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International Conference on eHealth, Telemedicine, and Social Medicine

Towards a Tele-assistance Service for the Cognitive Stimulation of Elders with Cognitive Decline

Alberto L. Morn, Victoria Meza-Kubo


Facultad de Ciencias, UABC Ensenada, B.C, Mxico e-mail: {alberto_moran, mmeza}@uabc.mx
Abstract Thanks to advances in science and technology, the life expectancy of human beings has increased steadily at a constant rate. Unfortunately, this had made evident the increasing incidence of age-related diseases, such as Alzheimer's disease (AD). Although there is no cure for AD, the literature reports that people who frequently participates in cognitive stimulation activities reduces the risk of presenting it or improves their cognitive abilities. Aging-in-place and telemedicine make possible the provision of medical services to elder adults in their homes, in order to reduce hospitalization costs and to increase patient comfort in their home. Aiming at understanding the processes that occur in cognitive stimulation, and how they could be supported through technology, we present a characterization of the activities performed during a stimulation session of people suffering from AD. We also present a preliminary set of design insights that designers and developers of tele-assistance services could consider for the development of such systems. Elders; Tele-assistance; Cognitive Stimulation; Design insights

I.

INTRODUCTION

According to the U.S. Census Bureau projections, the population of older adults will double by 2030, from 36 to 72 million, an increase from 12% to 20% [1]. This has made apparent the rising incidence of age-related diseases, such as Alzheimer's disease (AD). The World Health Organization (WHO) has reported that AD has risen to the sixth place in the list of leading causes of death [2]. It also reports that there are nearly 18 million people worldwide suffering from AD and it is projected to double to 34 million by 2025 due to population aging. For this reason the WHO has called to pay special attention to the diseases risk factors and to identify preventive measures taken to postpone its appearance [3]. Currently, there is no cure for AD [4]. In the absence of a cure, a multidimensional therapeutic approach that includes, in addition to pharmacological interventions, nonpharmacological interventions aimed at optimizing cognition, behavior and function of subjects with dementia and that also meets the needs of caregivers [5]. II. COGNITIVE STIMULATION One of the non-pharmacological interventions is Cognitive stimulation (CS). The aim of CS is to stimulate and maintain the existing cognitive abilities, intending to
978-0-7695-3532-6/09 $25.00 2009 IEEE DOI 10.1109/eTELEMED.2009.26 160

maintain or improve cognitive functioning and reduce dependence of the patient, and this by working on the remaining skills of the person and avoid the frustration of the patient. CS is used to treat individuals with mild to moderate dementia in sessions of active stimulation through activities that aim to improve and maintain overall cognitive functions (e.g. memory, language, attention, concentration, reasoning, abstraction, arithmetic, praxis and gnosis) [6]. Recent published research work provides evidence on the fact that a person who participates often in CS activities reduces the risk of suffering AD, or improves his/her cognitive behavior [7], [8]. Additionally, it is worth noting that cognitive decline without dementia also presents itself as a consequence of normal aging, affecting the memory, attention and information processing speed of the elder adult. Therefore healthy adults also participate in CS programs due to its beneficial effects on cognition at long and short terms [9], [10]. Thus, the scope and applicability of pharmacological and non-pharmacological treatments in patients may vary depending on the stage or degree of cognitive impairment of the elder adult [11]. Fig. 1 outlines three possible scopes of CS identified based on the literature. It also shows the scopes relation to the level of cognitive impairment and of dependence of the adult as the disease progresses. A brief description of them follows: Prevention and early detection Worried well. As the age of the adult increases to become an elder adult, the concern for maintaining health and preventing disease also increases. At this stage, characterized by healthy and independent-living adults, but prone to various age-related diseases (worried well), CS seeks to prevent or delay the onset of these diseases. At the same time, specific evidence can be obtained through the monitoring of cognitive stimulation activities for the early detection of these diseases [9], [12] and [13]. Delay deterioration - Patients with mild - moderate cognitive impairment. Early detection of mild and mildmoderate cognitive impairment increases the chances of elder adults in an attempt to slow the progressive and inevitable deterioration of their cognitive abilities. CS at this stage seeks to maintain the independence of the elder adult, which can be gradually compromised by episodes of increasingly evident cognitive abilities loss [8].

DEPENDECE

Cognitive Stimulation for


? Maintenance of Basic ADLs Delay Deterioration

INDEPENDENCE

Prevention & Early Detection

Healthy WORRIED WELL

Mild

Moderate

Severe

ELDERS SUFFERING COGNITIVE DECLINE

Figure 1. Cognitive stimulation scopes in relation to cognitive impairment and independence levels.

Maintenance of basic ADLs Patients with moderate cognitive impairment. Once the elder adult reaches a state of moderate deterioration due to the disease, the loss of motor and cognitive abilities is more evident. The elder adult becomes increasingly dependent, so that CS focuses mainly on helping him/her to strengthen those preserved capabilities to maintain independence at least in basic ADLs [14]. Additionally, for the stage of severe cognitive deterioration, in the literature it can be seen a shift in the focus of attention from the elder patient to the caregiver. This is because the patient arrives to a state of complete deterioration of the personality and a loss of control over his/her body, so that he/she becomes entirely dependent on others. Under these conditions of mental and physical deterioration, non-pharmacological treatments are aimed at supporting caregivers to cope with situations such as interruption of treatment, how to nurture and when to stop nourishing, the patients admission to a hospital or residence, elaborate the separation and grief [15]. III. AGING-IN-PLACE AND TELEMEDICINE Because the home is where many of the activities of our lives occur, staying in this environment has a positive impact on the health, wellness, security and independence as age increases [16]. Thus, for elder adults, staying at home for as long as possible is a priority in their desire to maintain their independence at least at that location. Furthermore, as the highest cost of care for patients with cognitive impairment is related to their professional care in hospitals or specialized institutions, the number of patients who are cared for in their homes has increased in an effort to reduce hospitalization costs and to increase patient comfort in their family environment [17]. Under this approach, although a vast infrastructure has been developed to treat diseases within hospitals, it is now necessary to design an infrastructure to maintain adults wellness in their own homes (e.g. preventive care, disease detection at an early stage, and informal care). Aging-in-Place seeks to address this need, with a vision of personal wellness systems at home, which provide individualized support for health care in all age groups [18]. Several advances in technology have been applied in many environments to help elder adults in this regard, including the development of an architecture of intelligent services at home [16].

However, Aging-in-Place makes evident several challenges and problems related to the care of elder adults at home. Let us consider the case of specialized treatments that are regularly provided at specific care centers, where the required materials, equipment and personnel are available to provide specialized care. This makes necessary for elder adults to have to leave their homes and move to these specialized sites. For example, [19] reports that the lack of specialists sometimes requires that elder adults from rural communities commute for up to three hours to get specialized care, thereby causing discomfort, unnecessary risks and high costs for the elderly and their families. Concerning this problem, in recent years several efforts have been implemented to support the families of patients with progressive dementia (e.g. Alzheimer's disease) to assist the affected person and their relatives in their own homes. An example of these efforts is AlzOnline, a program for the support and education of the community, which provides help to the relatives of elders with dementia through an internet and telephone based network [20]. Another example is the development of a protocol for the remote diagnosis of AD through videoconferencing [21], and which reports on evidence of the effectiveness of this type of diagnosis when compared with the direct way of doing it. This has been achieved thanks to advances in technology to provide distant assistance, from the telephone, through sensors, video, and monitoring algorithms, to telemedicine. Telemedicine is defined as the provision of medical services, including diagnosis and treatment, as well as the sharing of medical knowledge at a distance, using telecommunication technologies [22]. Telemedicine has been used extensively in pre-hospitalization immediate medical treatment, monitoring of patients in intensive care units (ICU), and monitoring of patients at home [22]. The main objective of our work is to provide technological support for CS through ICT, and with this, to provide support in the search for mechanisms to slow the diseases progression in people who suffer from cognitive impairment, and for the early detection of the disease. To this end, this article presents the results of a characterization of the interactions of a CS session in order to identify areas of opportunity for the development of tele-assistance systems. These systems must allow the provision of assistance, monitoring and feedback from experts to the patients and their relatives during a CS session at their home. Also, a set of design insights for the construction of tele-assistance systems aiming at providing support for CS sessions at a distance are identified and presented. IV. METHODOLOGY OF THE STUDY Workplace studies are playing an important role in human-computer interaction research and considerable attention has been paid in acquiring rich data that allows researchers to conduct detailed analyses of the nature of work in different environments [e.g. 23]. To understand the efforts being made at a CS session, we performed an observational study in a residence for patients with cognitive disorders like AD. In this study we performed data acquisition using conventional unstructured techniques (non161

participatory observation, indirect observation through video recording, and unstructured interviews). The actual CS session lasted about 40 minutes and there were 13 actors participating (10 patients with different degrees of decline, and 3 caregivers). These numbers are similar to those in [8] and [13]. The session started with the caregivers inviting and bringing the patients to an open yard area equipped with tables and chairs. Caregivers also brought stimulation materials, choosing which they will use with each patient during that session (e.g. wooden, plastic or foam puzzles, interlocking bricks, and memory and bingo games, among others). Materials have to be safe in order to prevent any accidents, such as injuries or suffocation. As patients started to arrive to the yard, they were placed at particular spots according to their degree of cognitive decline or to other patient or caregiver preference criteria. Materials and activities were also assigned to patients, as well as indications and initial supervision, allowing them to start to perform the stimulation activities. There were some patients that decided not to participate in the activities, and remained seated (1) or started wandering through the yard enjoying their being out in the open (1). Also, there were patients that although started to perform the activities, stop after a while and only watched others performing the assigned activities (2). This wide range of behaviors was allowed by caregivers in order to avoid others (such as crying, yelling, or being aggressive) which may result from patients being forced to perform the activities. Finally, there were others that actually concentrated on the task, interacting with materials, and performing the assigned stimulation activities (Fig 2). We put special emphasis on understanding the purpose or function of the interactions that occurred between subjects, and with materials. In addition, in order to gain a better understanding of the why of some behaviors and interactions, semi-structured interviews with participant caregivers were conducted. Our goal was to obtain a preliminary sample of the interactions and behaviors of those present. This allowed us to identify the form and function of these interactions, as well as some of the problems that the participants engaged in the stimulation activity (patients), and those guiding it (caregivers), faced.

TABLE I.

CLASSIFICATION OF INTERACTION TYPES AND IDENTIFIED, ACTORS AND FUNCTIONS. Interaction functions
Actor-Actor (A-AI)

Actors involved Patient-Caregiver (P-C) Caregiver-Patient (C-P) Caregiver-PatientPatient (C-P-P) Caregiver-Caregiver (C-C) Caregiver-Materials (C-M) Patient-Materials (P-M)

Request help to caregiver Request to leave the activity Give instructions to patient Encourage patient Provide feedback to patient Feedback and help between patients Feedback and demonstration among patients Give directions to another caregiver Seek help or delegating a task Request information regarding a patient
Actor-Materials (A-MI)

Choose materials for a patient Deliver materials to patient Remove materials from the table Carry out the stimulation activity

V.

OBSERVED INTERACTIONS

Based on the observational study conducted we identified a set of actors, a set of interactions that occurred among them and of them with the materials used for conducting the CS activity, as well as some of the functions of these interactions (see Table 1). A brief description of some of these interactions, as well as their identified functions and forms, follows. A. Actor-Actor Interactions (A-AI) These are the type of interactions that occur between two participants during the activity, whether between patients, caregivers or combinations of them. 1) Patient-Caregiver Interaction (P-C). Occur between the patient and the caregiver, with the patient starting it. The interaction starts with a call from the patient to the caregiver, who responds and attends the request. Identified functions for this type of interaction are: Request help and request to leave the activity. 2) Caregiver-Patient Interaction (C-P). The patient and the caregiver are also involved, but the interaction is initiated by the latter. Functions identified include giving directions to the patient, encouraging him/her, and providing feedback to the patient regarding the stimulation activity. 3) Caregiver-Patient-Patient Interaction (C-P-P). Occur when a caregiver allows or promotes the integration of a second patient to the activity of a first one. The functions identified include caregivers feedback combined with help or demonstration among patients. 4) Caregiver-Caregiver Interaction (C-C). This kind of interaction occurs when a caregiver interacts with another during the CS session. The functions identified for this type of interaction include giving directions to another caregiver, seek help or delegate a task, and request information regarding a patient.

Figure 2. Actors interacting among them and with materials in a cognitive stimulation session.

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B. Actor-Materials Interactions (A-MI). This kind of interactions occurs between an actor, whether a patient or caregiver, and the materials used in CS activities. 1) Caregiver-Materials Interaction (C-M). As its name implies, this type of interactions occur between the caregiver and the materials, and are related to the preparation or configuration of the CS activity. The functions that were observed for this type of interactions are choosing materials for a patient, deliver materials to a patient and remove materials from the table. 2. Patient-Materials Interaction (P-M). In this type of interactions, the patient participates with the involved supporting materials. It basically consists in carrying out the activity assigned to him/her. Thus, the function of this interaction is carrying out the CS activity. C. Examples of the form of observed interaction functions. 1) Request help (A-AI, P-C). Once materials have been provided to the patient, he/she works with it on an individual basis, while the caregiver remains as an observer. The interaction starts when the patient asks for the support of the caregiver, because he/she requires assistance to continue with the activity. An example of this type of interaction occurs between caregiver C1, and patient P1. P1 is about to finish putting together a wooden puzzle of numbers but lacks the last piece that she cannot find, then she requests support from C1. P1: Which [one] is the four? [Addressing to C1]. C1: Which [one] is missing? [moving the piece closer to her]. P1: Is this the four?. C1: Yes. P1 takes the piece and inserts it into the right place. 2) Give instructions to the patient (A-AI, C-P). This function usually occurs at the time of assigning an activity to a patient, and refers to the fact that the caregiver gives him/her the materials, and gives instructions on how to carry out the activity. The following is an example of an interaction between caregiver C1 and patient P4. C1 takes a wooden puzzle of numbers from the table and places it in front of P4. He then gives instructions to her. C1: Look P4, these are the numbers; you know what are the numbers, right? P4: Yes. C1: Let's see, these you have to put them in here and you have to look to which it resembles most. P4 points to one of the spaces, confirming the instruction. C1: Look, here is number one and there is a kite. It fits in here what are these? P4: Sheep. C1 leaves P4, so that she continues with her activity. 3) Feedback and help between patients. This function occurs when the caregiver is providing feedback to a patient
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who has difficulties to perform an activity, and a second patient, who observes, integrates himself/herself to provide help to the former so that he/she concludes with the activity. This case is illustrated by the interaction between caregiver C1 and patient P4, and the manner in which patient P1 is integrated into the activity of P4. C1 is providing help to P4 in the activity. P1, whom has finished with his/her own activity, observes them. C1: Which one follows the [number] six? (asks C1 to P4). P4 does not provide an answer, and continues to observe the pieces. P4: Seven (answers after a little while). C1: Look for number seven then, look [pointing to a heap of pieces on the table], which one of these is number seven? P4: This one (pointing at one of the pieces). C1: That one is not number seven. P1, who has been observing the scene, and knows the answer, decides to participate. P1: This is number one (pointing at the right piece). C1: That is right, that is number seven. 4) Feedback and demonstration among patients. This function occurs when the caregiver integrates a second patient to demonstrate how to perform the activity in a correct manner to a first patient. It was observed that in such cases patients have different degrees of impairment. In the example below, caregiver C1 and patient P10 are interacting and patient P1 will be integrated into P10s activity. C1 is providing feedback to P10 regarding his/her activity. P1 is located in the same table, and has concluded her own activity, when C1 integrates her into P10s activity. C1: P1, show us how it should be done (and pushes the puzzle towards P1). Initially, P1 does not know what to do. P1: I dont know what to do (and starts to focus on the puzzle). C1: Dont say you dont know, try it. P1 takes one of the pieces and places it into the right place. P10 observes them. C1: (puts one of the pieces into P10s hand) now you try it. P10: (tries to insert the piece into a certain spot). 5) Give instructions to another caregiver (A-A I, CC). This function occurs when one of the caregivers addresses another to give indications regarding the care, or seating of a patient, or regarding how to perform the stimulation activity. In the example below, caregiver C2 brings patient P2 to the yard, then caregiver C1 tells C2 where to seat P2.

C1 is working with P1 and P10, when C2 brings P2 to the yard, C1 tells C2 to place her in the worktable where C1 is taking care of P1 and P10. C1: Bring her to this side, bring P2 here. C2: Yes, in the shadow, remember that P2 does not like to be seated in the sun. C2 brings P2 to the table, and sits her next to P1. Then C1 assigns her an activity. During the interview caregivers said that patients are seated according to their cognitive decline level, based on the caregivers possibility to take care of several patients simultaneously, the affinity between patients, or considering other patients preferences. In the previous case, the patient was seated based on the possibility of the caregiver to attend her and on the preferences of the patient. 6) Request information regarding a patient. This function occurs when one of the caregivers need to know something about a patient with which he/she is going to work (eg preferences, behavior, care, etc.). The following example shows the interaction between two caregivers, when one of them is going to start taking care of a patient he does not know. C2 is giving the materials and assigning an activity to P5. C1 is taking care of P9 at another table. C2: C1, Is P5 used to get up from the table and leave the activity? C1: If you are standing close to her, she does not. After giving P5 the materials, C2 remains standing close to her while she performs the activities. When asked about P5s behavior, C1 said you have to be standing close to her all the time, otherwise, as soon as she notices that you are not there, she stands up and leaves the CS activity. 7) Choose materials for a patient (A-MI, C-M). This kind of interaction occurs prior to the allocation of an activity, and its related materials, to a patient. The caregiver chooses materials depending on the patient to whom it will be assigned, taking as selection criteria the patient's preferences and degree of cognitive impairment, as well as the activitys degree of complexity. C1 walks to the table of materials. C1 takes a group of foam rubber puzzles and observes them one by one, until he chooses one of them. Once the material is chosen, he takes it to the work table and puts it in front of P1. VI. DESIGN IMPLICATIONS Based on the results of the previous characterization of interactions, we identified insights (see Table 2) that a system that seeks to support these activities through technology should consider. However, this insights were identified during a collocated cognitive stimulation session (i.e. all the participants and required materials were present at the same place at the same time). Thus, it is necessary to
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consider and envision the use for the case when participants and materials are distributed in space or time (as in a teleassistance session). Firstly, considering Session Management (insight 1), technology that automatically detect events (e.g. start, suspend, resume) to follow and register patients activities could be introduced (e.g. context-aware computing or activity recognition). In addition, considering spatial distribution, the system must know the identity, presence status and permissions of all participants in order to allow them to participate in the session regardless of their distributed location. Further, considering temporal distribution, the system should allow not only obtaining and forwarding session information, but also recording it to create a historical record of sessions so that these can be reviewed asynchronously.
TABLE II. IDENTIFIED INSIGHTS TO SUPPORT A COGNITIVE
STIMULATION SESSION

Session Management 1. Patients may undertake the stimulation activity, suspend it and resume it, as needed. Interaction with Materials 2. Caregivers may establish a priori an ensemble of materials to be used to conduct the stimulation activity, based on the patients preferences, impairment level, degree of difficulty of materials, etc. 3. Caregivers may deliver materials to patients, with the possibility of customizing the delivery according to the capabilities of the patient. 4. Patients may further choose or customize the materials according to their own preferences. Awareness 5. Caregivers should monitor the stimulation activity of more than one patient simultaneously. 6. Caregivers should have awareness of whenever they are required to change the materials to a patient. 7. Caregivers should have awareness of the activity level and of the correctness of the activity of patients, in order to detect and intervene whenever is necessary to encourage or provide feedback to them. Communication and Collaboration 8. Patients could ask for help or request to leave the activity as required, and caregivers should realize that there are requests, and proceed accordingly. 9. A second patient could join the stimulation activity of a first patient, to provide help or to demonstrate the proper way to conduct the activity as required. 10. Caregivers may specify instructions for the patients activity, and the patient may obtain those instructions as required, even in the absence of the caregiver. 11. Caregivers may give or receive instructions from other caregivers in a simple and transparent manner. 12. Caregivers may seek or provide help or delegate a task to other caregivers. 13. Caregivers may give information, or get it from others, regarding a patients degree of cognitive impairment, special care needs, etc.

Regarding Interaction with Materials and Materials Customization (insights 2 4), the use of virtual materials could be explored. However, in order to maintain the interaction mechanism (direct manipulation), alternatives to the mouse and keyboard could be used (e.g. touch or tangible interfaces). In addition, regarding spatial distribution, the system should allow maintaining a distributed and shared representation of the materials, whether virtual, physical or a

combination of them (e.g. tangible), so that any participant could observe and interact with them regardless of their being physically distributed. Also, regarding temporal distribution, recording and replay of actions on materials should be possible. It is worth noting that for remote customization and interaction, physical materials and additional means of physically interacting with the remote objects should be required. A remotely-controlled robot or an informal caregiver at the patients side could be introduced. Concerning Awareness (insights 5 7), monitoring and notification systems that address activity level and artifact or materials use, could be introduced (e.g. collaboration awareness, and pervasive or ubiquitous computing systems). Additionally, concerning spatial and temporal distribution, the system should be able to deliver this information regardless of the physical distribution of the participants in a timely adequate manner. Further, intrusiveness management should be considered in this case, so that the monitoring process is not too intrusive that patients perceive it as being uncomfortably watched, or the notifying process is not salient enough that caregivers do not become aware of the notified events. Finally, regarding Communication and Collaboration (insights 8 13), lightweight communication and collaborative support could be used (e.g. distributed virtual and augmented collaborative environments). However, caution should be exercised in order to lessen the cognitive interaction, communication and collaboration load that these systems could introduce on the patients side. VII. CONCLUSIONS The increase in life expectancy of human beings, has not only made apparent the increased incidences of diseases associated with aging, as the Alzheimers disease (AD), but also has posed a challenge in terms of whether and how technology could support their treatment. The increasing costs of patient care at specialized institutions and the search for wellness of patients in their homes requires going beyond the barriers of collocation. For this reason, tele-assistance looks as a promising alternative to explore. In this work, in order to contribute to the search for answers to these questions, we propose a preliminary characterization of the interactions that occur in a CS session, and a preliminary set of design insights to be considered for the development of a tool that seeks to provide computer support for such activities, both in the face-to-face and tele-assisted ways. As future work we will continue to work to characterize actor behaviors, and to implement and validate the characterization and the insights through the development of tele-assistance systems to support the activities of CS of patients with AD in their homes. ACKNOWLEDGMENT We thank the support and participation in the study of the personnel and patients of Residencia Lourdes. This work was partially funded by UABC under grant 0191 of the XI Convocatoria Interna de Proyectos de Investigacin.

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