. 1.4.2008. Besides increase in amount of financial assistance for existing projects, several innovative projects have been added as being eligible for assistance under the Scheme. Some of these are: Maintenance of Respite Care Homes and Continuous Care Homes; Running of Day Care Centres for Alzheimers Disease/ Dementia Patients, Physiotherapy Clinics for older persons;

Current landscape of caregiving The National Policy on Older Persons (NPOP) was announced in January 1999 to reaffirm the commitment to ensure the well-being of the older persons. The Policy envisaged State support to ensure financial and food security, health care, shelter and other needs of older persons, equitable share in development, protection against abuse and exploitation, and availability of services to improve

Help-lines and Counseling Centres for older persons; Sensitizing programmes for children particularly in Schools and Colleges; Regional Resource and Training Centres of Caregivers to the older persons; Awareness Generation Programmes for Older Persons and Care Givers; Formation of Senior Citizens Associations etc.

National Institute of Social Defence (NISD), is an autonomous body under the Ministry of Social Justice and Empowerment, Government of India , runs a series of Programmes/Certificate Courses to educate and train persons who can provide care to older persons in the family and community settings. The Institute is also carrying out orientation programmes in several regions of the country to generate awareness among senior citizens on the welfare facilities/programmes available for them and also sensitize government and non-government functionaries on special needs of the elderly. However, there is no state-support or mention of care-givers in any of the national policy yet. Different organizations and individuals run support networks for care-givers. A few organizations also formally train students for care-giving. The chapters of ARDSI in India, a few NGOS like Sathi in Ahmedabad, a few hospitals like NIMHANS and individuals like Ms. Swapna Kishore provides information and support for care-giving in India.

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research MATRIX


IV. NO ETH

This psycho-social context is important to design: a design solution for a particular need may be adept at technically resolving it, but it

HTS SIG IN
isnt valuable and actionable if it falls outside the framework of what the caregiver perceives as an available and appropriate option...

...

IV ETHNO INSIGHTS

THEMES #1 PRE-CONTENT ANALYSIS THEMES #2 - AFFINITIZATION THEMES #3 SYNTHESIS DESIGN SCENARIOS

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IV ETHNO INSIGHTS

THEMES #1
C1_WHO. (Caregiver-Caregiver)- WHO Caregivers Primary caregiver Shared caregiving Resources C2_WHAT. (Caregiver-Care receiver) WHAT & HOW What they do for care receiver Nature/Status-- of caregiving Role of caregiving Caregiving tasks or concerns Burden C3_COPE. (Caregiver-Self) COPING * Coping Recovery Gaps Obstacles C4_CULTURE (Caregiver-Culture) - CULTURE Culture Perceptions Definitions C5_COMMUNICATION (Caregiver-External/ Communication) - COMMUNICATION Communication Sharing Support Family Technology C6_COMMUNITY (Caregiver-Community) COMMUNITY Networks Community Peers C7_QUALITY (Caregiver-Self) - QUALITY OF LIFE Identity of caregiver Quality of Life C8_ENVIRONMENT(Caregiver-Environment) - ENVIRONMENT Place, Space C9_FUTURE (Caregiver-Future) FUTURE Change (current or desired) Expectations

THEMES #1 PRE- CONTENT ANALYSIS

Our initial content analysis and coding focused on the following themes, which represented the basic research focus question areas. We refer to these initial themes as the universe of the caregiver; understanding the permutations of the various relationships the caregiver must negotiate helps us understand the interconnectedness of coping strategies and challenges as well as the people and networks that impact and are impacted by the caregiver. Of particular note is C3_Coping, which we originally identified as a relationship between the caregiver and their own needs. As revealed later in our service design map, subsequent analysis showed a dual relationship in coping strategies that required an awareness of both caregiver needs as well as care receiver needs, and how, why and when one took priority over the other.

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IV ETHNO INSIGHTS

THEMES #2
In the following descriptions, we use Type to describe whether participants across our field sites generally perceived the category as a barrier (an obstacle to caregiving) or a bridge (a resource). Key: CG = Caregiver | CR = Care Receiver

THEMES #2 - AFFINITIZATION
Further content analysis revealed 21 new thematic areas. What we see developing is a stronger view of the multiple relationships within a particular theme, including the importance of pre-existing relationships. The layering of relationships hints at the reality that understanding coping strategies also requires an understanding of how caregiving is not only individually perceived and acted upon, but how it is socially and culturally constructed. This psycho-social context is important to design: a design solution for a particular need may be adept at technically resolving it, but it isnt valuable and actionable if it falls outside the framework of what the caregiver perceives as an available and appropriate option. These 21 themes also begin to lead to both the caregiver continuum of experience as well as the wider social system in which they operate. For example, during our research we understood how culture can affect caregiving and caregiving roles, but also began to note instances in which culture was being (re)made either within individual caregiver families (for example, in India where paid caregiving attendants were permitted to eat at the same table as the family, even though it was socially uncomfortable for the care receiver, because it ultimately promoted the care receivers health) or by medical organizations which were able to break down cultural and gender hierarchies in caregiving through the development of innovative community care models. We revisit these 21 themes, and develop them into design insights using participants trigger stories, in our future section on opportunity mapping and design applications.

01. NEW CG IDENTITY & AWARENESS Type: Barrier Relationships: CG - Self, CG-Society Acknowledging caregiving identity

This thematic area eventually formed the first phase on our service design map and it applies to both the acknowledgement of the primary caregiver role, as well as the realization of peripheral caregivers they are also in a caregiving role. We understood from our participants it is difficult for caregivers to both acknowledge and accept their caregiving role due to a variety of factors: We heard Care is invisible because its expected; that although there are some legal definitions of caregiving available, there is little consensus; that most caregivers dont realize they are a caregiver; and although many people know someone who is in a caregiving situation, there are few known resources. Acknowledgement and acceptance plays a crucial role in understanding the research question, Who cares for the carers because, as one participant told us, there is no care [for caregivers] if caregiving is not acknowledged.

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02. PRE-EXISTING RELATIONSHIPS. Type: Barrier/Bridge Relationship: CG - Care Receiver (CR) The effect of prior relationship dynamics on CG We heard form our participants caregiving can transform, and sometimes reverse, previous relationship roles, which is difficult to cope with whether its children caring for parents or spouses caring for each other within a changed marital context. While many of our caregivers had different responses and adaptation to their eventual caregiving role, the condition of the previous relationship between the caregiver and care receiver (prior to the onset of the caregiving situation) seemed to play a role in adaptation and coping. For example, a strong prior relationship created opportunities to revisit positive memories as fuel to for patience and understanding to cope with the present. Likewise, we found that a prior history with other family members also affected the caregiver identity and coping; in one situation we observed, the caregivers incentive to be an involved caregiver for her mother was driven in part by a desire to compensate for her fathers treatment of her mother.

03. CARE AND CAREGIVING. Type: Barrier/Bridge Relationship: CG - Care Receiver The role of the CG What the CG provides for the CR This thematic area addresses how caregivers perceive their role. While caregivers may share many of the same day-to-day routines, how they perceive their role affects both the care offered as well as the quality of the caregiver-care receiver relationship. Most caregivers perceived themselves as guards more than guardians in charge of mediating the immediate environment to ensure their care receivers safety and comfort. One interviewee mentioned her role as balancing protection and exposure. While few of our participants were comfortable or open about voicing negativity regarding their role, many considered themselves interpreters of the care receivers experience. They are often constantly caring for and assessing the care-receivers needs, and, in cases where communication is compromised, gauging the state of mind of the care receiver without feedback. In some unique cases, caregivers were able to consider the care-receiver as another partner in caring. For example, although care receivers may face some limitations due to their particular situation, some caregivers sought to actively involve their care receiver, and acknowledged the impulse of the care-receiver to maintain a sense of self-dignity, self-

esteem, and the need to be needed. In one case, a husband caring for his ailing wife said although she may have limits, he wants to make her feel as if she has no limitations and always made sure that she is always in a drawing room; not in a corner. In another scenario, the care receiver was able to maintain their selfdignity through their own bank account, although their responsibility for taking care of the account was limited. This ability to create avenues for the care-receivers continued involvement in their own care created a motivating and rejuvenated relationship between the carer and carereceiver.

other others) did not assist in caring, even a dog functioned as a fellow caregiver by alerting one participant to emergencies. In another case, a caregiver came from a surprising case a father became a caregiver for his sons girlfriends father, learning a special form of Indian singing to comfort the care receiver. There is an exciting new space in considering who the peers on a caregiver peer network could potentially be. In many cases across both field sites, there were available extended family members who could help in caring but the primary caregiver considered them on hold caregivers to be called upon in emergencies. In addition, support for caregivers often came from long distance guides an aunt who could be called to coax a care receiver into eating or a sister who could provide guidance over the telephone. Furthermore, the caregiver identity is a robust one in both Finland and India, former caregivers continued to play an active (if not more active) role in the caregiving community even after the end of their caregiving responsibilities. One of the most interesting examples of fellow caregivers for dementia patients was observed in India. A synchronized collection of staff and volunteers at a community daycare center created a swimming pool of care which p. 29 bathed patients in a constant stream of attention, touch, support, and conversation in a way that overcame dementia patients aversion to unfamiliar situations and people.

04. FELLOW CG. Type: Bridge Relationship: CG - Other CG Who can share caregiving In asking who are the caregivers, we understood that even in cases where the primary caregiver felt as if there is no one else, caregiving rarely happened in isolation. Secondary, tertiary and other caregivers included other caregivers (found in peer support groups), community professionals (in one case a community caregiver was able to prevent the double suicide of a spousal carer and her husband in India), a trio of sons who took care of their mother at her own residence although they lived in different cities and countries, grown nephews who helped a mother care for her son (their cousin) when the first generation (her husband, her sister,

05. REALITY & ESCAPE: SUPPORT. Type: Bridge Relationship: CG - Other CG How others provide support to CG This area examined what type of support caregivers seek from fellow carers when they reach out. Interestingly, we found there were many communication barriers within a families that prevented carers from sharing their experiences, let alone asking for support with caregiving duties. In more than one case, in both Finland and India, sharing was limited to the immediate family even though an extended family may be abundant and close by. For example, while a participant may not be comfortable with sharing experiences with brother or sisters-in-law or step children, a close blood-relation (such as a sister) felt safe enough to share. In addition, we found that most of our participants werent seeking complex solutions: they wanted practical advice (for example how to get better benefits to obtain better diapers or tips on how to get their care receiver to eat) or just a chance not to be a caregiver (a few of our participants were involved in caregiver support groups who talked about anything but caregiving; another caregiver found support in her 6-year-old daughter with whom she could simply share a pizza and go to the library). An interesting question that arose from one of our participants is the variable of group size in efficacy of peer support groups. A Finnish participant and program

manager mentioned how a peer support group (in person) was not as successful because of too few participants; is this valid across all in person groups? How do numbers chance the experience of online support groups?

it hard to detach or distract themselves; and found it difficult to ask for help for fear of judgment they were not capable. We understood that grief or grieving was a continual and ongoing process not only after caregiving, but also during it. Caregivers needed to cope with losing their former identity, jobs, friends, homes, networks, dreams, relationships and more Caregivers often shared a desire or hope for a sense of stability, and often focused creating stability simply within the day-today demands of caregiving and found it hard to look further than the home.

06. CG BURDENS - 24/7. Type: Barrier Relationship: CG - Self; CG - CR What CG need to cope with; burden of CG This area encompasses what caregivers perceive as burdens. Interestingly, during our research, this was an area that was difficult for caregivers to share. Eventually we heard that participants need to cope with questions of why me? (feelings of unequal caregiver sharing within families); physical exhaustion; job loss or job transition due to caring; emotional difficulty in making decisions for kin (in one instance, a participant needed to damage his wifes teeth in order to feed her); emotional strain of role reversals in parental caring; lack of the ability to consider a future while a care receiver; social isolation from previous family, friends and neighbors; blurring of roles (one participant shared that a 24 hour role as caregiver, nurse, wife and housekeeper can be confusing and draining). We learned that most of our participants experienced some feeling of loneliness and despair; often were so committed to the daily routine of caregiving they found

felt there was little room to negotiate with families or institutions; one caregiver in Finland described applying for benefits as a battle and humiliating; several caregivers in India said there was no negotiation of their roles or duties. The different experiences of caregiving/care receiver inside the home versus outside the home (for example, some care receivers can maintain natural social grace in public, which can obscure the interactions that occur privately) often caused a conflict between the carer, care receiver and the public. Silence was tied closely to the ability to ask for help caregivers found it difficult to express the need for help, of resentment, or the effect of caregiving. Silence as a positive tool is revisited later in the theme of CG/CR New Perceptions.

07. CG SILENCE Type: Barrier Relationship: CG - Society; CG-Family; CGCulture Barriers to communication and sharing by CG Silence as a theme was tied to other themes: both the conditions which surrounded caregiver acknowledgement or acceptance, as well caregiver burdens. Caregiver identities were often hidden or blocked by cultural stigma and critique (in Finland for accepting social benefits; in India out of cultural values of familial responsibilities). We heard that saints dont complain, reflecting a large emphasis in India on the cultural duty of caring and the cultural taboo of both complaining or celebrating (praising) yourself to acknowledge the work and difficulties in being a carer. Caregivers

08. CULTURAL HIERARCHY & VALUES Type: Barrier Relationship: CG - Society; CG-Family; CGCulture The effect of dynamics of culture and values to CG

Culture appeared to be an obstacle to caregiving and caregiving resources in both field sites and was particularly apparent in the experiences of our Indian participants. Divisions between gender and family roles created a rupture in asking for and giving help. For example, despite an older sister close by, one caregiver felt unable to ask for help,

stating the young cant complain. Other caregivers described the Indian outlook on complaining or withholding caregiving as a sin. Respect for the elderly created difficulties in negotiating care for older care-receivers as parental authority conflicted with caregiver authority. Moreover, as described in our design case scenarios, gender played a limiting role in caregiving instead of being able to enact direct caregiving, women caring for men (especially older relatives) needed to employ begging their father to eat whereas a son would be able to spoon the food directly. Likewise, a granddaughter needed to team up with her aunt in order to provide co-care in a way that circumvented limiting gender barriers.

(for example, while caregiver holidays are offered; 2/3 of those eligible do not use them) or social stigma that limits the acceptability of such support. Looking forward, some of our Finnish participants expressed concern at the privatization of health institutions, which added additional stress. Our participants shared that, due to privacy concerns, caregiving organizations often did not coordinate with each other which provides an opportunity to help streamline and connect communication across support organizations. While there were numerous support organizations in place for carers, at the local, regional and national level, Finnish carers still looked to their peers for practical support on how to navigate the Finnish system; for some of the participants, there was a lack of trust in the established system since they felt they needed to fight to get support.

the caregiving experience within the home and so therefore advice received from medical professions who may specialize in institutional caregiving could not be applied within a homecare setting. A positive situation involving medical professionals occurred when a participant interacted with doctor residents who seemed more willing to share as they, too, were in a learning mode; in addition, a participant mentioned doctors were more willing to interact with caregivers if caregivers came prepared for answers.

shared that the national caregiving organization asked local chapters to avoid complaining publicly; therefore, there is some question as to ability for caregivers to fully share the breadth and range of their experience in public and the media without compromising the current goodwill toward caregivers.

12. VERBAL COMMUNICATION. Type: Barrier Relationship: CG - Care Receiver (CR), CG- Society, Communication changes during caregiving and can often be both a resource and a stressor. In many cases, subtle shifts in language reflected the caregivers use of language to cope through linguistic distance. For example, it was observed that many caregivers, when asked how they were doing, often replied with how their care receiver was doing. As one participant shared, the shift from I to We often signaled oncoming burnout as caregivers were defining their lives through the care receiver, causing a difficulty in addressing the often different needs between the two individuals. Likewise, ex caregivers whose care receiver has passed away, often refused to directly refer to the death, rather stating p. 31 the change in caregiving duties My caring ended 1.5 years ago.

11. MEDIA & PUBLICITY Type: Barrier Relationship: CG - Publicity, CG - media , CG - society The dynamics between role and image and its effect on the relationship with media & publicity. As there is a lack of awareness around caregiving within India, there appears to be low visibility for caregivers within the media. One participant shared that when she has been interviewed for the media, in her opinion, the media tends to sensationalize the story by looking for the sob story in addition, she felt the media portrays caregivers as incapable of resolving the situation individually without the intervention of institutions. In contrast, our Finnish participants shared a current increase in public media coverage and positive perception around caregiving. However, this positive publicity comes at a cost: for example, one of our participants

09. ORGANIZATIONS & BUREAUCRACY. Type: Barrier Relationship: CG - Organizations, CGPolicy, CG- State support Hurdles and barriers to receive support from organizations While Finland has a socialized health care system and has acknowledged/provided support for caregivers for close to twenty years, our participants shared the existence of bureaucracy that hindered caregiving support. For example, while financial and programmatic support is offered to caregivers, there is a substantial number that do not take advantage of the available resources, either because of the inappropriateness of the solution

10. MEDICAL ROLE Type: Barrier Type: Relationship: CG - Medical professionals The role of medical professionals to provide info and support to CG. When our participants talked about the medical profession, many spoke of the lack of information they received from doctors. In some cases, care givers shared that doctors assumed caregivers werent knowledgeable; in other cases the doctors had incomplete information about

13. NON VERBAL COMMUNICATION. Type: Bridge Relationship: CG - Care Receiver (CR), CG- Society, CG - Other CG Touch and gestures replace words; sharing without words. In many of the caregiving relationships we observed, former verbal communication relationships underwent a change, in many cases due to the condition of the care receiver. The dependence on earlier communication habits in a limited communication capacity can be stressful for both parties; in many cases, especially with dementia, the care receiver could not offer the same level of verbal connection and in fact, as one participant told us, words can get in the way. We learned that silence can be an art which takes practice and can be a tool. For example, non verbal communication from silence to touch can provide reassurance and connection when words fail. This was especially poignant as caregivers shared they longed to pour your heart out to someone but were unable to do so. It may be the non-verbal mediums of communication may provide a prompt for both care receivers and care givers to connect.

14. CG AND SELF: WELLBEING. Type: Bridge Relationship: CG - CG, CG - Self When asked about their hopes for the future or how they care for their own wellbeing, our participants found it hard to comprehend how to answer. Self care for caregivers was important to the overall wellbeing of both caregiver and care receiver, but not necessarily top of mind until other immediate priorities were addressed. When caregivers did share their coping strategies for self care, we learned it was diverse: writing, exercise, acupuncture, pizza with a loved one, lighting a sauna, a motorcycle ride, learning to sing a Rabindra rainy season song to their care receiver. Coping strategies for self-care vary widely. However, one thing that was common across participants was that self-care and personal hobbies often needed to be let go in order to care. Time consuming hobbies were especially not possible to maintain. Diversion from caregiving was often mentioned; often the all day and all night concerns of caregiving was hard to turn off mentally. One of the prime catalysts for caregivers to think about their own care or the future was a change in their own health, which would lead more successfully to a revaluation of the caregiving situation.

15. CG & CR: NEW PERCEPTIONS. Type: Bridge Relationship: CG - CR, CG-Family, ChSociety How new perceptions are being created between CG & CR. We understood that the care receiver and caregiver relationship is constantly changing over time. The most successful adaptations involved a new way of perceiving the care receiver. In some cases, the caregiver was able to nurture this new way of perceiving the caregiving relationship on their own (in one case, an elderly spousal caregiver shared how he no longer had a loving wife but a wife that had become his loving granddaughter due to her mental deterioration) and in other cases, the support of fellow caregivers may provide the mental and emotional distance to perceive new possibilities within caregiving. In Finland, we met a lively spousal caregiver in her 50s who was also a newlywed. One and a half years into her new marriage, her husband suffered a stroke. This positive, energetic woman was faced with the anger at the couple losing their future and didnt know who to direct the anger toward as it could neither go toward her husband or herself. Eventually, she was determined to find the silver lining in caregiving. This perception of the silver lining is at the heart of the way in which a repreception of the caregiving relationshio can provide a renewed sense of purpose and connection as it changed the magnitude of expectations. In ARDSI Calcutta, a sign

on the door reads dementia is a human experience, not a disease. The ability to perceive the human experiential and interactive quality of caregiving beyond a rota of duty included caregivers learning how to turn a blind eye in a positive way, how to care for the care receiver from the inside out by placing less emphasis on how the care receiver may act externally, and relishing the small moments of caregiving instead of the milestones.

16. SOCIAL INCLUSION Type: Bridge Relationship: CG - Society/Community How the role of peer support can provide visibility We found that due to their caregiving role often leads to a withdrawal from social networks on the part of the both the care giver and care receiver, including a change in involvement in work and community. This may be due in part due to external parties, such as former colleagues or friends, who reduce their association with the caregiver and also a decision by the caregiver in order to provide more care and stability for the care receiver. However, the ability to stay connected to the society is crucial to build the care givers identity beyond the caregiving role. In many cases, caregivers found more time to become involved within the caregiving community after their caregiving role ended. For others, the presence of a caregiver support organization allowed

a larger presence and visibility within society. Support organizations served as icebreakers for strangers to connect and share their experiences; blogging offered others a public role beyond caregiving even though physical movement was limited; and peer support groups not only helped alleviate the feeling of isolation for caregivers, but also provided a more robust, collective presence and voice in society.

17. (RE) MAKING CULTURE Type: Bridge Relationship: CG - Culture Emerging cultural behaviors We observed within India, there are subtle but compelling shifts within cultural structures. Although there are still strong limitations to caregiving by gender, bloodline, and social status, family needs are changing. We heard from our participants that although many felt uncomfortable sharing caregiving experiences beyond the immediate nuclear family, much less strangers, new community support organizations are creating spaces for non-family members to help share in the caregiving experience. Likewise, within family care environments that employ paid care attendants, families are including paid care attendants in daily activities such as eating together at the same table. Although this may be disturbing for the care receiver, especially if they are of an older generation, some caregivers are

choosing to break through those cultural boundaries in order to provide a better care environment (for example, by seeing the paid care attendant enjoying the meal, the care receiver may learn to enjoy the meal). In other situations, we learned that not only families are breaking up and migrating apart, but the shared intergenerational home is changing both because the children are moving away and because the parents are learning to appreciate their own home environment in more than one example, although it would have been easier for the adult children to care for their parent within the same household, their parents would actually choose to live apart and enjoy the familiarity and independence of their own home. Other female participants acknowledged the limitations imposed by gender, but creatively learned to provide gendered co-caregiving (for example between a young daughter and her older aunt for her grandfather) in order to combine their strengths (for example, while the aunt had more authority due to age, the granddaughter could speak more freely). Likewise, although the gender barrier in touch may be significant enough to prevent a daughter from physically helping her grandfather, some organizations, such as staff and volunteers at ARDSI Calcutta are liberally using consistent touch (on the arm, leg, shoulder, back) to reassure and guide care receivers, even though this may traditionally be taboo. Interestingly, the daycare observed at ARDSI Calcutta still faces some gender barriers in caregiving all of their clients

are male. The staff shared that although some caregivers enroll their female care receivers into the daycare center, they often drop out for a variety of reasons due to the mixed-gender environment. In some cases, the often older female care receiver is unaccustomed to being outside of the home in the company of non-relative males; in others a male spousal caregiver may not be used to the idea of someone else caring for his wife or being comfortable with his wife outside the home.

18. ORGANIZATIONAL NEEDS Type: Bridge Relationship: CG - Organizations, CGPolicy, CG- State support The need from/for appropriate organizations to support care-giving. Organizational needs is the broad category addressing how future organizations will need to be structured in order to address the needs of caregivers. One consideration that needs to be taken into account is that care institutions have a negative connation in both Finland and India caregivers from both countries shared how they did not want to place their care receiver into an institution. Within India, there are 80 million elderly whose needs are not homogenous. At the same time, 2/3 of those needing help with caring cannot afford to hire additional support, which heightens a need for public or community care options. Financial and mobility constraints suggests that future

medical institutions will need to move care support from clinics to the home novel community care solutions in Goa helps address social isolation, caregiver burden, and youth unemployment by training and employing community carers to work directly within communities and caregiver homes to provide support and objective assessment of caregiver needs. Moreover, our participants echoed a need for multidisciplinary teams that could help them understand and navigate the many complexities of caregiving, and a desire for a mixed offline/online approach (some felt online resources were useful for initial information gather, but in person support allowed a deeper connection).

19. CONNECTION CATALYSTS. Type: Bridge Relationship: CG - Other CG, CG - Society Situations, methods and behaviour furthering CG connections. Connection catalysts is a term used to refer to how community organizations can initially welcome caregivers and help caregivers connect by breaking the ice. Some organizations in Finland create a space for caregiver wellbeing by providing a venue and opportunity for caregivers to physically separate p. 33 themselves from the caregiving environment. Other catalyzing activities were simpler poems and rejuvenating images of nature triggered conversation and reflection, handicraft activities such as making kettle holders

from recycled coffee packets helped caregivers keep busy and ease into new friendsips. The presence of a sympathetic outside eye provided an opening for caregivers to open up in a way that may not be possible individually. One of the major impacts of support organizations on caregivers is the providing a positive perception of caregivers.

20. SPACE & OBJECTS Type: Bridge Relationship: CG - Environment; CG-CR; CG - Self Use of spaces and objects for coping and comfort We learned that caregivers and care receivers depend on the ability to have a stable, controlled environment. Not only are caregivers familiar with the obstacles or resources a familiar object can offer, care receivers also become reliant upon the familiarity of place, space and things. For dementia patients, even the introduction of a new towel or chair can be disconcerting. One participant shared how his father loved his wool cap so much they were only able to sneak it away to be washed when he was sleeping. Small changes in environment could spell comfort (the presence of fresh flowers in water as a welcoming gesture; the use of locks inside and outside to provide peace of mind the care receiver could not wander into traffic) or disturbance. Familiarity of space was poignant especially in dementia-care situations in

which sometimes both the caregiver and care receiver may feel like strangers in their own home. In one example, a care receiver thought that her husband was a stranger and tried to push him out of the home. We heard more than once, within these very dynamic situations, familiarity counts. For dementia care, where familiarity with the physical space may be difficult due to change over time, a chance to connect with old haunts may be important both for emotional wellbeing but also to help the caregiver understand the old habits and needs the care receiver may regress to. Play objects may serve as a useful tool in helping both care giver and care receiver connect and communicate.

rare. Other participants voiced concern that there would be a touch gap in online networks, or a negative effect from the inability to be physically co-present. There appears to be an opportunity for technology to address some of the situations addressed in the earlier theme areas, although most participants did not immediately consider technology as an immediate solution. In the cases of dementia caregiving, technology solutions would need to account for the needs of the care receiver for familiar (non-novel) objects if planned to be used by the care receiver. For example, although the ability to turn on or off a TV, or read a clock, may disappear for some care receivers, other very simple actions (a light switch) may remain over time.

21. TOUCH & TECHNOLOGY Type: Barrier/Bridge Relationship: CG - Other CG; CG-CR; CGCommunication CG and CR needs and preferences on communication. We found that technology was an underutilized area for our participants. It was rarely mentioned as resource. In a few cases, in particular for our participants involved in online community building, the internet was seen as a resource but only as a starting point, and acknowledged to be insufficient, both due to the lack of culturally appropriate resources or because of access. Some participants acknowledged the potential of the internet as a connection tool, but it was

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IV ETHNO INSIGHTS

THEMES #3
Our service design map identifies needed design interventions at various stages of the caregiver experience some are individual and home-centred; others facilitate organizational support; still other interventions are needed to deepen caregiver connections outside the home. Below is a rough sketch of the emergent phases of caregiver needs that arose as we continued our synthesis of the data. We explore these rough ideas in more refined detail in the subsequent Design Applications section.

THEMES #3 SYNTHESIS - DESIGN SCENARIOS TO SERVICE MAP

Key: CG = Caregiver | CR = Care Receiver

There has been a significant amount of great work done on studying the vertical relationship between the caregiver and care receiver, or the caregiver and the health system/medical professionals. In our study, we were interested in beginning to think more horizontally across caregivers and their peer networks, and how those forms of support and information sharing may possibly lead to the design of the worlds first social tele-health system that is able to address the needs of families as populations become more spread out. One of our insights, aside from the dual nature of caregiving needs, was the understanding the need to work alone, and at times to work together, and why. Many of our caregivers experienced some form of isolation; almost all expressed some desire for more support or information in varied areas. Most expressed the fact that when they began their caregiving experience, there was little readily-available information to help them navigate their new role; for many, it still is ad-hoc learning. Whats interesting is the proposition that this process of individual learning and coping is, in some ways, useful to the eventual growth of a caregiver and the connection to the community if adequately facilitated by the availability of support resources when the caregiver is ready to ask for and accept help.

01. ACKNOWLEDGEMENT (OF DISABILITY/ILLNESS/SITUATION; OF CAREGIVER) How to understand the problem/situation? How to address guilt, fear, helplessness, or hopelessness? How to resolve conflict between CG and CR? How to address conflicting cultural perceptions or stigma? Examples from research: doors (Ovet) Merja lack of information (swapna, ravi) Medical diagnosis Unavailability of any other option

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02. ACCEPTANCE (OF IDENTITY) How to find the silver lining beyond despair? How to share the caregiving condition externally, early and positively? Examples from research: Baby on Board - Lauras ability to let people know about her daughter Satus anger at losing her dreams Accepting the responsibility (e.g. India: of the oldest son/ respecting the orders of older sibling (Dr. Dey/Janet). Finland: marital responsibilities (Lake Group, M2) ) Accepting the changing status/ role reversal (Ravi, Hema, Brig.) Accepting the new roles (e.g. Satu: from newlywed to cleaner, cook, nurse, lover, etc..., Brig., Ravi- from paid job being selfemployed consultant) The effect of pre-care relationship (Dr. Dey, Devi with her grandfather, Minna)

03. DAY TO DAY COPING (CARE RECEIVER NEEDS) How to create a safe environment... on the go? How to create a chain of support? Examples from research: Laura finding her baby daughter crawling on a frozen lake during a visit to family Devis bathroom crisis Teeth or food (Brig) Facing the music around the clock (Brig) Dementia Dance ( ARDSI observation)

How to provide help that will be utilized by caregivers? Examples from research: Suicidal caregiver (Nilanjana) Support organisations allow strangers to connect (CG Leisure Group, Rehab camp; Ilkka&Liisa, Holidays Sirpa O., ARDSI Nibedita) Online information ( tech-savvy in india, younger demographic in Finland)

07. REDEFINING RELATIONSHIPS (WITH THE CARE RECEIVER/ SECONDARY CAREGIVER) How to allow CR to live with dignity, visibility? How to create a new relationship between CG and CR? How to create a space for familiarity... with places and experiences that no longer exist? How to introduce a sense of play instead of duty? Examples from research: Devi and her grandad picking her up from elementary school and now college Memory journeys and water buckets Stacking toys Singing Rabindra songs Childhood memories

06. NEW RESOURCES/COMMUNITY How to break the ice and connect? How to understand effectiveness of support? How to enjoy the moment? How to prioritize the small moments? How to distract yourself? How to get practice tips? How to find/create/engage new caregivers? How to feel you did the right thing? Examples from research: Laugh Indicator ARDSI CG Leisure group Diaper talk, kettle holders, nice shoes Community Care in GOA Music

04. CRISIS (TRIGGER POINT TO SEEKING HELP) How to not snap? How to address a caregiver snapping? How to forecast a snap? How to create stretchability and resilience? Examples from research: Rubber band effect (Liisa) Blinders (Lake Group) Hoover vs birds (Lake Group, Sirpa M.)

08. PERSONAL SPACE AND WELLBEING (OF SELF CG) How to create personal space? How to encourage CG to take action for own wellbeing? Examples from research: Stairs Sauna (Lake Group, Minna) Exercise buddy Distraction (German p. 36 soap operas, music (Minna), books (Ravi)) Blogging

05. OUTREACH (TO FIND/ENGAGE WITH RESOURCES) How to find resources? How to communicate caregivers need help?


OP V.

UN RT PO

During a presentation of our work at the London Design Council just two weeks after the end of our fieldwork, we were approached by several key people who asked us how we were able to produce such an advanced level of work and analysis in such a short period of time.

AP YM IT

...

OPPORTUNITY MAP

THE DATA HAS TO FLOW FOR THE DATA TO BE ACTED ON IF THE DATA IS NOT ACTED ON, WE HAVE NO WORK GATHERING DATA IN AND OF ITSELF IS UTTERLY USELESS
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V OPPORTUNITY MAPPING

KNOWLEDGE TRANSFER
DEVELOPING INSIGHTS AND TOOLS FOR KNOWLEDGE TRANSFER
Its not enough to simply produce research. Design ethnographers (or design researchers) face an added requirement of work that is actionable. Plowman, Prendergast & Roberts (2009) wrote compellingly on the heightened value (and requirement) of research within a commercial context: ethnographic liquidity. Within the context of industry, ethnographic research has different demands placed on it and different gauges are used to assess the relative success or failure of an ethnographic project. A key demand placed on ethnographic research in this new context is that of immediate relevance. Equally, multiple stakeholders expect the research to be actionable. The term actionable refers to the requirement that the research must be problem-directed and result in an analysis that produces results that are easily consumed, understood, and acted upon by other stakeholders in an enterprise (for example, research that produces engineering requirements leading to product specifications). [T]he impact of ethnographic research in the context of large organizations, and beyond, can often be impaired by issues of circulation. Creating outputs that travel well is all important to developing what we call ethnographic liquidity, that is, the ability of research to be converted into something of value by its audiences. Therefore, another way of thinking about the actionability of ethnographic research is through the lens of liquidity. If research activity and its output is liquid, it is readily exchangeable. The research creates debate, is able to inform existing activities, and creates the basis for new endeavors. Liquid research will perform different functions for different members of an organization, because it is multivalent and contains different layers of utility. For example, engineers and designers might focus more on design principles as a means of guiding their work. Marketing may take more note of needs and compelling ways of telling their business story. In short, the best ethnographic research in an industrial context is research that has continued resonance and meaning. In essence, there are two competing demands placed on ethnographic liquidity. First, the research must be conceived and conducted to meet current organizational objectives. Second, the research must have prolonged and ongoing relevance for the organization. (p. 35-36) This section introduces the opportunity mapping tools that our research team developed for ethnographic liquidity, in order to contextualize the research beyond an anthropological audience and to make it more accessible and clear to other audiences within the company, whether design or marketing. The subsequent section, Design Applications, will explore in-depth the individual stories introduced in this overview.

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V OPPORTUNITY MAPPING

ETHNOSPEAK GLOSSARY
improvisation to innovation: A term used to connote the opportunity of individual strategies for coping which can lead to innovation, if scalable ethnographic liquidity: The ability of research to be converted into something of value by its audiences opportunity map: A tool used to frame research for design relevance service design map: A type of opportunity map that identifies a user journey across time space; in our work, used to convey experiences relevant to designing for present needs system design closeup: A detail visualization of a key story on the service design map that provides more context on the needed design scenario system map: A type of opportunity map that revisits the user journey by mapping actions, behaviors, barriers and perceptions across systemic categories design principle: A guiding characteristic of recommended design qualities or objectives design concepts: Proposed design solutions to a given scenario

(informal/family) Caregiver (CG): Refers to nonprofessional individuals who provides care for a family member or other close person who cannot cope on their own due to illness, disability or other special need for care Care receiver (CR): Refers to the individual receiving care from the caregiver content analysis: The review of data to identify themes, insights or trends. A content analysis method may also include coding, which is identifying and organizing data into specific categories harvest session (group based analytic working session): Content analysis performed within a group setting to deepen understanding across the research team themes: refers to the basic categories developed either pre-coding or in the initial phases of content analysis (note: this differs from what Intel generally refers to as themes, which we call insights see below). Insights: specific key ideas within thematic categories Trends: Patterns of knowledge, behavior, or ideas within or across insights Bridges: A term used during system mapping which refers to categories that are understood or perceived as bridges, or coping resources, by participants across the research pool Barriers: A term used during system mapping which refers to categories that are understood or perceived as barriers to coping or caregiving, by participants across the research pool

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V OPPORTUNITY MAPPING

p. 41

V OPPORTUNITY MAPPING

TIPS AND TRICKS

During a presentation of our work at the London Design Council just two weeks after the end of our fieldwork, we were approached by several key people who asked us how we were able to produce such an advanced level of work and analysis in such a short period of time. In reflection, here are some of the considerations that allowed us to do so: ETHNOGRAPHIC LIQUIDITY: From day one, we were aware of the needs of our multiple stakeholders (the client, our university, the wider Hothouse cohort, our participants) and consistently spent time identifying the core purpose and audience for each stage or work or piece of output. Imagining who would be interested in a particular piece of work and how to better engage someone into being interested kept us on our toes to be concrete and specific. COMPARTMENTALIZATION: Research is often many sprints within a marathon of work. To maintain momentum and stamina, the team needed to learn to compartmentalize not only our work but also our thinking. Like any process its important to understand what type of mental perspective is needed. While we may have individual inclinations, we learned to keep pace together when we were coding, we focused on being objective, specific, and accurate in order to overcome the natural complexities of data across cultures and languages. When we were in the middle of synthesis, we learned to champion storytelling rather than stories we couldnt fall in love with any particular narrative, but rather learned to see how individual narratives were stronger in relationship (whether complementary or in contrast). DYNAMICS: We identified natural leads and found ways to augment their strengths while we had field leads who were the native researchers within a country, it was also important to have an objective project lead that travelled and managed across sites. This significantly helped with compartmentalization and efficiency in order for the team to focus on one step at a time, it was necessary to have one team member looking ahead strategically to understand how to lay the groundwork for success at the next stage. Native and non-native researchers worked together to ensure that we werent cultural tourists, but to also make room for the valuable insights of cultural strangers. FLEXIBILITY: We plan, and plan room to allow for natural disasters, participants changing, and new opportunities in the field. Even for client calls and research designs, we planned and practiced for ideal scenarios as well as had backups scenarios ready. Often, fieldwork made us resort to solutions beyond our range of plans, but the process of anticipating change made us more resilient. Most importantly, during analysis, the ability to embrace both digital and analog methods of content analysis led to the development of our opportunity mapping tools which helped us place massive amounts of data within an accessible and clear information design strategy. ENERGY AND LABOR: We didnt believe in unnecessary paperwork. We had a saying that something should not only have enough validity to stand on its own feet, but also be able to move far enough to start a conversation across the room. In this way, we developed not only a timeline tool to help understand day-to-day research activities and objectives across Finland and India for our internal team, but also created successful communication tools that sparked the imagination and objectives of our client. FUN: We embraced the fact that we were a former journalist, a fashion design professor and a serial entrepreneur. This often meant very diverse, and sometimes challenging, perspectives, but also created a constant sense of fun and surprise about what we each would bring to the table (or what our research would bring to us).

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V OPPORTUNITY MAPPING

4 STEPS DESIGN RESEARCH

4 STEPS TO ACTIONABLE DESIGN RESEARCH
1. 2. 3. 4. Relevant > What is relevant to the audience you are designing for? Salient > What/who is on their mind? When is it on their mind? Appropriate > What solution (individually, culturally or otherwise) fits and why? What doesnt fit? Actionable > What is the trigger point to engage someone from understanding the possibility of an appropriate solution and adopting it?

p. 43

CARER SERVICE graphic TITLE MAP

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V OPPORTUNITY MAPPING

SERVICE MAP
BENEFITS
SERVICE DESIGN MAPPING USER JOURNEY. Identify relationships of experiences across time-space for business exploration PLOT KEY DATA POINTS: Key phases Individual stories/needs Prominent business opportunities

INSIGHT: In caregiving, design is a package deal

SERVICE DESIGN MAP DESIGNING FOR THE PRESENT: Benefits: Connects relationships across time-space (marathon) Identify triggers for action Maintains the Integrity of individual needs/voice Provides a clear emphasis on design needs

p. 45

FRAMEWORK AND RATIONALE: DISCUSSION

Our team was tasked to understand three things during our study: WHO are the carers? HOW do they cope? WHAT is culturally appropriate?

It went on like that, but what I want to say is this, every doctor in a village or whatever it is, he has done an MBBS (Bachelors of Medicine and Surgery) course. If this little thing is there that he understands this much that the caregiver and the Alzheimers patient is a package. Both are interacting during the 24 hours and all that. So the mental health of the caregiver is as important as the condition of the patient whichis what you are treating. Brigadier Bhattacharya, a spousal caregiver in Kolkata, India Our analysis, as represented in the service design map, show two continuums of need: caregiver (CG) needs and care receiver (CR) needs. Often, one is more salient than the other, even if both are present. There are times when the needs are mutually shared and beneficial (the center line). The service design map not only identifies what is relevant (in fact, every point on the map is relevant), but more importantly, when they are salient. This service design map shows the phases (weve identified acknowledgement and acceptance, coping, crisis, community, and self care) in which particular needs are top-of-mind for the caregiver. The subsequent opportunity mapping tool, the service design close up, identifies the context of these trigger needs, which leads to an understanding of what solution may be appropriate and actionable. Its useful to note that developments in later phases, such as the peer support and information sharing in the community category, may substantially impact the caregiver-care receiver (CG-CR) relationship in the coping phase to allow for new coping strategies, which, if successful, additionally impact the ability and opportunity of the caregiver to consider self-care strategies. An important insight from our research was that although caregiver self-care was a prioritized original research focus, the opportunity, appropriateness, and actionability of selfcare strategies isnt generally salient until after the prior needs in the service map have been met or resolved.

In particular, the question of how do caregivers cope was significant in our desired outcome to understand the role of technology in strengthening, augmenting or innovating these coping and support strategies. Interestingly, an initial aim of our research was to identify and understand how to improve caregivers own wellbeing, health and quality of life. However, when we directly questioned caregivers, whether in Finland or India, with questions relating to their well being, their own plans or hopes for themselves and their futures, we were often met with confusion or a blank stare. As one participant, a professional trainer offering rehabilitative courses for caregivers, noted: when you ask a caregiver how they are doing, they will often reply with how the care receiver is doing. If you look at our service map, we had hoped to identify strategies for self care of the caregiver. However, although this may be relevant for the caregiver, it isnt immediately relevant. In fact, its often the last thing on their minds. In order to design appropriately and well for caregiver needs, designers need to understand its a package deal. Just as caregiving is often rarely done in complete isolation, its also difficult to separate the needs of the caregiver from the needs of the care receiver its an important nuance to eventually be able to do so, but the two needs are often entangled and competing.

p. 46

SERVICE MAP CLOSE UP

.

BENEFITS
SERVICE DESIGN MAPPING - CLOSEUP USER JOURNEY. IDENTIFY DESIGN NEED THROUGH KEY STORY CONTECT INSIGHT IN BRIEF: Clarify participant context and design scenario for each trigger area; suggest intervention

Provides: Design Scenario Current Context Major resources (bridges) & barriers Needs Associated research insights from affinitizations

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SYSTEM MAP
DESIGN FOR THE FUTURE| SYSTEM DESIGN MAP| Bath
PARTICIPANT POOL PERCEPTIONS

The questions are changing: How will they cope? How is culture changing? SYSTEM MAPPING DESIGNING FOR THE FUTURE
USER JOURNEY WITHIN SYSTEM CONTEXT PRESENT OPPORTUNITIES TO FUTURE TRENDS CONTEXTUALIZE participant experience within wider social system to identify opportunities to augment, strengthen or design for future innovation Provides a view of improvisation vs innovation (what is scalable): Design at the 1.Individual 2.Community 3.Future

BARRIERS (CURRENT)

(IN) Cultural gender barriers preventing caregiving. Broken chain of support. Poor safety design of doors. (C , F) Spaces and items for safety and dignity at home and on the move.

BATH (HP08) DEVI, 20 GRANDFATHER, 84

BRIDGES (CURRENT + FUTURE)

(C, F) Establishing constant chain of support and safety (from domestic help to neighbourhood aunts). (F) Cultural hierarchies changing: guestioning authority, adapting Western norms.

MEDICAL ROLE CG IDENTITY

CONNCTN CATALYST

NEW ORG NEED

CULTURAL HIERARCHY

REMAKING CULTURE

CG WELLBEING

VERBAL COMM

NONVRBL COMM

SPACE & OBJECTS

CG SILENCE

MEDIA PUBLICITY

PRE-EXIST RELATIONS

CGIVING DEFINITION

BURDENS

CG-CR PERCEPTN

FELLOW CG

PEER SUPPORT

SYSTEM DESIGN MAP>> Revisit individual narratives, in context, by plotting detailed, individual participant design scenario, resources and actions within the larger system: Major forces/concerns based on content analysis Inter-relationships within the system Patterns of perception: Barriers vs Bridges Potential for innovation: Where former barriers are being bridged what could be, if scalable.

MEDICAL ROLE

CONNCTN CATALYST

NEW ORG NEEDS

CULTURAL HIERARCHY

REMAKING CULTURE

CG WELLBEING

VERBAL COMM

NONVRBL COMM

SPACE & OBJECTS

VISIBILITY, INCLUSION

Who will be the carers?

CG IDENTITY

CG SILENCE

MEDIA PUBLICITY

PRE-EXIST RELATIONS

CGIVING DEFINITION

BURDENS

CG-CR PERCEPTN

FELLOW CG

PEER SUPPORT

X U

DESIGN FOR THE FUTURE

participant pool perceives theme as a bridge participant pool perceives theme as a barrier VISIBILITY, INCLUSION ORG & BURCRCY

TOUCH & TECH

TOUCH & TECH ORG & BURCRCY

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FRAMEWORK AND RATIONALE: DISCUSSION

Designers and business needs to respond dynamically to changes that are occurring at a rapid pace as well as to large-scale changes that may be moving incrementally but meaningfully toward a massive potential shift in user context. DATA IS NOT KNOWLEDGE both the service design map and the system map facilitates the ability to recontextualize existing data into multiple scenarios design for the present and design for the future. In the system map, we revisit the individual user journey around a particular need in detail, mapping the participant actions, behaviors, and perceptions against a larger social system (the 21 themes we identified during our affinitization that seemed to be generally present for caregivers across our research).

As more needs and courses of action are mapped over and against each other, it becomes more apparent not only high-traffic thematic categories that require intervention, but also helps relate courses of action, networks, obstacles and resources. By paying attention to where an individual improvised solution is able to turn a generally perceived barrier (1st level of information) into a bridge, we begin to notice opportunities for future innovation, if the individual solution is scalable.

PERCEPTION IS EVERYTHING
Discussion In Finland, we learned that 2/3 of the caregivers who were eligible for state0funded caregiver holidays never used them. As one of our team members astutely noted, its not enough to simply provide a solution its important to provide a solution that will be used. In the following section, we carefully detail some key experiences of caregivers, how they were able to address them, and how they werent hopefully providing a view on present and future opportunities to design relevant, salient, appropriate and actionable solutions.

Within the system map, we present four additional levels of information: The first level is the general perceptions of the participant pool: Did the participant pool generally perceive a thematic category as a barrier (a challenge or obstacle to coping) or as a bridge (a resource enabling coping)? The center area focuses on the participants whose experiences directly intersected with the identified need/trigger (such as safety). Within this central area is the next level of information, which is what the individual participant(s) perceived as a current barrier while trying to address this specific need/trigger; the accompanying text specifically describes these barriers. Following this is the third and fourth layers of information, which identifies and describes present and future bridges enabling coping by either circumventing, mitigating or addressing the previously identified barriers.

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IGN ES I. D V

NS TIO ICA PPL A

She was the only woman in a room full of white hair of spousal carers, who did not have white hair she had long, long brown hair. She just seemed very comfortable to be in her own skin. We came to know much later that like the rest of the participants she was also a spousal carer but unlike them she was a newly-wed.

...

VI DESIGN APPLICATIONS

DATA is not knowledge

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CARER SERVICE graphic TITLE MAP

p. 52

APPLICATION

VI DESIGN

PHASE 1

ACCEPT
WHO IS THE CAREGIVER
Satu was a participant at Lake Group, a remedial course for family caregivers ; she was the youngest woman in that room, the only woman in a room full of white hair of spousal carers, who did not have white hair she had long, long brown hair. She just seemed very comfortable to be in her own skin. We came to know much later that like the rest of the participants she was also a spousal carer but unlike them she was a newly-wed. When our researchers asked the participants, if any one wanted to volunteer for a followup interview, Satu immediately raised her hand and exclaimed that I am going to be selfish and say that Id be happy to this interview. Satu is a 56 years old Finnish woman who had to become a spousal carer within a year of her marriage. Her husband has four grown up daughters from the previous marriage the youngest is about 36 years. Satu has a grown up daughter as well. All the daughters live relatively far, so she is the primary caregiver of her husband from October 2010 onwards. She was very very angry in the beginning as she realized that all her cherished dreams were about to fall apart. At the very beginning I noticed, that I was really angry and I started wondering who am I angry to. Like of course I wasnt angry to (my husband), he cant help it. I cant be angry to myself, since I cant help it either. Then I realised that I was angry, when I had Or WE had Somehow built that life in a way like, okay, then well get married, then we go to that and that trip, then we do this and that, then we watch this and that. So we got loads and loads of plans and all those plans were made assuming wed both stay healthy and in the same condition And then when (my husband) suddenly got sick and we had to re-think everything And before I adjusted to that, like alright, this is how it is, we didnt go there, we didnt go there or there. Probably cant go there either, but maybe we could go to a summer cottage once (my husband) learns to walk again. There we can go. It took her some time and re-thinking to see the silver lining in the new situation , accept the new role positively and dream new dreams for herself and the her husband. And I thought about that, took a pen and paper in front of me and started thinking, theres no damn way theres just negative sides in this, there has to be something good into this as well. Like think! And then I realised, somehow I just realised that (klicks her fingers): Yay! This is the first time in our lives we have time for each others 24 hours a day. I dont have to go to my shift work; (my husband) isnt doing his things., So now we have lot of time together and we can do things we both like! () So even if it seemed like there was a lot of negative things there at the beginning, now it seems theres something positive about this as well. Maybe the scale might even be in balance... Brigadier Bhattacharya is an Eighty-six years old spousal care-giver from Kolkata, India; his wife was affected by Alzheimers in 1994 although it was formally diagnosed in 1996. He still regrets and blames himself for his lapse in observing and acknowledging the signs of the disease. In hindsight, I realized that it was just that in my subconscious mind, I was totally unable to accept that Sukla could ever have any mental impairment. Not a person like her!. Today he accepts care-giving as the mission of his life and writes in the preface of his book that care giving of Alzheimers patients need not be struggling through the storm only, but, it is possible to enjoy a bit of dancing through the rain as p. 53 well.

DESCRIPTION OF PHASE
ACKNOWLEDGEMENT & ACCEPTANCE Our field research shows that caregivers take time to acknowledge and accept their loved ones are affected with degenerative illness and need full-time care. They also take time to accept their care-giver status. During our research, we found out that in Finland, the nature & status of care-giving is too broad to define, - .. it doesnt have to be a relative... Either in their own home or then at the home of the one theyre taking care of... Someone who has the overall responsibility of the caring. Its a really broad term. Caregiver can be the one who visits daily to take care of some errands, so that the client copes in their home, but they can also be the kind of 24/7 clients who need treatment all the time, so its really broad. I see it as a really broad term. In Finland a lot of informal caregivers choose not to have a formal agreement with their municipalities, although they are entitled to a lot of support and benefit from their respective municipalities. They find it very difficult and sometimes disgusting and humiliating to navigate the bureaucracy and seek help from authorities. In India, traditionally family members step in to offer care-giving and senility is accepted as part of normal aging process. So the nature of care-giving is often not acknowledged even by the extended family. Caregivers often find it difficult to share either the condition of the care-receiver or their own situations with the extended family and friends due to lack of awareness and perceived stigma attached with dementia . Our research highlights that in India even medical professionals tend to not give much importance to the care-givers needs. New caregiver status often leads to accepting and acknowledging of new identity within family, workenvironment and community; thus this phase can have a number of possible design intervention moments. Some of the main caregiver needs in this phase include:

acknowledging new responsibility, able to maintain positive outlook, connect with the new reality and finding acceptance internally and externally.

WHY THE ORANGE CIRCLE IS RELEVANT? As mentioned earlier, this phase offers a lot of opportunity for design intervention. Malla Heino introduced our researchers to a new program developed by the organization Omaishoitajat ja Lheiset Liitto (Caregivers and Close Ones Association, Helsinki, Finland), which is a coaching program named Ovets or Doors to help those new to care-giving. .. this project is designed to coach .. those carers who have just become aware that they are in a caregiving situation. And this tries to empower them and give them some basic information about caring, about services, but also about how to care about themselves. . this is one way of empowering them to give them hope for the future. The design opportunities emerge both in recognizing and preventing the barriers to hinder the acknowledgement and acceptance of the role positively and facilitating the process. Early and effective interventions could lead to effective management of the care-giving situation and significant wellbeing of the care-giver. The main question The Baby on Board story evokes is: How to design convey the condition/status of the care-receiver to the outside world positively and with dignity?

PHASE 1 ACCEPTING

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ZOOM IN ON BABY ON BOARD

Next we are going to zoom into one design-intervention moment in this phase Baby on board. Baby on board- HOW to make caregiving public+positive EARLY? Laura is a Finnish mother and the informal caregiver of her 7-year-old disabled daughter along with her husband. Her family includes another daughter aged 6. Lauras and her husband chose a home in a suburban neighbourhood shared by other families with small children; As I start walking towards the interviewees home, I walk across the play ground. There are swings, a slide and a sandpit there. Few toys are lying around as well, though there are no children playing outside: a plastic bucket and a truck. The area appears to be preferred by families with small children. There are strollers and small bicycles almost on every yard I pass. The ease of a child playing outside is not so simple for Lauras daughter as she has a tendency to run away. Laura has been able to create an informal chain of support around her by sharing information about her daughters condition with her friends; her openness and sharing with others early prevents misunderstanding: Another people in Lauras support network are her friends and the doctors. Laura also says that she tells about her daughters condition to new people in really early stage, so that they dont have to wonder why her daughter is a bit different. Brig Bhattacharya from Kolkata, India tried to create a similar invisible support network around her ailing wife, from the moment she was diagnosed with dementia. He writes in his book that:

. Immediately on diagnosis of Dementia of the Alzheimers type in Suklas case, I informed all relatives and friends and colleagues .Over a period of time, I realized that we should throw an invisible protective cordon around her, without her knowledge, so that she did not suffer from rejection and humiliation at any time. This did not mean isolation but full exposure to her existing world, without having to suffer from any misunderstanding. She should feel that she belongs to the mainstream, is wanted by all around her and should have as much say as before, regarding things happening around her. A difficult process, but it must be strived for. NHS in UK provides the expectant mothers with a badge saying Baby on Board, which helps the pregnant woman, convey her medical condition non-verbally to strangers and society at large without feeling awkward and embarrassed. Also it allows strangers to offer her assistance like seats in a crowded bus or tube without being too personal. It is wonderful way to share a delicate and vulnerable physical condition positively though an appropriately designed object. How can we design something similar to convey care-receiving/care-giving status non-verbally to others? ASSOCIATIONS The design opportunities of for this situation emerge both in recognizing and preventing the barriers and strengthening and facilitating the bridges

BARRIERS The barriers creating obstacles for The baby on Board scenario are related to: New caregiver identity: Caregivers encounter problems in recognizing and accepting their new role, re-defining their care-giving identity and conveying the same appropriately to the larger society. Caregiver silence: Caregivers have difficulties in recognizing and admitting their new care-giving responsibility until much later. Media: Media can create a distorted picture of care-giving and societys expectations. For example, Swapna mentions that in India newspapers prefer to publish the problems faced by the caregivers, instead of how they cope and survive. Cultural Hierarchy & Values: In India, an offspring is expected to take care of the parents and often a family member is actively or passively chosen to take the responsibility of care-giving. In a lot of cases, care-giving becomes a shocking and difficult reality for the primary caregivers, especially for male spousal caregivers. Caregiver + care-receiver new perceptions: Caregivers find it difficult to identify the new role of care-giving and often they need to cope with non-acceptance and mis-behaviour of the care-receiver. BRIDGES Bridges creating the opportunity spaces in The baby on Board scenario are: Caring + caregiver: This allows an opportunity space is to help caregivers evaluate and decide what is important in the relationship with the care-receiver and re-configure the relationship. Visibility & Inclusion: It will help to share the condition/situation to larger society and integration of both the care-giver

and the care-receiver in the main-stream. Caregivers Wellbeing: It will reinforce the support system to provide overall well-being to the caregiver. Fellow care-givers: Caregivers need to identify fellow caregivers and seek support from them Medical role: To define what is essential support both the patient and the caregiver and provide assistance and support Touch & Technology: It presents a lot of business opportunities to create devices and systems of support to create an invisible cordon of safety and convey care-giving/care-receiving status. HOW TO MAKE PUBLIC+POSITIVE EARLY? >> TO SELF >> TO CARE-RECEIVER >> TO SOCIETY CONNECTED ASSOCIATIONS >> Self awareness and acceptance of identity >>care-receiver as a fellow caregiver >> Invisible safety through technology >> From stigma to positive sharing >>Sharing care-giving with peripheral ties CAREGIVING

COMMUNICATION SCENARIOS:

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PHASE 1 ACCEPTING

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APPLICATION

VI DESIGN

PHASE 2

COPE
BRIEF SYNOPSIS OF STORIES
In this phase we have four stories. Bath explores an experience in India, in which 20-year-old Devi (HP08) was a caregiver for her grandfather. In this story, the grandfather falls while in the bathroom, and because of cultural and gender issues, Devi is unable to help him. Frozen Lake is the story of Laura (AK10), who lost and then found her 7-year-old disabled daughter crawling on a semi-frozen lake in Finland. Teeth is the story of Brigadier Bhattacharya (AD03) who is the caregiver to his wife, who has dementia. He describes his pain at ruining her beautiful smile when he and his paid care attendants unwillingly needed to shove a spoon in her mouth in order to feed her during a prolonged case of lockjaw. A ride of granddad revisits Devi and her grandfather, and represents another type of coping how caregivers attempt to help the care receiver maintain a sense of identity, normality and possibility. In this story, Devi shares how her grandfather, a successful businessman, used to rearrange his schedule to be available to pick her and her brother up from school everyday when they were young. Devis grandfather has dementia today, and, although he does not remember his daughters relationship to him, he still continues to ask his driver to pick his granddaughter up from school even though she is now in college. They share a relationship, and a need to be needed, that remains robust even through the onset of dementia. RATIONALE OF WHY ORANGE CIRCLE IS RELEVANT We chose to zoom into the interrelated stories of Bath and Frozen Lake because they show two different, but common, scenarios caregivers face: the need to provide safety for their care receiver both within the home environment and away from it.

In Bath, Devis family lives in Bengaluru, a major city, but on the outskirts near a small village. Their home is an apartment complex with little personal interaction with other caregivers. This is a shared caregiving situation, with Devis parents as the primary caregivers, Devi and her eighth-grade brother as secondary caregivers, and Devis aunt (who lives separately) as a tertiary caregiver. This situation occured in their home apartment. Safety is often a concern and the family often worries about the grandfather running out. They have locks inside &outside the home. They also tell of another incident where the grandfather locked them out and they were able to get access using a ladder. He slipped in the bathroom the other day and the only person that was home was me. So how am I to there was just no way of me to help him out in such a situation... So I have to, we have a driver. We have a trusted driver actually. My dad was out at that time, I was able to find the driver and get him in, but other than that I would be helpless. He would just be stuck inside. And it p. 58 would have been a very dangerous situation.

APPLICATION

VI DESIGN

PHASE 2

COPE
DESCRIPTION OF PHASE
During our fieldwork, we often found our interviewees were most comfortable beginning any discussion of caregiving with a detailed description of the care receivers daily routines. Whether for spousal caregivers caring for care receivers who had experienced a stroke or parental caregivers for those with dementia, the consistency and familiarity of a routine was essential. We learned coping either could entail the difficulties of the constant attention required in maintaining the daily routine, or to handle exceptions that deviated from them. Often, primary concerns revolved around two key areas: eating and safety. In our time with our participants, we learned that most caregivers could recite the types and amounts of food their care receiver was able to eat, including the time to the minute that would be required to feed the care receiver. We learned about the scares associated with a care receiver declining food because of preference or illness, and the triumphs associated with being able to creatively come up with a nutritional substitute that could keep the care receiver alive. We learned about one care receivers propensity for salted Lays and two bananas at lunch, as well as the fact it took one and half years of experimentation to get him to resume eating bread. Likewise, many of our caregivers cited care receiver safety as a primary concern both Laura, a caregiver for a young disabled daughter, and Devi, a twenty-year old secondary caregiver for her beloved 84 year old grandfather, spoke less about being guardians than guards. Originally, we had wanted to explore coping strategies related to the quality of life for the caregiver; instead we found that these immediate basic requirements of coping with the care receiver needs were the most salient for daily coping.

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PHASE 2 COPING

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In Frozen Lake, Lauras family lives in a suburb of Tampere, a major city, in a single family home in a community shared by other families with small children. Laura shares caregiving with her husband as she has a disability; the couple also have another daughter, aged 6 who helps watch her sister. Lauras mother sometimes babysits. There are strollers and small bicycles almost on every yard our researcher passes. Theres a busy main road nearby, but the row houses are positioned in a way that creates a sheltered yard between the houses. Theres a childrens playground in the yard, where there are swings, a slide and a sandpit there. The ease of a child playing outside is not so simple for Lauras daughter. So we have to keep an eye on her constantly, since shes running away from the door and the gate and where ever she can So its pretty constant Guarding her. Although their home has many locks and gates inside and outside the home for safety, this situation occurred outside when they were visiting Lauras in-laws, who live on a farm near a lake. So for 5 minutes Laura thought that her oldest daughter was with her husband and her husband thought she was with Laura. And they found her crawiling on the icy lake It was April or something, so

the shores had already melted but there was still ice on the lake And she was crawling there on the ice in her overalls. If she gets in the water and under the surface, she doesnt know how to get up, since she has no sense of direction So it was a wonder she didnt drown there DESIGN SCENARIOS Currently, the caregivers in these scenarios are aided by certain bridges that aid the provision of safety these include a chain of support that caregivers can call on for help, a system of physical locks that limit mobility, constant attention to the care receiver, and, in the case of Devi, the intermittent presence of paid staff. At the same time, there are persistent barriers that serve as obstacles to caregiving, which include stigma around the caregiving situation, the need to be away from the home for work, gender and cultural barriers that limit caregiving actions, social requirements, and lack of communication between caregivers. The design opportunities lay in not just creating a safe environment for the care receiver, but to do it flexibly. in homogenous scenarios in which both the care receiver and the care giver are at home together, mixed scenarios in which the caregiver needs to leave the care receiver at home temporarily, and scenarios, like Frozen Lake, where both parties are outside the home.

The ability to address these safety scenarios can significantly impact the caregivers mobility and connection to society. Without these certainties in place, everything from declining social connection or the inability to participate in work can occur.

CULTURAL IMPLICATIONS So why could grandfather? Devi not help her

As Devis father, Ravi, explains: Ok, I take care of him in some respects because hes a male and I have to I am of the same gender and the opposite gender, they can not do anything. But you have to see the society to contrast; the contrast is that the relationship versus gender contrast. Because hes a male and Im a male directly related to him so my caregiving would go a little more. While Devi, and also Devis aunt and mother, may have limited caregiving authority due to gender and social status, we have also learned they use teamwork in genered co-caregiving, where Devi will call upon her aunt to talk to her grandfather over the phone in order to lend her more authority, and how Devis position as a youth and a granddaughter also allows her more leniency in speaking directly to her grandfather.

HOW TO CREATE SAFETY, FLEXIBLY: FLEXIBLE SAFETY SCENARIOS: >> AT HOME: CG & CR >> MIXED: CR HOME | CG AWAY >> AWAY: CG & CR

CONNECTED ASSOCIATIONS (PULL FROM AFFINITIZATION) OR VOICES FROM THE FIELD >> Gendered Co-Caregiving >> Remote Care >> Reassuring touch >> Daughter begs, son spoons >> Community Care >> Familiarity Counts >> Light switches are simple

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PHASE 2 COPING

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APPLICATION

VI DESIGN

PHASE 3

CRISIS
CRISIS: SEEKING HELP
DESCRIPTION OF PHASE According to Kristi Kanel (2011), crisis can either be developmental or situational. Developmental crisis take years to develop and normally occur in transition phases as people move from one life situation or role to another. Situational crisis can emerge when unexpected and extraordinary events occur that a person has no way of controlling (e.g. crime, death, illness or community disaster). (Kanel K., 2011) We define caregivers crisis phase as the phase they reach the limits of their strengths the breaking point. They realize caregiving situation cannot continue as it is, and start to seek for and most importantly are willing to accept external help. In this phase caregivers are forced to turn their focus on themselves and their own coping. Kanel continues: In a midst of a crisis, a person is more receptive to suggestions and help than he or she is in a steady state. The opportunity in crisis lies in whether a person receives external help. Through crisis intervention he/she can stabilize a higher, more adaptive level of functioning, which leads to growth, insights and developing new coping skills. The danger is, that without help a person stabilizes lower level of functioning or worse nonfunctioning level, which may lead to fatal solutions: suicide, homicide or psychosis. (Kanel K., 2011) Also caregiver crisis can be approached both as a danger and opportunity, thus this phase is full of possible design intervention moments. Some of the main caregiver needs in this phase include: loosing tension, distracting, connecting and finding joy. SYNOPSIS OF STORIES In this phase we introduce you to four different stories: Rubber Band, Laugh Indicator, The Hoover/Blinders and Kettleholder. RUBBER BAND (AK02) story gives us a vivid metaphor of the mental stage Finnish caregivers are when applying to caregivers rehabilitation. We will dive into the details of The Rubber Band story later. LAUGH INDICATOR (AK02)story tells us how laughter can be used as a metric in rehabilitation process. According to caregivers rehabilitation instructor Annes experi ences, typical caregiver attending to the rehabilitation course has already passed the limit of exhaustion. During the first few days they are tired and introverted might even behave aggressively and be dissatisfied. But once the exhaustion cedes, humour, laugh and joy usually step into the picture. THE HOOVER/BLINDERS (HPAK01, AK04) story evokes a question: how to distract from caregiving? In Finland, we had a chance to observe a peer support session discussion on a caregivers rehabilitation camp. While encouraging the participants to prioritize, the instructor shares a personal story on how she managed to control her own eager cleaning habits and leave her hoover alone. As for The Rubber Band story, we will also zoom into the details of The Hoover/Blinders story later. KETTLEHOLDER (AK07) is a story based on research observations on how caregivers reach for their peers. While observing a caregivers leisure day organized by the local church, we notice that the interactions between former and current caregivers can be facilitated by activities, such as handcrafts in this case: making kettleholders out of old coffee packages.

RATIONALE, OF WHY ORANGE CIRCLE RELEVANT Next we are going to zoom into two stories about the caregivers crisis phase: (1) The Rubber Band and (2) The Hoover/Blinders. As mentioned earlier, crisis can be either a danger or an opportunity. Rubber band moment introduces us the idea and nature of tension. Tension can either push a person towards solutions and creativity, or pull him/her at the edge of individual strengths. The design opportunities emerge both in recognizing and preventing the pulling factors and exploiting and facilitating the push effect. Early and effective interventions of pulling moments on the other hand, could lead to significant societal savings. The main question The Rubber Band story evokes is: How to design for tension as an advantage? The Hoover/Blinders story encourages us to challenge and question our initial as- p. 63 sumptions. Before conducting the research we asked ourselves: What kind of information are caregivers lacking, what more should be provided? Our study in fact suggest that even though there are lot of barriers preventing the access to relevant information in both countries, in some scenarios caregivers might benefit more from distraction, information filtering and evaluating tools. The Hoover/Blinders story makes us ponder How to distract from caregiving?

PHASE 3 CRISIS

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(1) RUBBER BAND - HOW TO DESIGN FOR TENSION AS AN ADVANTAGE?

Anne is a woman on her 40s who runs an occupational health care surgery at a Finnish rehabilitation center. She is also one of the instructors of the caregivers rehabilitation course. Anne has witnessed many caregivers applying and arriving to rehabilitation, and describes us the triggers for seeking help by using a metaphor of a rubber band: Many times people come here when they already feel like they cant take it any more at all. Many times they describe they feel like a spring or a rubber band, which is about to snap. When theyve reached the limits of their strengths. Thats what this is quite a lot about. (110620_TR_ FIN_AK02_v2.pdf, 16, 00:17:29) Anne describes us the situation, where caregivers start to turn their minds away from their patients and realize they need to apply for external help. This moment has also been described in our other encounters, for example in India by Mrs. Nilanjana Maulik (AD02), who provides counseling and advices for caregivers of dementia patients. She shared a story of a nightly, heart stopping phone call from a suicidal caregiver who saw no other way out. Breaking point made her seek help. In another participant story, Swapna Kishores (HPAD03) case, tension and social isolation led to establishing one of the largest and most significant online resources on dementia and caregiving in India. Swapnas case is also an example of the coping strategies applied, when there is a gap in care and support systems provided.

changed situation/relationship and do not realize the burden it exposes them to. Many times caregivers are unable to share the burden due to: (a) their own expectations like Janet (HP11), who felt she could not complain about the burden, since she thought she was too young to complain. (b) family relationships like Minna (AK09), who feels she has to make sure not to burden her husband too much. (c) cultural values and expectations, which also contribute to the caregiver silence and are pulling them to the limits of their strengths. Perfect example of this was our participant Dr. Prasun Dey (AD07).

personal holidays and distance to patient and offer three monthly holidays for all the official caregivers. Yet only 1/3 of caregivers entitled to holidays use them. Why? Because of the problems in temporary care system. They either cannot find a temporary care for their patient or are afraid that his/her condition will get worse there (Merja, AK06). Providing holidays is therefore just a part of solution.

HOW TO DESIGN FOR TENSION AS AN ADVANTAGE? CONNECTING & DISCONNECTING SCENARIOS: Tools to connect with self Tools to disconnect from CR Ways to connect to community

Opportunities lie in redefining the caregiver care-receiver relationship, which can ease the burden and caregiver tension. E.g. in Satus (AK11, AKHP01) case the selfknowledge she gained from the caregivers rehabilitation camp made her redefine her relationship to her carereceiver husband. Our research suggests that to aid the processing of the crisis, the caregiver should be detached from his/her patient and home environment. This is what the concept of Finnish caregiver rehabilitation course relies on. In breaking point caregivers also start looking for new support and are more receptive of accepting help and advices. Help and tertiary caregivers can be found from surprising places as professor Chakrabortis (AD08) story showcases. He became the tertiary caregiver of a gentleman through a girlfriend of his son. Tension can be used as a connection catalyst, it can make you reach for your peers or other support networks, as usually happens in caregivers rehabilitation (HPAK01, AK02, AK03) or it can make you contribute to the community, if theres no one to turn to (Swapna, HPAD03). When designing for crisis intervention, designers should try to maintain an extremely holistic view. Solutions have to be applicable in caregivers everyday life, and in many cases, address both caregiver and care receiver. For example in Finland they have identified the caregivers need for

ASSOCIATIONS: Balancing CR protection and exposure On hold caregivers Anger of losing dreams Fear of judgement creating tension CGs own health as a trigger to re-evaluation

DESIGN SCENARIOS The design opportunities of the crisis phase emerge both in recognizing and preventing the pulling factors and exploiting and facilitating the push effect. The pulling factors or barriers creating the danger scenarios in The Rubber Band Scenario occur, when caregivers are not acknowledging or accepting the

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PHASE 3 CRISIS

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(2) THE HOOVER/BLINDERS HOW TO DISTRACT FROM CAREGIVING?

Sirpa (AK04, AKHO01) is trained nurse on her 40s, who is running a peer support meeting for a handful of spousal caregivers on a caregivers rehabilitation course in Finland. She is a regional manager of the national caregivers association and has developed a certain approach to leading these types of peer group sessions. She uses poems and peer quotes, and shares personal experiences to evoke conversation. Today she is encouraging the participants to prioritize, evaluate what is important and do less. She decides to share a personal story on how she managed to control her own eager cleaning habits and leave her hoover alone: I have to tell you one story about cleaning, since Ive always been very eager to clean. And Ive tried to reduce it now But for me that always been the kind of, that I can see the results of my work immediately, whereas in my job its not immediately that obvious. And then when I got married I only got married few year ago So my mother in law then gave me my husbands essay, which he had written on 7th grade and the topic of the essay was My Best Summer Holiday. And there was a sentence that said It would be lovely to sometimes wake up to the birds sing and not to the sound of my mom hoovering. So she gave it to me, since she knew I was an eager cleaner. Now every time I m about to start hovering I think about that birds sing and thats a way for me to leave that hoover alone sometimes. (110620_TR_FIN_AKHP01_AK_V1_C1.pdf, 7, transcript, 00:11:45) After a moment of shared amusement, Sirpa continued to explain how important it is to identify what is essential and what can be done less especially when spousal caregivers have usually ended up doing all the tasks their spouse used to do for the shared household. He also encourages to think where certain norms come from, are they setting expectations for themselves or is it a neighbour or a relative who is giving these orders.

DESIGN SCENARIOS The design opportunities of the crisis phase emerge both in recognizing and preventing the pulling factors and exploiting and facilitating the push effect. The barriers creating obstacles for coping in The Hoover/ Blinders scenario are related to caregivers accepting their limits, re-defining their caregiving identity and exhaustion, and recognizing whats important. Media and publicity can also be a barrier by creating a distorted picture of caregiving and societys expectations. For example in Finland the national caregivers association is trying to manage the public face of caregiving by requesting the local branches not to appear in media as complainers. Thanks to the strategy, caregivers are highly respected in Finnish society, but what are the individual costs? Do you feel able to complain, when others around you do not? Design opportunity space is to help caregivers evaluate and decide what is essential and what they can turn a blind eye to. Caregivers need to identify what is essential for their patients wellbeing, how to find balance between pre-care and current tasks, and what things they can overlook to gain more time for themselves. They would also benefit from tools and methods providing distraction. HOW TO DISTRACT FROM CAREGIVING? DISTRACTION SCENARIOS distract from self distract from patient distract from the societys expectations

ASSOCIATIONS Detaching from home Music: moment of relaxation Clean home means youre not struggling Flip side of social graces Cultural burden: respect the elderly

PHASE 3 CRISIS

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APPLICATION

VI DESIGN

PHASE 4 COMMUNITY
Our research suggests that in support groups, caregivers are encouraged to share their problems with professionals and fellow care-givers; they are not only offered professional help and suggestions, but they too are also able to help other caregivers. Most importantly, the caregivers feel better knowing that there are other people in the same situation especially if theyre dealing with the similar type of care-giving. A few years ago, I saw attending a support group meeting as a sign of weakness, as an activity that would be a waste of time at best, and a negative event otherwise. How very wrong I was. Many of us attending may be overwhelmed, but then there are others who have found ways out, and help us with suggestions. There is no judgment, no criticismwe understand each other in a way that defies description. Participating in the meetings gives us an opportunity to feel we are not alone in facing the problems, it gives a sense of perspective, and often a new insight. Each meeting moves us ahead. (090104_IN_HP03_Blog_Supportgrps_HP_v1_c1.pdf) In India, the nature and importance of care-giving at times are not acknowledged even by the family members: .the pain of it is not acknowledged by anyone. And acknowledgment is a very important part because it drives people into isolation when there is no acknowledgement. (110630_TR_IN_HPAD03_HP_v1_c1.pdf) There are only a handful of organisations that support to caregivers. For example, few ARDSI chapters organise monthly meetings for caregivers but the efforts are sporadic and irregular. Also most caregivers are not aware of different kind of supports available to them. A few individuals, organizations, and medical institutions have started to offer some online and offline support in the last three years.

COMMUNITY: SUPPORT
DESCRIPTION OF PHASE We define caregivers Community:support phase as the phase in which caregivers seek and receive different kinds of support from the community. Our field research shows that it may be in the form of rehabilitation course, information from fellow caregivers, formal counseling or new forms of assistance in day-to-day coping. Caregiving involves many stress triggers: acceptance of the changing nature of caregiving, changes in the family dynamics, household disruption, financial pressure, and the sheer amount of physical work involved. It can also trigger a host of difficult emotions, like anger, fear, resentment, guilt, helplessness, and grief. As the stress piles up, frustration and despair take hold and burnout becomes a very real danger. Family caregivers are most prone to burnout which can damage both physical and mental health; the demands of care-giving can be overwhelming, especially if the caregiver feels that they have little control or no control over the situation. I feel like a bird in a cage and a prisoner in my own home. Tiredness and exhaustion take me over gradually and unnoticed. I cant identify or admit it before Im burned out. I suffer from insomnia and memory cuts, the joy of life disappears, and my head buzzes like a bee hive. (110621_FO_FIN_AKHP01_AK_v1_c1.pdf) It is essential for stimulation and sustenance of the caregivers that they receive appropriate and adequate support from not only family & friends but also community. In Finland, the state has a strong policy framework to support informal caregivers. Rehabilitation courses, Leisure day activities and counselling sessions for family caregivers are regularly organised and strictly regulated by governmental organisations Caregivers rehabilitation courses start with an institution period, which means staying 9 days in a spa/holiday resort/other type of rehabilitation center. Institution period provides caregivers a secession away from home and from their everyday life. It brings clarity and with the help of professionals they can start to identify difficult issues. The period aims in gaining both physical and mental strength and offering peer support. ( 110620_FN_FIN_AK02_AK_v1_c1.pdf)

SYNOPSIS OF STORIES
1. NICE SHOES, DANGEROUS SHIRTS (AK07) CG Leisure Group is a summer leisure day organized for caregivers by the church and the national caregivers association, Omaishoitajat ja Lheiset Liitto, in Tampere, Finland. On the day of our observations, four former caregivers, two organizers on behalf of the church and only one current caregiver were participating. Our researchers found out that the meetings arent structured any way the leisure day usually consists of making some handicraft, spending time outdoors, bathing in sauna , swimming in the lake and barbequing sausages on the camp fire. The meeting provided the caregivers an environment to relax and the ex-caregivers did not talk about any care-giving related topics at all. One of the ex-caregivers included Saara ( who was participating for the first time and the only one with a current care-giving responsibility ) in the group by choosing to talk about the colour of her shirt: F4( one former caregiver) agrees and comments that Saara(F7) is wearing a very dangerous coloured shirt. She tells that she was wearing the same colour the other day and wasps were all over her. (110629_FO_FIN_AK07_AK_v1_c1.pdf) We call this a nice shoes effect where something as trivial as the colour of the shirt was used as a connection catalyst instead of any anecdotes or experience of caregiving. Our researchers found that the ex-caregivers did not mention anything related to care-giving at all except Saara raised her concerns related to her mothers diaper use. 2. DIAPERS (AK07/AK09)

for... (110704_TR_FIN_AK09_AK_V1_c1.pdf) Saara, a Finnish wom an in her 70s is thecaregiver of her 96-year-old mother. She was a participant in the CG Leisure Groupas mentioned in the story above. Here she met four ex-caregivers and two church staff for the first time. After a couple of hours when Saara was comfortable enough, she asked the next participant about how to get better monthly payments and after a moment of awkward silence the ex-caregivers responded and shared information about the use of diapers as a criteria for better payment: F7 tells they use diapers, but not the ones council provides, since her mom doesnt like those. She has to pay for the diapers herself. N4 tells her that nowadays council gives better diapers as well and suggests N7 should try to convince her mother to try them again. This particular story highlights the importance of receiving insiders information from fellow care-givers; as caregivers in Finland often navigate through complex bureaucratic process, these information provide them valuable guidance and support. 3. SING (AD08)

I know that music therapy has a tremendous impact, tremendous affect on the well being and the satisfaction of the members. Sometimes it so happened that Mr. Dutta plunged in a deep slumber or deep sleep when I am singing that song. And he loves to hear those songs which are old, old Rabindra Sangeet, not new. Very colloquial very common, this kind of... Now this is rainy season going on so I used to sing rainy season songs. In this way, I give little bit of help. This moment signifies the importance of contextual connection catalysts which can be used to relate to care-receivers in an engaging way. Being in the same generation and social group with Mr. Dutta, Prof. Chakraborty found out a novel way to help the care-receiver. 4. CHILDHOOD: WATERBUCKET, GAMES, TOILET (AK03, HPAD03, AD02, HPAD12)- HOW TO DESIGN FOR THE FUTURE THROUGH CHILDHOOD? Waterbucket is a story based on research observations about how care-receivers remember even the smallest details from their childhood. While explaining to caregivers how to prioritize and focus on the care-receiver, the instructor at Lake Group Rehabilitation course recollected her own experience as a nurse for a dementia care home. She narrated how evocatively dementia patients could recollect their childhood memories in great detail and how memory-journeys could be a source of joy for both caregiver and the care-receiver: Swapna Kishore(HPAD03) chose childhood games to keep her mother engaged and entertained; to her surprise she found out that her mother liked to play the games. She also used simple games as a tool to make the attendants understand her mothers condition: I had started playing games with my mother; the attendants saw my mother struggle with the same simple six-piece jigsaw every day, and began understanding the nature of the problem (retrieved from http://swapnawrites.wordpress.com/?s=attendants&searchbutton=go%21) Simple games associated with their childhood memories can entertain dementia carereceivers for hours end. In our group observations we found

Prof. Prafulla Chakraborty (AD08) in Kolkata, India became a tertiary care-giver to Mr. Dutta, her sons girlfriends father in a very unusual situation. He narrated the context to our research team: She came back to attend to her father leaving high salary, good amount. Her brother lives downstairs with wife and children, but the most pitiable thing she said, they dont even speak about fathers condition, not to speak provide money and all those stuff. And this girl, Rajashri, shes asking me every now and then, Uncle, what shall I do? My brother is misbehaving with my father, even obstructing doctors and counsellors to come to enter into my house. In this situation Prof. Chakraborty became a tertiary caregiver to this gentleman and his care-giving responsibility includes entertaining and engaging him by singing songs in his harsh voice:

Minna is a 51-year-old Finnish woman taking care of her 84-year-old mother. She herself has been a hairdresser and entrepreneur for 34 years, but is currently on a disability pension because she cant strain her right arm anymore. Minna doesnt have the official caregiver agreement with the city council, even though she would be entitled to the monthly monetary support from the government. Minna has managed to negotiate 3 pull-up diapers a day from her council even without the official caregiver status: Ive already got negotiated 3 pairs of pull-up diapers a day, which the municipality is paying

out that in ARDSI Kolkata centre, the day-care patients are provided with soft toys, simple game and drawing books to keep them entertained: Everything in the center was carefully ordered, with careful consideration to create a homey, vibrant, colorful environment which included books, toys, posters and photos of the community of the center. (110710_FO_IN_ HPAD12_HP_v1_c1.pdf) Brig. Bhattacharya mentioned during the interview that he could take care of his wife only because he was familiar with her childhood memories: You are maintaining her quality of life and then as you go along and she is not able to take on much, then you realize that you have to go back and apply in a receding manner the reminiscence therapy.. the brain recedes in there, backwards to the childhood. And to identify how, when, what stage of the brain is it now, what is the mental age, and if you are able to speak something which she can take or can relate to, she is very comfortable. ..At one time.....at an advanced stage the comfort stage maybe only. only fairy tales. Still we all... it will be perhaps some nursery rhymes she has heard when she was only a child. (110628_TR_ IN_AD03_AD_v1_c1.pdf) 5. DEMENTIA DANCE/ SWIMMING POOL OF CARE (HPAD12) In ARDSI Kolkata, our researchers found that they make the experience of care-giving visible, prominent, celebratory and inclusive and focus on dementia as a human experience: There is a (handmade poster) in a small box ( on the handmade wall-magazine) that describes Dementia Dance which includes: Do not argue; accept the disease; Nurture your physical and emotional health; Creative problem solving methods to be used; Enjoy the moment with

your loved one. (110710_FO_IN_HPAD12_HP_v1_ c1.pdf) It seems that the patients float in a Swimming pool of care; there is a constant flow of care for and around them: ..All clients were acknowledged and interacted with the staff were aware of their smallest movements and needs, often shadowing them and partnering together to help a client. (110710_ FO_IN_HPAD12_HP_v1_c1.pdf) 6. COMMUNITY CARE (AD01, AD11) - HOW TO DESIGN TO BREAK DOWN FAMILY/CULTURE? To solve the problem of growing number of patients of dementia and lack of adequate medical resources experts have suggested community care, a new model of intervention aimed at improving the quality of life of home-based dementia care-receivers and their carers, by enhancing their caregiving knowledge and skills, providing emotional support and maximizing care-giving resources . Dr. Indrani Chakravorty(AD01) stressed on the importance of the concept especially as traditional structure and values are undergoing transformation in India : .. women are considered as the primary caregiver all over the world and because of the emancipation of women, they are working in jobs outside. That means that the aged are left alone at home. That is a real problem we are facing and that is why we are now stressing up on this community care concept. ( 110713_TR_IN_AD01_AD_ V1_C1) Dr. Amit Dias (AD11) stresses that novel concept like community Care is important for India for a number of reasons: Because one, most of the people with dementia live with their families and so building institutions may not be the solution for them. One,... families will not want to put their loved ones in an institution because, one, of the stigma, and they still want to look after the elderly with whatever

problems they have, but they dont know how to look after them. Two, . We have 3.7 million people. So, how many institutions can they come up with even if you think youre going to put them in an institution? Three, everyone, even abroad, people are trying to deinstitutionalize people. Institutional care is very expensive, one, and not very high quality. If we can ..... have the families look after people with dementia in a better manner, improve the quality of care, I think that is the best solution. For a country like us, I think family care is important. WHY THE ORANGE CIRCLE IS RELEVANT? This phase offers a lot of opportunity for design interventions through understanding and using memory- journey and community care to create systems and services to support the wellbeing care-givers and the care-receivers. To understand the phase holistically, one needs to understand the dynamics of relationship of the care-giver and care-receiver through the lens of community support. The design opportunities emerge both in recognizing and preventing the barriers to community support that hinder the wellbeing of the care-giver and care-receiver and facilitate the process of supporting them positively. Especially, it is important to understand how community care and memory journeys can provide answers not only in the present but in the future as well.

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PHASE 4 COMMUNITY

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ZOOM IN ON CHILDHOOD: WATERBUCKET, GAMES, TOILET

Next we are going to zoom into one designintervention moment in this phase Childhood: Waterbucket, Games, Toilet. CHILDHOOD: WATERBUCKET, GAMES, TOILET- HOW TO DESIGN FOR THE FUTURE THROUGH CHILDHOOD? Waterbucket is a story based on narration by the instructor of Lake Group Rehabilitation Course; she described how dementia patients could recollect their childhood memories evocatively in great detail and how memory-journeys could be a source of joy for both care-giver and the carereceiver: I worked in a dementia care home for a while as well Was that when a person cant travel any more or even visit their home, then memory journeys are very nice! .. One can go as far as to the childhood home, and what was there on the yard and what was there when you opened the house door, what can you see there And people remember many things, starting from a water bucketthey even remember smells and that feeling They remember the sun on the skin. Swapna Kishore(HPAD03) chose to keep her mother engaged and entertained by using childhood games: At the toy shop, as I looked around for board games I could play with my mother, the shopkeeper was most helpful.

The game had to be simple enough in terms of its rules and visually, and it should work well with two players. Finally, I got us a Snake and LaddersBy the time I suggested a game to her, I was quite apprehensive. I gave her the first turn, rolled the die for her, moved her token (I simplified some rules). I took my turn. Her turn. Mine. She climbed a few ladders. She smiled... The staff of ARDSI Kolkata mentioned during our group observations that as the care-receivers start losing the memory of their adult life and recede to the memory of their childhood, they forget how to use a western toilet (which is usually a habit most Indians learn as an adult) and revert back to the childhood habit of using an Indianstyle toilet.

Caregiver Burden: Caregivers have difficulties in accepting the loss of the known human personality and a loved one. It also becomes very difficult to understand the memory journey, especially when they when language proficiency of the care-receiver is severely hampered. Cultural Hierachy & Values: In India, an offspring is expected to take care of the parents and often a family member is actively or passively chosen to take the responsibility of care-giving. They often find it difficult to accept the loss of a parent. Our research shows that care-giving becomes a shocking and difficult reality for caregivers, especially when the carereceiver no longer recognises them.

lot of business opportunities to create simple technology-based devices and products to facilitate and capture the memory journey as and when they happen.

HOW CAN WE DESIGN BY UNDERSTANDING CHILDHOOD? DESIGN SCENARIOS: >> ON THE MOVE >> FOR TODAY >> FOR FUTURE

CONNECTED ASSOCIATIONS >> Redefining relationships: role reversal >> Connection through games >> Familiarity through object, space, music >> Futurescaping >> Adaptive technology to augment memory journey

BRIDGES Bridges creating the opportunity spaces in Childhood: Waterbucket, Games, Toilet scenario are: Connection catalysts: opportunity space is to provide caregivers to understand and evaluate the memory journey through connection catalysts and to help them navigate the care-giving situation more efficiently. Space & Objects: opportunity to create sense of familiarity though augmented use of space and objects Non-verbal communication: Familiarity using memory journey as an inspiration can facilitate non-verbal communication through sounds, sights, tastes, smells. Textures etc. Touch & Technology: It presents a

ASSOCIATIONS The design opportunities emerge both in recognizing and preventing the barriers and strengthening and facilitating the bridges: BARRIERS The barriers creating obstacles for Childhood: Waterbucket, Games, Toilet scenario are related to: Pre-existing Relationships: Caregivers often feel lost when they cannot reach the depth of the early memories of the care-receivers. This problem is more complex when an offspring provides care for his/her parents.

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PHASE 4 COMMUNITY

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ZOOM IN ON COMMUNITY CARE

COMMUNITY CARE- HOW TO DESIGN TO BREAK DOWN (BARRIERS OF) FAMILY/CULTURE? Community Care is an award-winning alternate model of intervention based on experiments initiated by Dr. Amit Dias (AD11) in Goa. He argues that: .. it (the intervention) had to be community based since many patients with dementia and their caregivers were unable to attend health facilities due to mobility difficulties and lack of transport. ..This model ensured that more services (for example, number of visits or medication) were provided to those who were in greater need.(Dias, Dewey, DSouza, et al. 2008) ASSOCIATIONS The design opportunities emerge both in recognizing and preventing the barriers and strengthening and facilitating the bridges to improve the quality of life of home-based dementia care-receivers and their care-givers: BARRIERS The barriers creating obstacles for Community Care scenario are related to: Organisations & Bureaucracy: Caregivers often feel lost when they cannot navigate the organizational bureaucracy to seek support for effective care-giving: OPD ( Out-Patient Department).. even the thought itself will put people off. Seeing a person with dementia, standing in an OPD, waiting in a queue ..(where) you will be some 30th in queue. So that person with dementia will not be able to tolerate it. Caregivers will not be able to put up with the behavioural problems that would arise as a result of that. So they dont even want to go to an institute like that. (110712_TR_IN_AD11_AD_V1_C1.pdf)

Cultural Hierachy & Values: In India, trained carers are yet to be accepted at an equal level as family carers and they are treated differently than other medical professionals. Professionals like Mrs. Nilanjana Maulik is trying to trigger a change of this traditional mindset: All I do is inform the (family) carers that you have to accept this change of mindset. And at the same time I tell my carers that youre trained, you tell this is how it is done. You can. ( 110707_TR_IN_AD02_AD_V1_C1.pdf)

families with dementia with activities of daily living, and things like that. So they will go and visit the house, find out what the home environment is, find out who can be the possible caregivers. Its usually a job of only one principal caregiver who does everything for that person. We try to find out if somebody else can also chip in and help out in the care because its a long term process.( (110712_ TR_IN_AD11_AD_V1_C1.pdf) HOW TO DESIGN TO BREAK DOWN (BARRIERS OF) FAMILY/ CULTURE? INTERVENTION SCENARIOS:

BRIDGES Bridges creating the opportunity spaces in Community Care scenario are: Caregivers Burdens: Community carers are trained to support care-givers at their home by augmenting their care-giving knowledge and skills , for example they help elderly caregivers (of the community) who live alone with the care receiver in day to day care-giving. Peer Support: They are also trained to facilitate networking among caregivers to form supports groups. Caregivers Wellbeing: This successful intervention concept has been able to enhance the overall wellbeing of the caregiver by educating them about effective dementia management , supporting them in day to day care-giving and providing them with a channel to express their concerns. (Re)making Culture: The community carers not only support the primary care-givers but also assess who will be able to share the responsibility of caregiving among other family members: ..we develop these kinds of home care advisers who are non-medical people who are trained in dementia care, who are trained in dealing with their problem-behaviors and activities, assisting

>> FOR THE CAREGIVER >> FOR THE CARE RECEIVER >> FOR THE COMMUNITY

CONNECTED ASSOCIATIONS >> From clinic to home >> Individualised care within the community >> Dependency anxiety of elders >> Single window access to multi-disciplinary teams >> Breaking cultural hierarchy of care-giving >> Making dementia visible

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PHASE 4 COMMUNITY

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CULTURAL IMPLICATIONS - FINLAND VS. INDIA

Our study suggests that in Finland a lot of caregivers find it increasingly difficult to navigate the bureaucracy and seek appropriate help. About two-thirds of the eligible caregivers do not avail the facilities available to them. Minna, a 51 year old Finnish caregiver to her 84 year old mother wishes that: If municipalities would have money, they should find out the caregivers and send a patrol to their door to find out their needs, without them having to call to various numbers. When youve already called to five numbers without anyone even answering the phone or just giving you yet another contact information, you rather leave it So yeah, Id like to see a patrol just attacking to my door. (110704_TR_FIN_AK09_AK_V1_c1.pdf) It seems that if applied to the context of Finland community care intervention model can solve Minnas problem. Instead of her calling up different organizations, one community care-giver can become the single window access to available services and multi-disciplinary specialists, can come to her doorstep to assess the needs of both the care-giver and care-receiver and facilitate appropriate solutions to their issues. However, it needs more research to ascertain if the concept of community care will actually be able to solve the problems faced by caregivers like Minna in Finland or create more complexity for them and alienate the care-givers farther from the system.

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APPLICATION

VI DESIGN

PHASE 5

SELF-CARE
SELF: SELF-CARE AND SPACE
RATIONALE, OF WHY ORANGE CIRCLE RELEVANT DESCRIPTION OF PHASE The final phase is all about the caregiver obtaining the mental and/or physical space to focus on their self-care. In the stories above, we have heard about the importance of distraction both from personal and societal expectations, and from the actual caregiving activity as well. From our research we have found out that before reaching the SelfCare phase, caregivers usually evaluate and re-define their care-giving relationship and, either by the help of support networks or self-examination, manage reduce some of the care-giving burdens. During our research we have witnessed how in this phase caregivers use space as a coping mechanism and need their peers to reach their individual goals. SYNOPSIS OF STORIES Let us briefly introduce two stories: The Staircase and Exercise buddies. The Staircase story is about using physical barriers to create personal space. In Finland caregiver Minna (AK09), who is taking care of her mother, had build a staircase to her new home extension. She described that staircase had become her savior, since it allowed her to escape from the patient time to time. We will be zooming into the details of The Staircase story later. The story of Exercise buddies suggests, that caregivers need their peers not only in reflection and mental support but also as motivators in physical self-care. One of the local chapters of the national caregivers association at Tampere, Tampereen Seudun Omaishoitajat, has established a new project called PETRA, which aims to further caregivers physical health by coaching and peer supported exercising. The idea is to pair up caregivers to exercise together and also offer health education and professional help. The Staircase story is about the use of space as a coping mechanism. The idea of caregivers space evokes interesting questions and possible design opportunities: giver? tion? What kinds of design needs does co-residence create? Does the management and maintenance of space provide comfort to a careHow can we design separate physical or psychological spaces? What does the future caregiving space look like in India as a result of urbaniza-

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PHASE 5 SELF CARE

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(1) THE STAIRCASE HOW TO CREATE DISTANCE?

Minna is a 51-year-old caregiver taking care of her 84-year-old mother. Minna, her husband and her mother recently moved into their current house. It used to be an old summer cottage build by Minnas father, but they have fully renovated it. The household also includes two small dogs, which are very dear to Minna. When the decision of Minnas mother moving in to live with them was made, they decided to build an extension with two extra rooms and a storage room to make more space. Keeping in mind that the extension was planned and built after the caregiving decision was made, researcher was very surprised to see a staircase separating the old and the new part of the house. After all, Minnas mother mobility had suffered quite a lot due to the two strokes she has had. She can only walk short distances indoors using zimmer frame for longer distances she has to use wheelchair. After a while Minna revealed that staircase helps her to dissociate from the care-giving situation regularly and allow her to indulge in some hobbies: I just realised that I do have hobbies. So at 6pm every day I have to watch a tv-series about a German hotel. So thats a must. But unfortunately lately Ive noticed that Ive missed it quite a few times But when its on I try to fortify myself to my room. I have a good situation in terms that I get to be all on my own down there, so no-one can come here (interviewee gives me a meaningful nod towards the patient). Since they cant come here. So this is kind of my kingdom here. (110704TR_FIN_AK09_V1.C1.pdf, 12Mid, transcript) DESIGN SCENARIOS The Staircase story introduces us, how caregivers have developed individual coping strategies for not to lose the sense of self. In Minnas case (AK09) the solution was to become territorial: So here is the technical space, but I use it as my wardrobe. Its not a real wardrobe, but I wanted to have a space for just my clothes. So thats something new, like my this and my that. So there needs to be that own territory, so it shows up as my my wardrobe, my this.() All this my room and my tv thing probably derives from That kind of that identity of mine is disappearing, so that you have to be building something all the time, so your mind will stay I dont know, why is that. Im gonna find out that reason some day. (110704TR_FIN_AK09_V1.C1.pdf, 12Low, transcript)

In Finland, they also use physical distance as a tool on caregivers rehabilitation. The idea is to detach caregivers from their home environment and their patients to allow them the right mindset for reflecting and evaluating the situation (AK02, AK03). The Finnish caregivers rehabilitation concept evokes a question: What is the smallest (physical/virtual) change of scenery that can make a difference in caregivers recovery and coping? Physical barriers are also used in India, where Swapna (HPAD03) lives in same building, but in separate flats with her mother and Ravis (HPAD07) family had combined two apartments together: We have two apartments combined. One one side we have where my grandfather lives, his tv and everything and thats where he primarily stays and the second part, which is, theres a passage to go to the second apartment, where there is a study for my mom to take her calls. (110708_TR_IN_HPAD07_HP08_ HP09_HP_V1_C1.pdf, 28, transcript, 00:57:16) In Finland we have heard stories how, not only the company of peers, but for example the company of grandchildren (AKHP01) or a younger non-disabled child (Laura, AK10) provides energy and joy for caregivers. We have also heard, that though caregivers value even the inaccurate information provided by their peers (Merja, AK06), the value of a peer support is not always in information sharing. In fact, Laura (AK10) is a regular member of a peer support group, which is aimed for the mothers of disabled children. She revealed that during the peer group sessions they do not discuss about their children at all. These cases could also be seen as using mental distance for self-care.

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PHASE 5 SELF CARE

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CULTURAL IMPLICATIONS - FINLAND VS. INDIA Our study suggests theres an interesting difference between Finland and India in terms of caregiver self-care. In Finland, the initiatives aiming for caregiver wellbeing have a strong individual focus (such as caregivers rehabilitation camps and caregiver holidays). In India, while caregivers may have desires to nurture individual wellbeing, current system is more focused on how to help the care-givers cope with the daily activities of care-giving and how to adapt to the new relationship with care-receiver . As mentioned above, both in Finland and India physical barriers between caregiver and carereceiver are used to provide distance. The future of co-residence seems especially interesting in India, where the peoples habitats and residential areas are changing due urbanization. How can the reducing amount of physical space be replaced, and more importantly, what are the possibilities emerging from this rural to urban shift? And it is not only the caregivers who need privacy and space. Cultural changes in India suggest, that also elderly people, the future carereceivers, have started to value their own space and privacy and choose to live alone in familiar homes:
A lot of parents have learned to appreciate own space. I dont think earlier parents thought they would like to live alone, I think now they do. They like own space and own life, tend to live on own terms. I have an aunt who needs care but wont leave out of her own home; her children live abroad. She likes her life, Unless youre totally bedbound and helpless, you want to live own life and visit your children, that is a growing trend. (110712_TR_IN_HP05_HP_v1, 16Mid, transcript)

One thing is clear, as our participant Prof. Prafulla Chakraborti (AD08) pointed out: there is a little research done for elder care in rural India. Most elder care studies concentrate on urban India and pensioners. As India witnesses migration of more citizens from rural to urban context (not only geographically but culturally as well), a need to understand the rural experience and the subsequent transformations becomes more urgent to provide holistic support to caregivers from different strata of society.

HOW TO DESIGN FOR DISTANCE AT HOME AND ON THE MOVE? DISTANCING SCENARIOS:

Creating distance at home Creating distance from home Creating distance to go

ASSOCIATIONS:

tion

Urban apartments & increased interacSense of belonging through familiarity Touch gap Physical distance encourages sharing Support groups provide space
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NC CO VII.

NS SIO LU

1. Familiar novelty: Introduce new technology devices using familiar forms that provide a sense of continuity to former traditions and support quality of life activities with minimal disruption and maximum simplicity. 2. Its intimate, but its not personal. Make it less intimidating to let go...

...

CONCLUSION

VII

The purpose of anthropology is to make the world safe for human differences.
Ruth Benedict, anthropologist 18871948
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conclusions at a glance

DESIGN FOR THE PRESENT:

THEMES: 1. CAPACITY WITHIN REACH: Initiatives are focusing on how community CAN provide support, not on what they cant provide. MAKING THE BEST OF STAYING AT HOME AND FINDING A WAY OUTSIDE: Coping is about day-to-day SURVIVAL; care-givers adopt whatever works PRIVATE AND PUBLIC PERCEPTIONS OF CAREGIVING: Care-giving is not bound by one universal definition (even within a country); it is redefined personally and culturally. CHANGE AND FAMILIARITY: Familiarity IS crucial for effective care-giving.

TECHNOLOGICAL IMPLICATIONS: To provide the care-givers with an interactive context-aware device to provide with information as per the changing requirements of care-giving. To provide a secure network of support-advisers or listeners through touch, voice sensitive devices ( E.g. if a care-receiver falls and the caregiver is using both the hands to support he or she will not be able to activate/ operate the device with fingers). As mentioned by Dr. Indrani Chakravorty from India, domiciliary services like cooking, cleaning, home maintenance are becoming an increasingly important area to provide support to caregivers, especially elderly caregivers who live alone with the care-receivers. Technology can play a major role in augmenting these routine works and help care-givers identify trusted service providers. The key is to provide assistance in ways that the caregivers want without being obtrusive. Biosensors that provide continuous, real-time monitoring of vital signs and other physiological functions combined with motion detectors can be used to transmit digital reports to the caregivers and alert them about the need of the patients. Smart homes with a range of built-in sensors (e.g., temperature, pressure, fall detector) that monitor an individuals daily functioning and provide prompts for task completion as needed may be used as memory aids as well as safety measures, especially for patients with a tendency to wander off. Intelligent Assistive Technologies that sense and respond to user needs are adaptable to changing situations and compensate either for physical or cognitive deficits may be used for understanding the needs of the patients when they cannot express the same in words. Smart garments or textiles can be used as sensors to do real-time monitoring outside home to understand the condition and need of the patients. Technology based simple games may help to keep the care-receiver engaged and caregiver entertained. In her book, Alone Together Sherry Turkle describes how sociable robots inspired the elderly residents of institutions to talk and how technology has become the architect of . Intimacies. Similar robots may be used to inspire sharing by both patients and caregivers.

2.

3.

4.

conclusions at a glance

DESIGN FOR THE FUTURE:

THEMES:
1. 2. 3. 4. 5. Flexible safety and co-caring scenarios Innovative familiarity Distance and Distraction for Self-Care Navigating bureaucracy swamps Communities in transition. TECHNOLOGICAL IMPLICATIONS: Technology based reporting tool for neighbourhood co-carers. Especially in the case of dementia care, caregivers might benefit extra eyes in their neighbourhood whenever they have to leave home. Has the patient exit the building? Has the patient let someone in the apartment? Is there something extraordinary going on in the neighbourhood that might trouble the patient? Co-carer tracking tool. Especially in the case of gendered caregiving, people like Devi who couldnt help her grandfather in the bathroom, might find co-carer tracking tool comforting. It would help them to track trusted male/female co-carers from the neighbourhood to help them in a case of emergency. Memory journeys application. Application to initiate caregiver carereceiver communication on care-receiver childhood. Tool to create understanding, interaction and aid the caregiving as dementia progresses. Detaching reminder. An application that allows the caregiver to record and track his/her stress/frustration level and suggests a mental brake when the tension gets too high (activates a playlist, uploads a favourite tv-series, etc). Bureaucracy Butler. A personal, Wikipedia of how to navigate the local caregiving bureaucracies. First hand information from peers to peers. Overseas online peer support groups. As our study suggest, the younger generation of caregivers dont necessarily turn to their peers just in need of caregiving related information. They might in fact choose to talk about everything but caregiving with their equals, and are more likely to find information online. One of our interviewees in Finland suggested (Merja Purhonen, AK06) that the younger, migrated future caregivers might benefit from online peer support groups where they would be able to share thoughts in their first language.

conclusions at a glance

DESIGN PRINCIPLES FOR CARERS

1.

FAMILIAR NOVELTY: Introduce new technology devices using familiar forms that provide a sense of continuity to former traditions and support quality of life activities with minimal disruption and maximum simplicity. DISTRIBUTED CARE: Its intimate, but its not personal. Help caregivers understand who, what and how to ask for help to make it less intimidating to let go and reach out. HEALTHY DISTRACTION: Help caregivers understand its not always about what they need to do; balanced caregiving also includes understanding what doesnt need care. BELONGING MOMENT: Provide ways to capture and focus on the present moment POWERFUL SILENCE: Focus on technology that uses and enhances non-verbal communication. MANAGING WATERSHEDS: Provide a way to share hidden watershed moments externally IMAGINED SPACE: Provide a sense of distance, even if only mentally.

2. 3. 4. 5. 6. 7.

in depth conclusions follow...

VII CONCLUSIONS

THE PRESENT

BUILDING ON INTEL: DESIGN FOR THE PRESENT

During our research in how to understand informal caregivers in Finland and India, how caregiving is shared, and how caregivers cope, we learned that there is a time for caregivers to adapt to their caregiving role alone and there is a time in which caregivers work with others to explore shared coping strategies. In addition, we understood the careful balance caregivers navigate between exploring solutions for their needs as individuals and also to care for the care receiver needs. As most of our participants were caregivers for care-receivers over the age of 50, we found it relevant to revisit the main findings from Intels Global Aging Experience project (Intel (2007) Intels Global Aging Experience project, retrieved from http://www.intel.com/healthcare/). As we hope to build upon and contribute to the existing body of work within Intel, weve noted where our research applies and adds to the existing body of work and suggest (4) emergent themes in designing for caregiving in the present: 1. CAPACITY WITHIN REACH: Initiatives are focusing on how community CAN provide support, not on what they cant provide. 2. MAKING THE BEST OF STAYING AT HOME AND FINDING A WAY OUTSIDE: Coping is about day-to-day SURVIVAL; care-givers adopt whatever works 3. PRIVATE AND PUBLIC PERCEPTIONS OF CAREGIVING: Care-giving is not bound by one universal definition (even within a country); it is redefined personally and culturally. 4. CHANGE AND FAMILIARITY: Familiarity IS crucial for effective care-giving.

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PRESENT THEME CATEGORY 1: CAPACITY WITHIN REACH EXISTING THEME FROM INTEL GLOBAL AGING EXPERIENCE PROJECT: People want to focus on what they CAN do, not what they cant. Few people self-identify as either sick or old. Many people seek out challenges in order to keep themselves mentally sharp, and choose not to use canes or other assistive devices. Still, many people will need assistance. The key is to provide technology that people recognize as helping them to do what they want, rather than reminding them that they are no longer capable. (Intel, 2007) CARING FOR THE CARERS: We found that caregivers are both capable and like to perceive themselves as capable; it was difficult for caregivers to articulate where they needed help beyond some basic caregiving concerns such as proper nutrition and feeding techniques as well as the safety of their care receiver. On the other hand, within a caregiving relationship, it was difficult for both the care giver and care receiver to accept what was no longer possible for the care receiver, or for the relationship between the care receiver and the caregiver. The shift of identities and capabilities for the care receiver often posed a dilemma for the caregiver in how to properly provide care within the limitations of the care receiver while maintaining a sense of normality, dignity and possibility as much as possible for the care receiver.

EMERGING THEME FROM WHO CARES FOR THE CARERS 2011 STUDY: Initiatives are focusing on how community CAN provide support, not on what they cant provide. To close the treatment gap in India, Dr. Amit Dias has piloted a project to offer community carein which trained youth from the community provide support in assessment and care-giving of patients with dementia. During our interview, Dr. Dias acknowledged the scarcity of the available resources but he also highlighted how this project has been successful to change perceptions about dementia, care-giving and family responsibility. He highlights what community care CAN provide and where government needs to step in.

In Finland, although the Rehabilitation courses are strictly regulated by KELA, the organizations try to mould the counseling as much as possible to address personal needs of the participants. Our participants acknowledged that only a fraction of eligible caregivers avail the chance to participate but then they try to be as effective as possible. They work under financial constraints and impending risk of privatization but they go beyond their capacity to make the peer support available to the participants, often by sharing personal experiences.

is an intensely personal and individual relationship and activity; it was rare for caregivers to entrust activities such as feeding and providing medication to others. Providing support for timeconsuming but relatively impersonal activities such as groceries and maintenance seem to fall within the caregivers frame of reference of what is acceptable to receive help for, so that they may be able to spend their expertise and time on the more personal tasks for which they have more experience and insight. EXISTING THEME FROM INTEL GLOBAL AGING EXPERIENCE PROJECT: Healthy aging is inextricably linked to social participation. People of all ages aspire to have a sense of belonging, a legitimate role in the lives of their families and communities. Aging adults want to continue to feel useful, productive, and engaged with family and community, without feeling they are a burden. (Intel, 2007) CARING FOR THE CARERS: A focus on the caregiving role may reduce the caregivers participation in other external roles and activities, as was noted by many of our participants. At the same time, there is an understanding (and need) by the caregiver for the care receiver to be able to participate in society, safely. During our research, we discovered instances where peer and community models of support provided caregivers with both practical and psychological relief to be able to address and perceive their relationship with the care receiver in new ways,

PRESENT THEME CATEGORY 2: MAKING THE BEST OF STAYING AT HOME AND FINDING A WAY OUTSIDE EXISTING THEME FROM INTEL GLOBAL AGING EXPERIENCE PROJECT : Aging in place means more than staying at home. The ability to take care of ones own home maintenance or gardening, to buy groceries and prepare meals, to move about the neighborhood or townall of these factors can seriously impact an aging persons ability to live a desired life. Technology can play a major role here for instance, by helping communities to identify and enable trusted providers of home services, to enable mobility, and provide increased peace of mind, both within and outside the home. (Intel, 2007) CARING FOR THE CARERS: We found that the provision of support for the daily activities above was being explored by some of the caregiver support networks we interviewed. Caregiving

Similarly all the experts spoke about lack of support from government and highlighted how each of them is providing support to the caregiver either in personal or organizational capacity. For example, staff members of ARDSI Kolkata acknowledges that people living in the lower strata of the society cannot access their services but they also highlighted that they are the only one providing dedicated day-care solution to dementia patients in a city like Kolkata. Swapna searches online and offline to provide latest and relevant information on her website; rather than highlighting what is not there, she painstakingly documents all the available resources.

which resulted in a more positive caregiving environment. EMERGING THEME FROM WHO CARES FOR THE CARERS 2011 STUDY : Coping is about day-to-day SURVIVAL; care-givers adopt whatever works. Susan Folkman and Richard Lazarus has defined Coping in psychological terms as constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing. (E. M. Cummings et al, Life-span Developmental Psychology (1991) p. 92). Furthermore, the term coping generally refers to reactive coping, i.e., the coping response follows the stressor. Coping is thus expending conscious effort to solve personal and interpersonal problems, and seeking to master, minimize or tolerate stress or conflict. Coping responses are partly controlled by personality (habitual traits), but also partly by the social context, particularly the nature of the stressful environment.(Wikipedia, 2011). Our research showed that some caregivers find themselves virtually homebound and consumed by care-giving tasks. When care-giving is prolonged over months and years as in the cases of patients with dementia or permanent disability, the selfsacrifice particularly becomes harmful. Caregivers, both in Finland and India rarely think of their personal wellbeing. As Anne narrated a lot of caregivers join the Rehab course only when they are stretched to the limits like a rubber band. In a lot of cases care-giving becomes a point of day-today survival; a number of caregivers stop

seeing beyond their immediate responsibility and perhaps stop having dreams about the future altogether. In Finland the caregivers are suggested to see beyond the grind , prioritize and find joy in lifes simple moments. In India, most of the caregivers concentrate only in the job of care-giving and they learn to do it by trial and error and without any guidance, a lot of times the caregivers completely burn out. Added to this is the societal expectations and lack of awareness, the caregivers find no acknowledgement from the family or a space to share their burden. The care-givers cope by using available resources effectively in both the countries. In Finland , Minna uses a staircase, a cupboard and a particular soap as her coping tools; other caregivers share with close relatives living far away and still others write poems .

family caregivers cannot escape from the bulk of their other caregiving duties. Mrs. Maulik, shares the situation of an elderly caregiver, who could not get an eye operationas there was no one or insitition that could share her caregiving responsibility for the 10 days required for surgery and recuperation in Kolkata.

EMERGING THEME FROM WHO CARES FOR THE CARERS 2011 STUDY: Care-giving is not bound by one universal definition (even within a country); it is redefined personally and culturally. Caring is universally shared; people of all ages understand what it feels like to care for someone or to be cared for. As Malla, one of our participants from Finland told us succinctly and unambiguously, It is not so difficult to understand, to understand each other and this experience. We all take care of our loved ones. (110620_FN_FIN_HP02_ HP_v1_c1.PDF, 10B, FN,), AD. However, we saw many differences in how participants define care-giving. In a country like Finland, which has a long-standing history of supporting care-givers, Anne narrates that the nature & status of care-giving is too broad to define in Finland. She describes that, it doesnt have to be a relative... Either in their own home or then at the home of the one theyre taking care of... Someone who has the overall responsibility of the caring. Its a really broad term. Caregiver can be the one who visits daily to take care of some errands, so that the client copes in their home.(110620_TR_ FIN_AK02_AK_v1_c1.pdf, 5B, TR,).

PRESENT THEME CATEGORY 3: PRIVATE AND PUBLIC PERCEPTIONS OF CAREGIVING EXISTING THEME FROM INTEL GLOBAL AGING EXPERIENCE PROJECT: Health is not an objective quality; its defined collaboratively and culturally. Health is defined through interactions and negotiations among various people, including informal caregivers, family members, hired in-home and medical care givers, and the elderly themselvesall of whom may differ in their assessments of the elders health. Cultural, social and political systems also shape attitudes and behaviors related to health. (Intel, 2007) CARING FOR THE CARERS: This was strongly corroborated by our research. In India, caregivers felt assigned their roles through cultural or family hierarchies and were also unable to express their loved experience to others due to cultural stigmas and lack of awareness around caregiving. Within Finland, although caregiving is officially supported by the state and is enjoying a relatively positive brand, existing perceptions stigmatizing the use of social benefits acts as a barrier to caregivers in using such services, even if available.

In India, where peer support is rare, caregivers cope by exercising, listening to music, writing, blogging and games. Mrs. Nilanjana Maulik says that she insists that care-givers carry on with something which they enjoy, like cooking. Interestingly, most Indian caregivers are keener to know how to cope with the different activities related to care-giving than to focus on their own well-being. In India, due to relatively easy availability of household helps, house-maintenance and responsibilities like cooking and cleaning can be shared, yet, due to unavailability of respite care and trained personnel, most

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In our research, we found that notion of care-giving varied greatly even within Finland. A number of caregivers do not recognize their regular responsibilities as caregiving; Anne told us, Especially amongst the elderly, theres a lot of this kind of caring and nurturing and they dont talk about caregiving. So a lot of care-giving gets done without calling it care-giving. 110620_TR_FIN_AK02_AK_v1_c1.pdf, 6U, Tr). Unlike India, the reason is not only lack of awareness, stigma and acceptance but lack of clarity from the state about what care-giving entails and what support (financial or otherwise) they are eligible for. Finnish caregivers also find difficulty in navigating the bureaucracy. As per the Finnish law, the state is responsible for care-giving to individuals and caregivers at least legally have a choice, but they still provide informal care-giving to loved ones and culturally do not seek help before they reach a breaking point. In India, there is no legal definition or policy regarding care-giving, although historically academicians are working in the domain for a long time. The traditional norms and values of the Indian society laid stress on showing respect and providing care for the aged and ill. Traditionally the care-giving responsibilities are dictated by blood and gender hierarchy within the family and care-givers remain hidden or invisible. In our research, we found care-givers across generations and gender are redefining the care-giving role as per their own choices. Care-giving is defined through interactions and negotiations between filial responsi-

bility, cultural perceptions, financial factors and societal expectations. We have come across both bitterness about societal expectations and willingness from our participants to go beyond the dictates of the society and participate in care-giving. Devi, a 20 year old engineering student affectionately shares the responsibilities of looking after her grandfather along with her father and does not consider it as a responsibility but as a reflection of love for my granddad. On the other hand, Dr. Prasun Dey narrates that he provided care to his father for around 18 years out of societal duty not out of affection and caregiving is a very very stressful burden. Others, like Brigadier Bhattacharya redefined care-giving to his wife of 54 years as the mission of his life, while Professor Chakravorty shared how he is a tertiary caregiver to his sons girlfriends father and sings familiar songs to the care-receiver .

state of their own health through active daily monitoring, but to do so in a way that aligns with their preferred ways of living. (Intel, 2007) CARING FOR THE CARERS: Interestingly, our participants helped us understand that caregiving may have a low awareness level simply because it is both poorly defined and understood by society and caregivers themselves. We learned that acknowledgment and acceptance of the caregiving role , while crucial, is often gradual. Our participants told us, Most caregivers dont realize they are in a caregiving role. While some caregivers may experience a watershed event, such as a stroke, in the onset of the caregiving role, for others especially those dealing with dementia the understanding of the need for caregiving is often obscured as there is a gradual onset of the disease. While caregivers, in their long term outlook, may not always seem to mark the progression of heir experience trough watershed events often they are focused on he everyday cycle of coping our service design map does recognize that people often are in a state of healthy denial about aging and thus may not embrace such solutions and so presents the different stages of acceptance of the caregiving role and thereby acceptance of different forms of help. EMERGING THEME FROM WHO CARES FOR THE CARERS 2011 STUDY: Familiarity is crucial for effective caregiving.

We found that caregiving may be so lifetransformational that many caregivers mark progress less by watershed events than by the ability to maintain a semblance of stability and continuity. One of the most valuable opportunities for doing so was by maintaining the consistency and familiarity of the home environment. Our research shows that people want to live in their familiar surroundings. Even carereceivers do not accept change of place easily, even if it adds to their comfort. Ravis father did not like to go and stay at his daughter Hemas house, although she tried to provide all the amenities for his care. Ravi says he is only comfortable in his own house and in his own chair. As Devashri mentioned a lot of elderly people in India are choosing to stay in their familiar places rather than move in with their adult children as was the traditional norm earlier. James mother chose to stay at her own apartment instead of moving in with her sons and she was provided care with the help of two attendants and remote coordination among the brothers.

PRESENT THEME CATEGORY 4: CHANGE AND FAMILIARITY

Existing Theme from Intel Global Aging Experience Project: People mark the progression of aging by watershed events such as falls, change of residence, or loss of a loved one. Monitoring and early intervention are useful, but people often are in a state of healthy denial about aging and thus may not embrace such solutions. Our technologies must enable people to understand the

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The space, interior and dcor of the daycare centre of ARDSI, Kolkata evokes sense of familiarity through uses of regular furniture, decorative items photographs, books and toys. They create a comfortable home environment rather than creating a look of a medical facility, for example they use hand embroidered colourful cushions which create a cozy home environment. As they cater to mostly Bengali clients, they have a lot of books as found in any traditional Bengali household. In case of dementia, patients tend to regress back to their childhood memories. For care-receivers of dementia patients, familiarity with the past of the patient or childhood memories becomes crucial; otherwise they become unable to respond to the care-receiver in their memory Journeys. Brig. Bhattacharya argues that he could respond to the different stages of care-giving of his wife as he was aware of her childhood and adolescent memories and respond accordingly. Swapna could respond to her mothers memory journeys as she was aware of her past. She also acknowledges that familiarity in the day-to-day routine is essential for comfort of the patient with dementia; any change in that may cause discomfort to them. In Finland, during our research, we found out that patients with dementia undertake memory journeys especially when they were unable to travel anymore. They remember not only visuals but sensory details like smell, sound and tactile sensations from their childhood. When Minnas mother moved in to stay with her, Minna had decorated her home with her mothers items and her favourite paintings, to create a sense of familiarity.

DESIGN FOR THE PRESENT: TECHNOLOGICAL IMPLICATIONS

Technology is very fluid and its development is shaped by many external factors, especially in regards to assistive and multimedia technologies. The co-evolution of technology as per the demands of the care-giving situation needs to be structured by research frameworks that focus on cultural, political, economic social and psychological influences of that technology in addition to its use, infrastructures, standards, and development trends.

Smart homes with a range of built-in sensors (e.g., temperature, pressure, fall detector) that monitor an individuals daily functioning and provide prompts for task completion as needed may be used as memory aids as well as safety measures, especially for patients with a tendency to wander off. Intelligent Assistive Technologies that sense and respond to user needs are adaptable to changing situations and compensate either for physical or cognitive deficits may be used for understanding the needs of the patients when they cannot express the same in words. Smart garments or textiles can be used as sensors to do real-time monitoring outside home to understand the condition and need of the patients. Technology based simple games may help to keep the care-receiver engaged and caregiver entertained. In her book, Alone Together Sherry Turkle describes how sociable robots inspired the elderly residents of institutions to talk and how technology has become the architect of . Intimacies. Similar robots may be used to inspire sharing by both patients and caregivers.

Technology can be used: To provide the care-givers with an interactive context-aware device to provide with information as per the changing requirements of care-giving. To provide a secure network of support-advisers or listeners through touch, voice sensitive devices ( E.g. if a care-receiver falls and the caregiver is using both the hands to support he or she will not be able to activate/operate the device with fingers). As mentioned by Dr. Indrani Chakravorty from India, domiciliary services like cooking, cleaning, home maintenance are becoming an increasingly important area to provide support to caregivers, especially elderly caregivers who live alone with the care-receivers. Technology can play a major role in augmenting these routine works and help caregivers identify trusted service providers. The key is to provide assistance in ways that the caregivers want without being obtrusive. Biosensors that provide continuous, real-time monitoring of vital signs and other physiological functions combined with motion detectors can be used to transmit digital reports to the caregivers and alert them about the need of the patients.

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VII CONCLUSIONS

THE FUTURE

CONCLUSIONS: DESIGN FOR THE FUTURE

A major future umbrella trend, which stands out from our research, is urbanization and its various effects on caregiving in India. Wall Street Journal released recently a statement from Indias Census Commissioner, saying that for the first time India had added more people to cities than to its rural areas. According to 2011 census, 31.16 % of Indian population is urbanized, which is 3.35 % more than a decade ago. (Lahiri, 2011). In comparison, the urbanization rate was 85 % in Finland and in 80 % in UK in 2010 (CIA, 2011). India has also added almost 2,800 towns during the last decade (defined either as places that have a municipal administration of some sort, or as places that have a population of at least 5,000, where the main occupation for adult males is not farming, and where the minimum population density is 400 people per square kilometer) (Lahiri, 2011). In terms of caregiving, urbanization opens up interesting future design intervention spaces in terms of: 1. 2. 3. 4. 5. Flexible safety and co-caring scenarios Innovative familiarity Distance and Distraction for Self-Care Navigating bureaucracy swamps Communities in transition. Lets look at these five trends more closely...

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FUTURE THEME 1: FLEXIBLE SAFETY AND CO-CARING SCENARIOS

Urbanized apartment blocks create both possibilities and threats for caregiving and especially for caregiver coping. One of our interviewees described us the experience of living in a densely populated Indian neighbourhood in Calcutta: A lot of apartment blocks together, (laughs) so people living very closely together, and figuring out exactly whats happening. I think it also had a fair number of women who lived at home, and sort of, therefore, sort of, the community was very aware what neighbors were doing and so on there was a lot of interaction. Which meant that you had to be careful of neighborhood aunts, or if dating someone, seeing somebody, that all came into it. Lots of people keeping their watch over you not to make it sound frightening, but it was just a close community. (110712_TR_IN_HP05_ HP_V1_C1.pdf, 11, transcript, 00:16:17)

constant flow of well-meaning, but many times inappropriate advice from both kin and kith. She shares her frustration towards strangers and distant acquaintances advice and admonitions in one of her blogs When everyone is an expert. Swapna also shares a personal tool/coping strategy she has developed to evaluate the validity of the advices:

In some cases, the future urban caregivers might also need tools and strategies for evaluating and filtering the advice they receive due to the increased interaction. Swapna has created her 5-step model as a personal coping tool, but the need behind the tool will touch even more of her peers in the future.

patients tend to regress back to their childhood habits. For example in India, we heard about patients who, as their dementia progressed, couldnt use Western style toilets anymore, but preferred the Eastern/Indian ones, which they used as a child. In terms of design and development this means that future designers should understand the lived experience and reality of rural India. Familiarity is also used for care-receiver comfort in cases of co-residences. In Finland our participant Minna had decorated her home with her mothers items and her favourite paintings, to create a feeling of home and familiarity, even though their personal preferences differed a lot. We have also heard participants saying that they couldnt have taken care of their loved one without spending their whole life with them. The shift from rural to urban society creates barriers between generations children and grandchildren taking care of their elderly relatives might not know the circumstances they spent their childhood in. To further both caregiver and care-receiver well-being they might benefit from tools which help in creating understanding about the familiarity.

Here are the criteria I evolved to handle this unsolicited flow from people I had not asked for help, and who barely knew me: Are the advisers experts in the area they are advising on (medical professionals, experts in caregiving, in nutrition, exercise, rehabilitation)? If they are not experts, do they even know what my mother suffers from, or the full list of what I am doing and why? If they are not experts, do they have a stake in my mothers welfare, and would they be willing to help implement what they are suggesting? If they are not experts, and if I fall ill thanks to the workload they are proposing, will they take over caring for my mother in the meanwhile, or look after me when I fall ill? If they are not experts, have they experienced a parallel situation, and did they do themselves what they are proposing I should do, and did they remain sane while doing it? (100119_IN_HP03_Blog_EveryoneisExpert_ HP_V1_C1.pdf, 2Up, Blog)

>> TECH APPLICATION IDEAS Technology based reporting tool for neighbourhood co-carers. Especially in the case of dementia care, caregivers might benefit extra eyes in their neighbourhood whenever they have to leave home. Has the patient exit the building? Has the patient let someone in the apartment? Is there something extraordinary going on in the neighbourhood that might trouble the patient? Co-carer tracking tool. Especially in the case of gendered caregiving, people like Devi who couldnt help her grandfather in the bathroom, might find co-carer tracking tool comforting. It would help them to track trusted male/female co-carers from the neighbourhood to help them in a case of emergency.

According to our research, a majority of caregiver coping is related to the safety of the care-receiver and the fact that they are not able to share the caregiving burden with anyone. In future Indias urban habitat, could the increased neighbour interaction and neighbourhood aunts be used as a resource in co-caring? Or will there be a lack of privacy and sensitivity outside the individual family unit? Another interviewee, Swapna, describes how in India caregivers are also exposed to

>> TECH APPLICATION IDEAS

FUTURE THEME FAMILIARITY

2:

INNOVATIVE

Another emerging trend relating to urban caregiving in India, is the idea of familiarity when designing both items and spaces. Especially in the case of dementia care,

Memory journeys application. Application to p. 94 initiate caregiver care-receiver communication on care-receiver childhood. Tool to create understanding, interaction and aid the caregiving as dementia progresses.

FUTURE THEME 3: DISTANCE AND DISTRACTION FOR SELF-CARE

During our research, we heard both in Finland and India, how caregivers use physical space and barriers to create occasional distance to the care-receiver. Also the concept of Finnish caregiver rehabilitation is based on detaching the caregiver from his/her home environment, and creating distance to start reflecting and evaluating the situation. As cities become more densely populated and the personal space diminishes caregivers face the need of creating distance another than physical way. Can physical distance be replaced by mental distance? Can the Finnish rehabilitation concept be transformed as to-go version? Also, its not only caregivers who need the distance. Already some Indian care-receivers choose to live on their own instead of moving in to the caregivers house, due to familiarity and being used to having their own space. This indicates the growing need of distant care solutions in the future.

FUTURE THEME 4: NAVIGATING BUREAUCRACY SWAMPS

Navigating the exhausting bureaucracy swamp is already the reality of Finnish caregiving. India however is in a nascent stage in terms of caregiving, as one of our expert interviewees described, where the next necessary step would be governmental participation. Does India still have hope as one of our Finnish participant stated or does the governmental intervention in a country of 1.21 billion people automatically mean bureaucracy? What kind of support do the future Indian caregivers need when balancing between too much and too little information about governmental policies? For Finnish caregivers the current solution seems to be unofficial information many times provided by their peers. According to the Finnish support organisations caregivers value even the inaccurate information provided by their peers since, as one of our participants put it peer support is the only kind of information you fully understand. Caregivers also struggle with the formal language used by the governmental organizations. The already current bureaucracy issue opens a space for design interventions and, according to our research, that space is about to be even bigger in the future.

bureaucracies. First hand information from peers to peers.

have access to. Cultural transitions in both countries cast an interesting design challenge, if designing for global markets. When (if ever) will Indian market be receptive for more individualistic self-care approaches? How long will there be a need for design interventions relating to the burdens of cultural hierarchies? Should the design solutions in Western societies already be aimed for the needs of tech savvy generation?

FUTURE THEME 5: COMMUNITIES IN TRANSITION

The biggest difference between the two countries in terms of caregiver self-care is the individualistic vs. collectivistic approach. Currently Finland focuses more on enhancing caregivers self-knowledge and taking care of their individual needs; and in India the emphasis is on caregiver care receiver relationship. During our research we heard several indications about how the Indian culture is in transition and adapting Western, more individual influences. Cultural hierarchies, authorities and expectations still sit tight in India, but individuals are already challenging the cultural norms (e.g. son questioning fathers authority, paid staff eating with the family). In Finland on the other hand, we noticed generational differences in terms of interacting with peer support groups. Whereas elderly caregivers seemed to appreciate face-too-face peer interactions and were encouraged to share their caregiving experiences by their peers reactions and facial expressions, the younger caregivers might choose not to share their caregiving situations in peer interactions at all. For example a group of mothers with disabled children never spoke about their children in peer support meetings. For many younger caregivers, the primary source of caregiving related information was the Internet, which elderly caregivers dont many times

>> TECH APPLICATION IDEAS Overseas online peer support groups. As our study suggest, the younger generation of caregivers dont necessarily turn to their peers just in need of caregiving related information. They might in fact choose to talk about everything but caregiving with their equals, and are more likely to find information online. One of our interviewees in Finland suggested (Merja Purhonen, AK06) that the younger, migrated future caregivers might benefit from online peer support groups where they would be able to share thoughts in their first language.

>> TECH APPLICATION IDEAS Detaching reminder. An application that allows the caregiver to record and track his/her stress/frustration level and suggests a mental brake when the tension gets too high (activates a playlist, uploads a favourite tv-series, etc).

>> TECH APPLICATION IDEAS Bureaucracy Butler. The Wikipedia of how to navigate the local caregiving

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VII CONCLUSIONS

DESIGN PRINCIPLES

DESIGN PRINCIPLES FOR CAREGIVING

In the earlier chapters, we explored both process and analysis, as well as some concrete design scenarios for implementation. In this final chapter, wed like to further explore design implications for technology with a general view toward some emergent design principles from our research that can help drive the development of future design concepts to support caregivers in India, Finland and other countries. Bell, G. & Kaye, J. (2002) wrote, As researchers working at sites of technology production and innovationIntel Corporation and MITs Media Labwe find ourselves increasingly preoccupied with the question of how one designs, not for efficiency, but for experience, affect, and desire. The challenge is to make sense of peoples daily practices so that these practices can meaningfully inform design and innovation. (p. 3). This emphasis on value over efficiency, understanding the use of objects in context, and context as cultural and dynamic is meaningful and relevant to the realm of designing to support caregiving. Whereas many caregiving tasks are time-consuming, the prioritized outcome of design is not necessarily to make these tasks more efficient; rather it is to understand how and why caregivers may actually choose to perform these tasks and its meaning in the development of both their own identity as well as the renewal and sustenance of their relationship with the care receiver. Likewise, the use of objects in context is important especially for dementia caregivers, for whom even a minor change in routine, setting or object may substantially disrupt the care receivers environment. Finally, ultimately understand the dynamic cultural context can help understand where individual actions and reactions can be supported or hindered by outside influences. For example, even though Finland has an established system of socialized health care and support for caregivers, the bureaucracy can intimidate and dissuade caregivers from accessing the resources available to them, either because of perceived burden or actual burden, such as repeatedly being assessed when seeking support from different organizations for the same need. The understanding of how culture is shifting is also important in India. Whereas cultural and gender hierarchies continue to affect caregiving, it is important to understand how cultural norms are changing to allow for non-family members a greater share in caregiving, or how the lack of research regarding family caregiving may impact the understanding of what will occur as India projectedly moves from a largely rural to a largely urban population in 40 years. As mentioned earlier, technology is not imagined to be a magic bullet for the needs of caregivers. Instead, as Intels Health Technology Design Principles outline below, it is essential to create contextually-sensitive products that dont foster a dependence on technology, but rather augment and complement existing coping strategies. The following design principles complement Intels existing Health Technology Design Principles (Intel (2007) Health Technology Design and Innovation at Intel, retrieved from www.intel.com) [see sidebar].

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INTELS Health Technology Design Principles

INTEL (2007) HEALTH TECHNOLOGY DESIGN AND INNOVATION AT INTEL, RETRIEVED FROM WWW.INTEL.COM

DESIGN PRINCIPLES FOR CARERS

1. 2. 3. 4. 5. 6. 7. Familiar novelty Distributed care Healthy distraction Belonging moment Powerful silence Managing watersheds Imagined space

Intels health technology designers distill design principles from the findings of ethnographic research into how people interact with their existing technology devices and environment. These principles drive the development of design concepts. Following are general principles for health technologies that support independent living:
1. CREATE NON-INTRUSIVE TECHNOLOGY. Intels research found that technologies such as alarms and security cameras are quickly abandoned by users because they disrupt peoples normal routines and make them feel uncomfortable at home. 2. PROVIDE ENOUGH (BUT NOT TOO MUCH) SUPPORT. Help users to accomplish tasks without making them reliant on technology for things they could do themselves.. 3. BUILD ON EXISTING METAPHORS OF HOW THINGS WORK. People are more likely to use new technology if it comes in the form of a familiar device, such as a remote control. 4. KEEP IT SIMPLE. Use one-mode/one function devices when possible (e.g., a wall-mounted CD player that plays when a user pulls a string). 5. FOSTER TRUST. A device with a well known brand or with independent, third party certification will have a greater chance of being adopted. 6. ADAPT TO CHANGING NEEDS. As people age and change, so do their needs (in the case of Alzheimers disease, needs can change weekly or even daily). Technology should adjust in response. 7. DONT STIGMATIZE. Design devices that anyone, not just an older or disabled person, might use. (For instance, Intel designers are experimenting with a pill box and reminder system disguised as jewelry.) 8. 9. FACILITATE, DONT REPLACE, social connections with technology. FOCUS ON CONCEPTS THAT FOSTER CONNECTION, such as the presence lamp and the memory bracelet described in this article, rather than technology that replaces social interaction (e.g., virtual worlds).

1. FAMILIAR NOVELTY: Introduce new technology devices using familiar forms that provide a sense of continuity to former traditions and support quality of life activities with minimal disruption and maximum simplicity. Caregivers often need to carefully control the care enviornment for stability of care. Routines and structure matter. In many cases, less is more. For example, while many Alzheimers patients may lose the memory of how to read a clock or use the television, the ability to recall how to turn on a light switch may remain.

and despite desiring help, are often reluctant or unable to ask for support even from family members. During our study, we found that this was a barrier not only to receiving help but also to offering it. We also learned that caregivers can come from surprising places and that outside intervention, handled sensitively, provided enough distance for a change in shared caregiving to occur. Technologies that can help caregivers discover and accept this surprising, often hidden network of diverse peripheral carers is needed, as well as being able to help caregivers tease out the nuances of the types support activities others would be willing and successful at helping with to address caregivers concerns with sharing their duties.

3. HEALTHY DISTRACTION: Help caregivers understand its not always about what they need to do; balanced caregiving also includes understanding what doesnt need care. Caregiving often requires constant attention and repetitive tasks, that can be taxing if a caregiver is constantly worrying about too many small details without the adequate ability to take a step back. A device to help caregivers give care could be equally successful helping to distract them from their concerns (and stress) as much as addressing them. Whether it is a monitor that notes stress levels and suggests a distracting activity; a memory book that recalls positive memories versus future concerns; or simply music, distraction is not only a tool that caregivers can use with care receivers, but also to help provide self-care for themselves.

2. DISTRIBUTED CARE: Its intimate, but its not personal. Help caregivers understand who, what and how to ask for help to make it less intimidating to let go and reach out. Caregivers are extremely protective of their caregiving role

4. BELONGING MOMENT: Provide ways to capture and focus on the present moment. While caregiving is often a years-long, sometimes decades long, involvement that includes many ups and downs, respite and recovery doesnt need to take that long of a view. We found that small instances of distraction, enjoyment and reflection were useful as a personal recharge that could fit well within the daily temporal and mental capacity of caregivers. Likewise, we found that caregivers are conscious that care receivers also desire a need to be needed. We found the ability for caregivers and care receivers to find a space for social inclusion, even for a small moment, was a memorable and uplifting event that could have effects on selfesteem.

6. MANAGING WATERSHEDS: Provide a way to share hidden watershed moments externally. We found that caregiving may be so lifetransformational that many caregivers mark progress less by watershed events than by the ability to maintain a semblance of stability and continuity. One of the most valuable opportunities for doing so was by maintaining the consistency and familiarity of the home environment. Watershed moments may have a different proportion in caregiving. We understood that feedback regarding even these minute, mundane efforts could be powerful in providing a sense of progress and accomplishment for caregivers.

5. POWERFUL SILENCE: Focus on technology that uses and enhances nonverbal communication. Communication changes during a care relationship. We noticed silence, in different forms, becomes more present within the caregiving environment variably because the care receiver can not respond, the caregiver is unable or unwilling to share, the caregiving needs creates an inability to leave the home to engage in social activities, etc. Designing for silence or to reinforce and emphasize other non-verbal forms of communication (such as touch or play) can increase patience, connection, and understanding.

7. IMAGINED SPACE: Provide a sense of distance, even if only mentally. Physical distance and barriers were employed by caregivers in India and Finland for coping (stairs to limit care receiver access to parts of the house, separate apartments to provide a secure and quiet work environment). Equally needed was mental distance. Technology that can help provide caregivers mental distance from the immediate and constant demands of caregiving can also provide caregivers with the objectivity to better perceive new opportunities for both their care receiver and themselves.

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III. V

KS AN TH

Dr. David Prendergast and the members of TRIL team Dr. Catriona Macaulay Kate Saunderson Hothouse 2011 community, including our esteemed clients at Swisscom, Fjord, Brightsolid, Intel USA and Intel EIRE MSc Design Ethnography class of 2011

...

THANK YOU

For some of you, we understand it took more than half

a century to share your stories; thank you

for allowing us to listen.

Together

THANK YOU
All our participants, who shared their lives with us, and our own families.

Spa Hotel & Cottages Summassaari Kela The Social Insurance Institution of Finland Sound engineer Robin Sutherland

Dr. David Prendergast and the members of TRIL team Dr. Catriona Macaulay Hazel White Mike Press Tom Inns Fraser Bruce Dr. Annalu Waller Kate Saunderson Hothouse 2011 community, including our esteemed clients at Swisscom, Fjord, Brightsolid, Intel USA and Intel EIRE MSc Design Ethnography class of 2011 University of Dundee, Scotland

Staff -members and day-care patients of ARDSI Kolkata Staff -members and members of Elderly Day-Care Centre of CMIG Kolkata

MORE INFORMATION MSc Design Ethnography (http://www2.idl.dundee.ac.uk/desethno/) Intel Digital Health Group (www.intel.com/healthcare) Intel Health Research and Innovation (www.intel.com/healthcare/hri) Center for Aging Services Technologies (CAST) (www.agingtech.org) Technology Research for Independent Living (TRIL) Centre (www.trilcentre.org)

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Omaishoitajat ja Lheiset Liitto ry Tampereen Seudun Omaishoitajat ry Lomayhtym ry

CONTACT INFO

CONTACT/TEAM BIOS
DAVID PRENDERGAST, PHD, CLIENT INTEL HEALTH RESEARCH AND INNOVATION, IRELAND David is a Social Anthropologist in the Digital Health Group at Intel and a Principal Investigator of the Social Connection Strand of the Technology Research for Independent Living (TRIL) Centre. His research focuses on later-life course transitions, and he has authored a number of books and articles on aging and health. David utilises ethnographic research to co-design and iteratively develop culturally appropriate, independent-living technologies for older people. Email: david.k.prendergast@intel.com HAN PHAM, TEAM LEAD Einstein said, Information is not knowledge. I agree. Its about the knack of context: the right people at the right time getting it so a good idea becomes an actionable one. As an experience researcher, innovation strategist and speaker, I do my best work at crossroads: design, business, social change, culture. My work has been featured on the radio, in magazines, and in the AIGA Design Library in New York. I have been an advising curator for several California arts organizations and have served on the boards of Young Women Social Entrepreneurs and Nest-SF, two organizations connecting sociallyconscious inspiration to business. Email: han@designswinger.com Twitter: http://twitter.com/designswinger ANAMIKA DEBNATH, FIELD LEAD - INDIA Anamika believes that Fashion is a mirror of the time we live in and we are constantly redefining our identities through our choice of garments and accessories. Todays globalized world provides more technology-based options than ever before to anyone and everyone to tell their stories through clothes, the second skin. Anamika is currently an Associate Professor in Fashion Design at National Institute of Fashion Technology (NIFT), India. She has worked with several business organizations as a design professional prior to becoming a full time academician and coordinated many social developmental projects on behalf of Government of India. Email: anadebnath@yahoo.co.in ANNA KULONEN, FIELD LEAD - FINLAND Annas recipe? Dreaming, being passionate and having fun. Currently Anna is an owner and service designer of the company Kolmas Persoona, which specializes in service development and service design. Shes also an owner and board member of the company Sivupersoona one of Finlands biggest providers of sign language p. 103 interpreting services. Anna is constantly searching for new experiences, expanding her knowledge and trying to create change. Email: anna@persoona.fi Linkedin: http://fi.linkedin.com/pub/anna-kulonen/5/98a/144


AP IX.

How are carers are already doing this in India and Finland, formally and informally, in person and through technology?

IX ND PE

01d. How can digital technology specialists, like Intel, be responsive to these emergent patterns ...

...

IX APPENDIX

WHAT IF you wanted more?

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what did you read?

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Gaffney, G. (January 30 2007) An Interview with Genevieve Bell. The User Experience Podcast, Information & Design, 22. Gobe, M. (2002). Citizen brand. New York, NY: Allsworth Press. Godin, S. (2000). Tribes: We need you to lead us. London, Great Britain: Sage Publications Goffman, E. (1959). The presentation of self in everyday life. London: Penguin. Intel (2007). Intels Approach to Innovation and Healthcare, retrieved from intel.com Intel Health (2008) Technology for an Aging Population: Intels Global Research Initiative. Retrieved from www.intel.com/healthcare/research Kaivolainen M., Kotiranta T., Mkinen E., Purhonen M. & Salanko-Vuorela M. (2011). Omaishoito: Tietoa ja tukea yhteistyhn. Helsinki: Kustannus Oy Duodecim. Kanel K. (2011). A Guide to Crisis Intervention. Belmont, CA: Brooks/Cole. Lahiri T. (2011, July 18). Indias Pace of Urbanization Speeds Up. The Wall Street Journal. Retrieved from http://blogs.wsj.com/ indiarealtime/2011/07/18/indias-pace-ofurbanization-speeds-up/ on August 16, 2011. Leinbach, C. (2002). Managing for breakthroughs. In Squires, S. and Byrne, B. (eds.). Creating breakthrough ideas: The collaboration of anthropologists and designers in the product development industry. Westport, CT: Greenwood. Lentz, C. (1995).Ethnic conflict and changing dress codes: a case study of an In-

dian migrant village in highland Ecuador . (Brown, A. Trans.) In Eicher, J. B. (Ed.), Dress and Ethnicity (pp.269 293).Oxford, UK: Berg Mau, B. (ed). (2004). Massive change. London: Phaidon. Merholz, P., Schauer, B., Verba, D., and Wilkens, T. (2008). Subject to change: Creating great products and services for an uncertain world. (2nd ed.) Sebastapol, CA: OReilly. Morris, D. (2005). The naked woman: A study of the female body. London, Great Britain: Vintage. Omaishoitajat ja Lheiset Liitto ry (2010). 2010-2011 Palveluopas omaishoitajille, vammaisille, pitkaikaissairaille ja ikntyville. Helsinki: Omaishoitajat ja Lheiset Liitto Ry. Paulicelli, E. (2009).Framing the self, staging identity: Clothing and Italian Style in the films of Michelangelo Antonioni (1950 1964). In Eicher, J. B. & Clark, H. (Eds.), The fabric of cultures: fashion, identity and globalization (pp.53 72).New York, NY: Routledge Pham, H. (2010) A problem of symmetry: The influence of ethnography toward a more inclusive model of design Plowman, T., Prendergast, D., & Roberts, S. (2009). From People to Prototypes and Products: Ethnographic Liquidity and the Intel Global Aging Experience Study. Intel Technology Journal, 13 (3), 20-38. Putnam, R. D. (2000) Bowling Alone. The collapse and revival of American community, New York: Simon and Schuster.

Squires, S. and Byrne, B. (eds.). (2002). Creating breakthrough ideas: The collaboration of anthropologists and designers in the product development industry. Westport, CT: Greenwood. Statistics Finland: Population Structure 2009 (2009). Retrieved from http:// www.stat.fi/til/vaerak/2009/01/vaerak_2009_01_2010-09-30_kuv_002_en.html on August 6 2011. Tilley, C. (2001). Ethnography and material culture. In Atkinson, P. (Ed), Handbook of ethnography. (pp. 258-269). London : Sage. United nations, Population Division of the Department of Economic and Social Affairs of the United Nations Secretariat: World Population Prospects: The 2010 Revision. Retrieved from http://esa.un.org/unpd/ wpp/index.htm on August 6 2011. Visit Finland The Official Travel and Tourism portal (2011). Retrieved from (http:// www.visitfinland.com/en_GB/web/guest/ finland-guide/about-finland/facts) on August 6 2011. Wikipedia: Finland (2011). Retrieved from (http://en.wikipedia.org/wiki/Finland) on August 6 2011.

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what did you ask?

OFFICIAL Question Guide

QUESTION GUIDE
00. TEAM EIRE FOCUS:

mally, in person and through technology? What are culturally appropriate forms of coping? 01d. How can digital technology specialists, like Intel, be responsive to these emergent patterns of elder health, social care and rapidly changing social scenarios.

to individual carers view and/or address all of the above?

04b. Explain the interview and study purpose again

a. Project Goal: Ultimately, our goal

Our study examines the experiences of informal (family) caregivers using a comparative approach between India and Finland. In doing so, we would like to understand what forms of support networks and communities, whether formal or informal, are emerging and evolving to provide support and nurture well-being among the caregivers and how these coping strategies may be supported, improved or augmented, individually or through the community, through the culturally appropriate use of digital technology. Our research outcomes will be framed within a business design, service design or trend forecasting context. * In the questions below, carer or caregiver will refer to family or informal caregivers.

03. CONTEXTUAL QUESTIONS GENERAL:

is to understand caregivers and how we can improve or augment coping strategies, whether through technology or otherwise,

03a. Why do people seek/offer/accept (peer) support? 03b. Who can offer (peer) support? Who and what is trusted, and why?

that is culturally appropriate. In understanding how and why possible strategies could work or not work in different countries; sometimes its important to understand what you shouldnt do as well.

02. KEY QUESTIONS RESEARCH FOCUS:

03c.

02a. What is the nature/ontological status of family/informal caregiving within Finland and India? 02b. What is the lived experience of being a caregiver in two very different cultures (population, geography, economy, government policy, healthcare systems, etc). 02c. Who cares for the carers within these cultures? 02d. Who is the primary caregiver? Is s/ he hidden/visible? Why and how?

03d. What forms does (peer) support take and why? 03e. Whats the peer-to-peer transaction what gets exchanged? 03f. Whats the role of peer support in caregivers well-being? 03g. What are the misperceptions, stigmas, and stereotypes posing barriers of accepting/giving support? 03h. Why and how people feel comfortable sharing private & sensitive information with others? What is the role of reputation, risk and trust in peer relationship? 03i. How and why does technology aid or hinder these relationships?

b. The context of caregiving is very important the value of their individual story to help understand the bigger picture c. No right answers: Often, exploratory research can be just to understand what questions to ask. 04c. Reassure them they can refuse to answer questions and/or stop interview at any time 04d. Explain what they will get after (interview transcript for clarification and/or study outcomes summary?) 04e. Reconfirm permission to record; Ensure you have a signed consent form 04f. Reconfirm permission for any multimedia and what type

01. KEY QUESTIONS OUTCOME:

02e. Who else shares the experience of caregiving? Why? How is caregiving shared, if shared? 02f. What coping strategies (individual, psychological, emotional, family-, community-based) are available? Missing? Emerging? 02g. Whats good and bad about current lived experience of carers? 02h. What do carers want to change about their current lived experience? 02i. How do organizations as opposed

01a. Who cares for the carers What is the context of the caregivers needs for support? 01b. How we can leverage peer support and innovative forms of community care to provide extra support for people who are sick or isolated? 01c. How are carers are already doing this in India and Finland, formally and infor-

04. PARTICIPANT QUESTIONS PROTOCOL BASICS:

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Introductions - A brief, but necessary start to every interview

04a. Introduce yourself and anyone else on the call

04g. Before interview starts do a final check recording equipment is working 04h. Take notes

(or what) helps care for the carer? How do these relationships aid and affect each other? a. Note to researcher: This can be other family members, other individuals, community members or organizations or even the individual. mitigate - the family or communities of individuals? (india - individual, writing, psychological) b. Note to researcher: Psychosocial factor is very important. Very rarely do caregivers act purely as individuals. Need to understand how coping strategies impact each other. 05i. (Why?) How is caregiving shared?

05k. How do you maintain quality of life? For the patient? Others? For yourself? a. life? Who helps you maintain quality of

05t. Online: Is there an online community for caregivers? a. To what degree do the available resources meet their needs? b. How valid are the resources? Why/ How is it (or is it not)culturally appropriate? 05u. Sharing: What is not shared? What is suppressed? What is suppressed that needs to be shared? What forms does it take?

04i. Say thank you and ask for permission to contact of need any follow up 04j. Feedback Interviewee reflections on interview (Did they learn something during the interview? Whats on their mind now?)

b. What is quality of life? Are there different levels? c. Why is it important?

FAMILY

05. PARTICIPANT QUESTIONS GENERAL BASICS (ESPECIALLY CAREGIVERS): Background:

05l.

Tell me about how you see family? EX-CAREGIVERS

05m. What is your familys relationship or role in caregiving? 05n. How is life different?

05a. To better understand you, its useful to start with your background. Can you tell me a little bit about yourself? 05b. Can you describe your family?

a. What are the burdens and how they are perceived? b. Can you tell me of a day in your life as a caregiver? c. What is a good day for you?

05o. What adjustments did you have to make? 05p. Who has the biggest impact (or has been impacted)?

05v. What is it like for you now after the passing of the person for whom you gave care? How is it for your family? 05w. How is life different?

05c. (If referred) How are you connected to _________ ? 05d. you? What does caregiving mean to

d. Can you tell me about an experience or time when it was especially difficult? e. Can you share an experience where you didnt know what to do? f. Can you share an experience where you needed to ask for help (and did)? Didnt? Why? What happened? g. Who did you ask for help? Who next? Who cant you ask for help, but want to? 05j. (What/how). What are your coping strategies?

05x. What adjustments did you have to make? 05y. Do you still identify with being a caregiver? 05z. Do you still take part in the caregiving community?

COMMUNITY 05q. Is there a caregiving community? Who is involved? Where does it exist (or doesnt)? Why or why not? 05r. Do they consider themselves a part of this community? Why or why not? How are they involved? a. What has been its impact? How has their life changed? 05s. Online: Have they/do they use online resources fir caregiving? What? How? Why? a. Do they combine online and offline resources?

05e. Caregiving experience where did it start? 05f. When did you begin thinking of yourself as a caregiver? How? Why? Why not?

CAREGIVER & CAREGIVER WELLBEING

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05g. (Who is the caregiver) Is there a primary caregiver? 05h. Who else is a caregiver? E.g., Who

06. PARTICIPANT QUESTIONS ORGANIZATIONAL

give peer support? 06n. How do peer support groups usually evolve? Why? 06o. Is peer support an intentional part of your programs? If so, how do you further it? 06p. Group meetings: What kinds of topics caregivers typically discuss during the group meetings? What kinds of things do they need to share with peers? 06q. Group meetings: Do people know each other beforehand? Do peer support networks establish themselves during the course/program/event? Do they keep on existing after the course/program/event? 06r. Gives us a view of an organizational advocate (medical professional/expert/ etc) for caregivers: what are the everyday challenges of caregivers which endanger their well-being and the continuum of caregiving 06s. What are the best practices of furthering caregivers well-being?

INDIA SPECIFIC:

INDIVIDUALS WITHIN ORGANIZATIONS 06a. tion? Whats your role in this organiza-

08a. How did you learn how to be a caregiver? 08b. How does your culture impact caregiving? 08c. Does culture offer any challenges to being a caregiving? 08d. How does culture aid caregiving?

06b. Can you share how you came to work for this organization? 06c. Dou you have any personal experience about caregiving? Could you tell me about that? 06d. ing? How would you define caregiv-

08e. Note to researcher: Examine dynamics of shared caregiving within the family (and other support)

06e. How would you define the concept of what you/your organization does? 06f. What are the triggers, which make caregivers come to you/your organization? What are the typical stories behind participation? 06g. Tell me about the structure and content of your programs/work? Why is it like that? 06h. What kind of issues are you trying to address/solve? 06i. What kind of methods do you use?

SPACE (FIELD OBSERVATIONS) 09a. How can we better understand space, movement, impermanence, permanence (if you were an architect, designer, dancer, what would you be drawn toward observing and understanding)? a. e.g 1. Medicine is usually kept hidden. For caregivers, they may be in view to keep them top of mind. (social mores) b. e.g 2. ARDSI daycare center is suitable for dementia patients who are likely to wander, to fall c. e.g 3., Certain daycare centers require some minimum level of activity from patient. If the patient degenerates into lack of movement, then the patient has no option other than home care. 09b. Perceptions of place and space: What is taken for granted as a non-caregiver? What is taken for granted as a caregiver?

FINLAND SPECIFIC:

06j. What are the individual objectives like (goals for the participants)? 06k. What kind of feedback do you get from the participants? 06l. According to your experiences, whats the role of peer support in caregivers rehabilitation/well-being? 06m. From your organizational (medical/professional) perspective, who can

07a. What kinds of initiatives Finnish government supports? 07b. How do they support them? How has this changed? 07c. Why does Finnish government support these types of initiatives? 07d. What are the results like? What are we missing?

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who did you talk to?

participant list

COUNTRY FOCUS : FINLAND

01. PARTICIPANT NAME: ANNE PARTICIPANT LOCATION: Central Finland PARTICIPANT ID NAME: AK02 Anne (Anonymized) RESEARCH RELEVANCE: Anne works as a course instructor for last 4 years on caregivers rehabilitation courses. Shes a registered nurse and occupational health care professional and has working experience from both public and private sector. She started her career in 1988 as a nurse. Anne also has personal caregiving experience as her mothers informal caregiver. Her job description includes the selection of participants and running the rehabilitation courses with a multi disciplinary team of other health care professionals doctor, psychologist, social worker, physiotherapist and dietician. INTERACTION TYPE: In-person interview at the her surgery/ office in the holiday resort 03. PARTICIPANT NAME: LAKE GROUP PARTICIPANT LOCATION: Saarijarvi, Finland PARTICIPANT ID NAME: AKHP01 Lake Group (Anonymized) RESEARCH RELEVANCE: Caregiver remedial courses are creative support initiatives, which aim to further caregivers health and wellbeing. The participants of this remedial course are working as family caretakers on daily basis. The course is aimed especially for the caretakers who have diseases and/or symptoms of a possible burnout, which may jeopardize continuing caretaking. This course was a 9-day off site retreat course that will continue with individual support and training after the program. Lake Group participants are all spousal caregivers over the age of 50. In this group were 2 males and 3 females led by a female instructor (also a trained nurse). This course was offered by one of the largest organizations for caregiving training in Finland; the group is an independent organization that receives funding through the Finnish government. INTERACTION TYPE: Group observation 05. PARTICIPANT NAME: SIRPA M. PARTICIPANT LOCATION: Finland PARTICIPANT ID NAME: AK04 Sirpa Mtt RESEARCH RELEVANCE: Sirpa was the instructor of a peer support group conversation we had a chance to observe on June 20th 2011. She has been in her current position as a regional manager for Omaishoitajat ja Lheiset Liitto (Caregivers and Close Ones Association) little over a year. Her main responsibilities are organising and supporting the operations of the 16 local associations and taking part to the rehabilitation courses organised at her district. Sirpa is a registered nurse and has also studied social and health administration. She doesnt have any personal experience from informal caregiving, but had her first encounters with caregivers when operating as project lead in project concentrating on developing palliative care. INTERACTION TYPE: Follow up interview via phone.

02. PARTICIPANT NAME: MALLA PARTICIPANT LOCATION: Helsinki, Finland PARTICIPANT ID NAME: HP02 Malla Heino RESEARCH RELEVANCE: Malla is one of the program managers with 7 years experience of the main support network and advocate for Finnish caretakers and their patients Omaishoitajat ja Lheiset Liitto (Caregivers and Close Ones Association). She focuses on international programs and is currently develop the online coaching course. INTERACTION TYPE: In-person interview at Omaishoitajat Headquarters.

04. PARTICIPANT NAME: ILKKA PARTICIPANT LOCATION: Saarijarvi, Finland PARTICIPANT ID NAME: AK03 Ilkka Raatikainen RESEARCH RELEVANCE: Ilkka is the manager of caregivers rehabilitation programme. Ilkka was also a member of the project group when the concept of caregiver rehabilitation camps was developed at the end of the 1990s. INTERACTION TYPE: In-person interview at Spa Hotel Summassaari.

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06. PARTICIPANT NAME: SIRPA O. PARTICIPANT LOCATION: Helsinki, Finland. PARTICIPANT ID NAME: AK05 Sirpa Otava RESEARCH RELEVANCE: Sirpa is the customer service manager of the association organising supported holidays for caregivers. Shes also in charge of service development and client/partner cooperation. She offered an insight to understand the nature & dynamics of a Finnish support Initiative. INTERACTION TYPE: Follow up interview via phone.

09. PARTICIPANT NAME: LOCAL ASSOCIATION PARTICIPANT LOCATION: Tampere, Finland PARTICIPANT ID NAME: AK08 Local Association RESEARCH RELEVANCE: Informal discussion with two workers and one board member of the TampereenSeudun Omaishoitajat Ry, which is a local branch of the Omaishoitajat ja Lheiset Liitto. Participants are: 1. Orvokki Haavisto- One out of two workers at the local branch of the Omaishoitajat ja Lheiset Liitto: Tampereen Seudun Omaishoitajat Ry. Former caregiver of her mother diagnosed with Alzheimers. Mother passed away in 2006. 2. Kati Haavisto - One out of two workers at the local branch of the Omaishoitajat ja Lheiset Liitto : Tampereen Seudun Omaishoitajat Ry. Project leader in a local project, which focused on developing and coordinationg caregivers peer support groups. 3. Jaana Vliaho - One of the founders, member of the board and volunteer of Tampereen Seudun Omaishoitajat Ry. Former caregiver INTERACTION TYPE: Informal group discussion.

11. PARTICIPANT NAME: LAURA PARTICIPANT LOCATION: Tampere region, Southern Finland PARTICIPANT ID NAME: AK10 Laura RESEARCH RELEVANCE: Participant is 38 years old full time mom, whos the informal caregiver of her 7-year-old disabled daughter. Laura is on a disability pension because of a long-term condition. Her family includes a husband and another daughter aged 6. Laura used to be the official caregiver of her child, but due to her health condition the official caregiver status is now on the husband. INTERACTION TYPE: Home observation and interview.

07. PARTICIPANT NAME: MERJA PARTICIPANT LOCATION: Helsinki, Finland. PARTICIPANT ID NAME: AK06 Merja Purhonen RESEARCH RELEVANCE: Interviewee is the organizational manager and in charge of regional cooperation and the development of Omaishoitajat ja Lheiset Liitto (Caregivers and Close Ones Association)and a former caregiver to her disabled son. INTERACTION TYPE: In-person interview at Omaishoitajat ja Lheiset Liittos office.

12. PARTICIPANT NAME: SATU PARTICIPANT LOCATION: Central Finland PARTICIPANT ID NAME: AK11 Satu RESEARCH RELEVANCE: Satu is a 56 years old informal caregiver of her husband. Shes currently off-duty from her work as a social worker and project manager, to take care and help her husband rehabilitate from a severe stroke. The interviewee was one of the participants of the caregivers rehabilitation course, which we had a chance to observe. INTERACTION TYPE: Follow up interview via phone.

08. PARTICIPANT NAME: CG LEISURE GROUP PARTICIPANT LOCATION: Tampere, Finland PARTICIPANT ID NAME: AK07 CG Leisure Group RESEARCH RELEVANCE: CG Leisure Group is a summer leisure day organized to caregivers by the church and the national caregivers association, Omaishoitajat ja Lheiset -Liitto. INTERACTION TYPE: Group observation in a camp resort.

10. PARTICIPANT NAME: MINNA PARTICIPANT LOCATION: Southern Finland PARTICIPANT ID NAME: AK09 Minna RESEARCH RELEVANCE: Participant is a 51-year-old woman taking care of her 84-year-old mother. Minnas mother has been living with Minna and her husband since April, but shes been taking care of her errands longer than that about 6 years. Minna has been on a disability pension 2.5 years after working as an entrepreneur and hairdresser for 34 years. INTERACTION TYPE: Home observation and interview

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COUNTRY FOCUS : INDIA

13. PARTICIPANT NAME: DR. INDRANI CHAKRAVARTY PARTICIPANT LOCATION: Kolkata, India PARTICIPANT ID NAME: AD01 Dr. Indrani Chakravarty RESEARCH RELEVANCE: Dr. Indrani Chakravarty has been working in the domain of Elderly & Care-giving for more than two decades. She has also been part of the team advising the government on policy issues. She is the Chief Functionary/Secretary Designed as Director of Calcutta Metropolitan Institute of Gerontology (CMIG), a voluntary organization ( founded in 1988) dedicated to taking care of elderly people. CMIG promotes research in field of Gerontology, imparts various types of training to the care givers as well as senior citizens and renders services to the downtrodden elderly. CMIG undertakes training programs as collaborating Agency of National Institute of Social Defence(NISD), Ministry of Social Justice & Empowerment, Government of India. They also conduct training programmes in the area of Management of Dementia. INTERACTION TYPE: In-person interview at CMIG Day Care centre.

formulating care plan for a long-term basis. She is the author of the first Bengali Book on Dementia Caregiving. INTERACTION TYPE: In-person interview at her residence.

17. PARTICIPANT NAME: DR. PRASUN DEY PARTICIPANT LOCATION: Kolkata, India PARTICIPANT ID NAME: AD07 Dr. Prasun Dey (Anonymized) RESEARCH RELEVANCE: Dr. Prasun Dey is a Cultural Anthropologist and has done extensive research on Indian elderlies. He is a former caregiver to his father for 18 years. INTERACTION TYPE: In-person interview

15. PARTICIPANT NAME: BRIG. S. P. BHATTACHARYA PARTICIPANT LOCATION: Kolkata, India PARTICIPANT ID NAME: AD03 Brig. S. P. Bhattacharya, VSM RESEARCH RELEVANCE: Brig. S. P. Bhattacharya is 86 years old and is the primary Caregiver to his wife (who is a patient of Alzheimers) for the last sixteen years. He has written a book titled In the line of Alzheimers:The mission continues. He has chronicled his journey as a caregiver in this book, with the hope that it will support the future caregivers. This book highlights the importance of understanding the cultural context for effective management of Dementia. INTERACTION TYPE: In-person interview at his residence.

18. PARTICIPANT NAME: PROF. PRAFULLA CHAKRABORTI PARTICIPANT LOCATION: Kolkata, India PARTICIPANT ID NAME: AD08 Prof. Prafulla Chakraborti RESEARCH RELEVANCE: Prof. Prafulla Chakraborti is a researcher/Academician/ Trainer in the Caregiving domain. He has also authored the first ever paper on dementia in India in 1991. He is also a tertiary care-giver to a Dementia patient.

16. PARTICIPANT NAME: MS. NIBEDITA RAY PARTICIPANT LOCATION: Kolkata, India PARTICIPANT ID NAME: AD04 Ms. Nibedita Ray RESEARCH RELEVANCE: Ms. Nibedita Ray is the project coordinator of the Dementia-daycare centre at Ankur, ARDSI , Kolkata and a community caregiver for last couple of years. INTERACTION TYPE: In-person interview at ARDSI Day care centre for Dementia patients.

INTERACTION TYPE: In-person interview

14. PARTICIPANT NAME: MRS. NILANJANA MAULIK PARTICIPANT LOCATION: Kolkata, India PARTICIPANT ID NAME: AD02 Mrs. Nilanjana Maulik RESEARCH RELEVANCE: Mrs. Nilanjana Maulik is the Director of Dementia Services and Joint Secretary General of Alzheimers And Related Disorders Society of India( ARDSI). She is a support Worker and Counseller for Dementia Caregivers for more than a decade. She offers counseling and advise to caregivers and family members regarding appropriate care management for patients with Dementia,

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19. PARTICIPANT NAME: DR. AMIT DIAS PARTICIPANT LOCATION: Goa, India PARTICIPANT ID NAME: AD11 Dr. Amit Dias RESEARCH RELEVANCE: Dr. Amit Dias is the founder secretary of the Dementia Society of Goa and the coordinator of the 10/66 Dementia research group in India. Dr. Amit Dias is an epidemiologist and geriatrician by training and is currently the Asst. Professor at the department of Preventive and Social Medicine at Goa Medical College. He is also the coordinator of the Medical and Scientific Advisory Panel for the Alzheimers and Related Disorders Society of India (ARDSI). He was one of the authors of the National dementia report that was presented to the Government of India in 2010. He has a number of publications to his credit in national and international peer reviewed journals. His research on interventions for families of people with dementia won the International FMA-ADI prize for being the best evidence based psychosocial research in 2010. INTERACTION TYPE: Interview via skype

materials. INTERACTION TYPE: Interview via skype

most comprehensive Indian-specific dementia website; current caregiver and caregiver trainer. She has been caring for her mother for last 11 years.

21. PARTICIPANT NAME: JAMES SINGH PARTICIPANT LOCATION: Bangalore, India PARTICIPANT ID NAME: HP06 mized) James Singh (Anony-

RESEARCH RELEVANCE: Mr. James Singh is an ex-Caregiver who is connected to Swapna Kishores support network. He and his three brothers offered his mother, who suffered from Alzheimers, remote care with the help of two paid caregivers , off and on for ten years, till she passed away. INTERACTION TYPE: Interview via skype

Her site, Dementia Care Notes, contains exhuaustive and current information on dementia and caregiving in India, lots of material for caregivers, as well as links for resources. She has also included (and keep adding to) interviews of dementia caregivers and experts from India, to give a wider perspective of dementia caregiving in India. INTERACTION TYPE: Interview at her residence.

24. PARTICIPANT NAME: SHIKHA ALEYA PARTICIPANT LOCATION: Mumbai, India PARTICIPANT ID NAME: HPAD04 Shikha Aleya RESEARCH RELEVANCE: Shikha Aleya is one of four cofounders of Caregivers Link, a new online/offline resource for caregivers in India. She is a writer, researcher and communication professional with two decades of work experience in the corporate and the development sector and also the television & entertainment industry. Shikha feels strongly about equality, independence, inclusion and a fair world. She is a consultant with organizations in the NGO sector and is designing projects of continuing interest to her related to animals, to children and to our value systems. INTERACTION TYPE: Interview via skype.

22. PARTICIPANT NAME: JANET SUNITA PARTICIPANT LOCATION: New Delhi, India PARTICIPANT ID NAME: HP11 Janet Sunita RESEARCH RELEVANCE: Janet is one of four co-founders of Caregivers Link, a new online/offline resource for caregivers in India. Janet is a business management professional with over 3 decades of experience in the corporate, banking and social development sectors. She is currently working with an NGO as Director Administration and Finance in New Delhi. She is a former caregiver to her extended family including her mother, youngest son and sister-in-law. INTERACTION TYPE: Interview via skype

20. PARTICIPANT NAME: DEVASHRI MUKHERJEE PARTICIPANT LOCATION: Mumbai, India PARTICIPANT ID NAME: HP05 Devashri Mukherjee RESEARCH RELEVANCE: Devashri Mukherjee is one of four co-founders of Caregivers Link, a new online/offline resource for caregivers in India. She has worked with Ashoka: Innovators for the public and has over two decades work experience in the Indian citizen sector, having been involved in exciting initiatives at an education resource center, a leading Indian funding agency, and one of the first education portals of India. Her interest lies in creating childrens education material, and her childrens stories have been published as resource

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23. PARTICIPANT NAME: SWAPNA KISHORE PARTICIPANT LOCATION: Bangalore, India PARTICIPANT ID NAME: HPAD03 Swapna kishore RESEARCH RELEVANCE: Swapna Kishore is the founder of

25. PARTICIPANT NAME: MR RAVI MAHARAJ PARTICIPANT LOCATION: Bangalore, India PARTICIPANT ID NAME: HPAD07 Mr Ravi Maharaj RESEARCH RELEVANCE: Mr. Ravi Maharaj is a current caregiver who is connected to Swapna Kishores support network. He is an informal caregiver to his father who is a dementia / Alzheimers patient since 2006. He also participates in a subsequent group interview with his family. INTERACTION TYPE: In-person interview at her residence.

28. PARTICIPANT NAME: KOLKATA ARDSI PARTICIPANT LOCATION: Kolkata, India PARTICIPANT ID NAME: HPAD12 Kolkata ARDSI RESEARCH RELEVANCE: The ARDSI Calcutta chapter, founded in 1999, provides awareness programs, family counseling, caregiver training, memory screening camps, and specialized care to dementia patients in their Dementia Day Care Center. ARDSI Kolkata provides specialized counseling at its office and patients homes to help family caregivers develop appropriate care plans. They also train family caregivers to improve their care-skill and hold carer support group sessions. INTERACTION TYPE: In-person group observation and interview

26. PARTICIPANT NAME: MS. DEVI MAHARAJ PARTICIPANT LOCATION: Bangalore, India PARTICIPANT ID NAME: HP08 Ms. Devi Maharaj (Ravis Daughter) Secondary Caregiver (Anonymized) RESEARCH RELEVANCE: Mr. Ravi Maharaj is a current caregiver who is connected to Swapna Kishores support network. Ravis family as part of an informal caregiving family to his father who is a dementia / Alzheimers patient since 2006. INTERACTION TYPE: In-person group interview.

27. PARTICIPANT NAME: MRS. HEMA MAHARAJ PARTICIPANT LOCATION: Bangalore, India PARTICIPANT ID NAME: HP08 Mrs. Hema Maharaj (Ravis Sister) Tertiary Caregiver(Anonymized) RESEARCH RELEVANCE: Mr. Ravi Maharaj is a current caregiver who is connected to Swapna Kishores support network. Ravis family as part of an informal caregiving family to his father who is a dementia / Alzheimers patient since 2006. INTERACTION TYPE: In-person group interview.

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A HOTHOUSE 2011 EXPERIENCE RESEARCH STUDY ON INFORMAL CAREGIVING IN INDIA & FINLAND