Beyond Caring For The Senile: Experiences of Primary Caregivers With Family Members Diagnosed With Alzheimer's Disease

UNIVERSITY OF THE PHILIPPINES LOS BAÑOS
COLLEGE OF ARTS AND SCIENCES
Bachelor of Arts in Sociology
ANNA KATRINA GARCIA QUANICO
BEYOND CARING FOR THE SENILE: EXPERIENCES OF PRIMARY

CAREGIVERS WITH FAMILY MEMBERS DIAGNOSED WITH
ALZHEIMER’S DISEASE
SHIELA MAY T. JULIANDA

Department of Social Sciences
University of the Philippines Los Baños
June 2018
Permission is given to the following people to have access to this thesis:

Available to the general public YES
Available only after consultation with author/thesis adviser NO
Available only to those bound by the confidentiality agreement NO
Student’s signature: _________________________________________________

Signature of thesis adviser: ___________________________________________
BEYOND CARING FOR THE SENILE: EXPERIENCES OF PRIMARY
CAREGIVERS WITH FAMILY MEMBERS DIAGNOSED WITH
ANNA KATRINA G. QUANICO
Submitted in partial fulfillment of the

Requirements for the Degree of
BACHELOR OF ARTS IN SOCIOLOGY
Department of Social Sciences

College of Arts and Sciences
College, Laguna
June 2018
ii
The thesis attached hereto entitled, BEYOND CARING FOR THE SENILE:
EXPERIENCES OF PRIMARY CAREGIVERS WITH FAMILY MEMBERS
DIAGNOSED WITH ALZHEIMERS DISEASE, prepared and submitted by ANNA
KATRINA GARCIA QUANICO in partial fulfillment of the requirements for the degree
of Bachelor of Arts in Sociology is hereby accepted.
SHIELA MAY T. JULIANDA

Adviser
Date
DWIGHT DAVID A. DIESTRO

Chairperson
Department of Social Science
Date
Accepted as partial fulfillment of the requirements for the

degree of Bachelor of Arts in Sociology
DR. FELINO P. LANSIGAN

Dean
College of Arts and Sciences
Date
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BIOGRAPHICAL SKETCH
The author, Anna Katrina Garcia Quanico, was born on August 28, 1998 in Jeddah,
Kingdom of Saudi Arabia. She is the youngest child of Elmer Bustamante Quanico and
Fortunata Carlota Garcia. She started school at the International Philippine School of
Jeddah where she finished Kindergarten as the 8th placer in academics. She continued her
studies at the Gems International School in Jeddah and later transferred to St. Joseph’s
Academy in Sariaya, Quezon to finish both her elementary and secondary education. Her
diligence and hardwork enabled her to enter the University of the Philippines Los Baños
(UPLB) under the curriculum of the Bachelor of Arts in Sociology.
Her interest in familial dynamics and relations started when she took the course
Sociology of Family. She then continued to study Interactional Family Dynamics with the
guide of her adviser, Professor Shiela May T. Julianda, of the Department of Social
Sciences.
The author is a proud member of the UPLB Sociology Society and the Philippine
League of Sociology Students- UPLB Chapter. She served as the Membership Committee
Head during the AY 2016-2017 and has been elected as the Secretary on her last years in
the university. Her years of residency to the organizations honed her to be critical, holistic,
and dynamic which helped her understand society better.
i
ACKNOWLEDGEMENTS
Behind the success of my journey as a BA Sociology major, is the many people

who supported me despite my failures. Through this last step to leaving the university as
an undergraduate student, they deserve my utmost honor and thanks.
First of all, my thesis adviser, Prof. Shiela May T. Julianda. The guidance and
support that I have received through her enabled me to embark and finish my journey
completely. Without the encouragement from her, I would not be on where I am today.
I would also like to thank the Memory Care Center of St. Luke’s Medical Center
Quezon City. Most especially to Ma’am Peachy because without her, I will not be able
to tell the stories of our dear primary family caregivers. She served as the sole bridge for
those stories to be told to the larger public.
To those who shared their story, Ma’am Buenafe, Ma’am Sandra, Ma’am
Marlene, Ma’am Jacqui, Ma’am Luisa, Dr. Soriano, Ma’am Peachy. My success is all
because of you and I am beyond grateful that you helped me achieved it.
I would like to thank my brods and sisses, Ian, Reg, Joaquin, Rai, Charm Anne,
Janine, and Ein. The organization helped me in my hardest times in academics and in life.
The UPLB Sociology Society made it easy for me to live despite the challenges in life.
In the times I find graduation seemed unreachable, I would like to express my

gratitude to Jerome and Gabby. I will not forget the times we shared laughter and tears.
Thank you for the motivation which I carried throughout this journey.
A deep appreciation to Yves, Renz, Thara, Dadan, and Gab. You have treated
me as one of your batchmates and for that I found my thesis buddies. I will carry the
memories even at the peak of my future endeavors.
To my beloved Panopticon, Carla, Iyen, and Oliver. You made it hard for me to
leave the university. You are the ones who make graduation feel sad because you
completed my stay here in the university. But as I face a different journey as this one ends
and as you continue yours, remember to always keep in touch.
ii
To my friends whom I treated as family, a sincere thank you. You have made this
journey meaningful and light. I will cherish the memories we shared and the many more
memories we will still make.
Lastly, the real successors in this journey, Papa, Mama, Kuya Led, and Mark.
We made it! This success is for you. Thank you for the unending love and support. I will
forever embrace the morals and values you instilled in me. Cheers to our family for another
achievement!
Successfully voyaging,
UPLB
2018
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TABLE OF CONTENTS
BIOGRAPHICAL SKETCH ............................................................................................... i

ACKNOWLEDGEMENTS ................................................................................................ ii
TABLE OF CONTENTS ................................................................................................... iv
LIST OF TABLES ............................................................................................................. iv
LIST OF FIGURES ............................................................................................................ v
CHAPTER I INTRODUCTION
Background of the Study ................................................................................................. 1
Research Objectives ........................................................................................................ 6
Significance of the Study ................................................................................................ 7
Scope and Limitations ..................................................................................................... 9
Operational Definitions of Concepts ............................................................................. 10
CHAPTER II THEORETICAL FRAMEWORK ............................................................. 13
CHAPTER III REVIEW OF RELATED LITERATURE

Alzheimer’s and the Family .......................................................................................... 15
Alzheimer’s and the Aging Member .............................................................................. 16
Alzheimer’s and Its Effect on the Individual Family Members ..................................... 17
Changes in the Family due to Alzheimer’s Disease ...................................................... 18
Challenges Faced by Caregivers ................................................................................... 20
Perceptions and Attitudes of the Caregivers on AD Caregiving ................................... 21
Needs and Treatments of the Disease ........................................................................... 22
Coping Mechanisms and Interventions of Families ...................................................... 24
CHAPTER IV RESEARCH METHODOLOGY

Research Design ............................................................................................................ 27
Locale of the Study ....................................................................................................... 27
iv
Research Participants .................................................................................................... 28
Research Instruments .................................................................................................... 29
Data Collection Process ................................................................................................ 29
Data Analysis ................................................................................................................ 29
CHAPTER V RESULTS AND DISCUSSION
A. The Five Cases ....................................................................................................... 31

The Case of Buenafe ..................................................................................................... 31
Case of Sandra............................................................................................................... 34
The Case of Marlene ..................................................................................................... 36
The Case of Jacqui ........................................................................................................ 37
The Case of Luisa .......................................................................................................... 39
Summary of Characteristics of the Research Participants ............................................ 40
B. The Two Key Informants ....................................................................................... 41
Dr. Soriano .................................................................................................................... 41
Ma’am Peachy ............................................................................................................... 41
ANALYSIS ....................................................................................................................... 43
Theme I: The Family is Still a Functional Entity .......................................................... 43
Theme II: Living with Alzheimer’s is (Not) That Bad at All ....................................... 49
Theme III: Mahirap pero Kinakaya ............................................................................... 52
Theme IV: Making Things Seem Easy ......................................................................... 57
Theme V: Efficiency is the Key .................................................................................... 60
CHAPTER VI SUMMARY, CONCLUSION, AND RECOMMENDATION................ 69
REFERENCES ................................................................................................................. 71
APPENDICES .................................................................................................................. 75
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LIST OF TABLES
Table 1
Summary of the Sociodemographic Profile of the Research Participants ………40

Table 2
Summary of the Characteristics of the AD Patients……………………………..41
Table 3
Codes for the First Research Objective………………………………………….74
Table 4
Codes for the Second Research Objective……………………………………….76
Table 5
Codes for the Third Research Objective…………………………………………78
Table 6
Codes for the Fourth Research Objective……………………………………......79
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LIST OF FIGURES
Figure 1.
U.S. Annual AD Death Rate (per 100,000 people) by Year………………………3
Figure 2.
Projected number of People (in thousands) with Dementia in the Philippines…...5
v
QUANICO, ANNA KARINA GARCIA, University of the Philippines Los Baños, June
2018. BEYOND CARING FOR THE SENILE: EXPERIENCES OF PRIMARY
FAMILY CAREGIVERS WITH FAMILY MEMBERS DIAGNOSED WITH
ABSTRACT
In the Philippines, there are 5.25 million Filipino elderlies. Five or six decades later,
they will outnumber those who are aged 0-14. By that time, it is expected that there will be
over a million of those who suffer Alzheimer’s Disease and other dementing illness. As
the prominence of the disease increases, so does the demand for caregivers, whether paid
or not. The focus on providing care for the patients blinded the society to also consider the
state of the primary family caregivers. This study captures the experiences of primary
family caregivers by understanding the situational context of the family. Using the Family
Development Theory, it can clearly be seen in the results of this research that in the current
state of the family where a member has Alzheimer’s, the family statics which includes the
roles, positions, norms, normative demands, and the state of the family and family
members, may bring forth both positive and adverse effects to the family dynamics along
with the relationships, bonds, communication, and functions within the family. With the
gathered responses, five themes were generated: The Family is Still a Functional Entity,
Living with Alzheimer’s is (Not) That Bad at All, Mahirap pero Kinakaya, Making Things
Seem Easy, and Efficiency is the Key. These themes discuss the changes in the family and
within the family caregivers, the struggles and difficulties of the caregivers, interventions
for different behavioral difficulties, and coping mechanisms to provide better care to their
AD member. Some families experience a strengthening of relationships because of how
their families bond and cooperate with each other. However, some relationships depreciate
and thus affects the caregiving attitudes of the primary caregivers. By having this research,
families and family caregivers would enable to efficiently live with Alzheimer’s Disease.
Moreover, organizations and government policies will be able to help the primary family
caregivers alleviate caregiver burden through caregiver orientations and policies.
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CHAPTER I
INTRODUCTION
“In the beginning of life, when we are infants, we need others. In the end of life, we still
need others. But here’s a secret: in between, we still need others” – Mitch Albom
Background of the Study
Of the 5.25 million aging member of the Philippines as of 2016, a 4.2% increase is
expected by 2030 (Help Age Global Network in Badana and Andel, 2018). Five decades
from now, the elderly population may outnumber those aged 0-14. Even though, in the
Philippines, there is still a positive outlook on aging where elderlies are still productive.
Recently, the RA 10911 or the Anti-Age Discrimination in Employment Law is
implemented and enforced to honor the ability of aging members of the Philippine
community to participate in the labor force.
However, Villegas (2014) identified that Filipino elderlies are still dependent on
their families. In response to dependency, Filipino families, compared to other Asian
families, do not fail to consider caring for their aged members (Badana and Andel, 2018).
Failure to do so is incorporated in the concept of “hiya” in the Filipino culture. Moreover,
the belief and religious system in the country reinforces the desire of the family members
to provide care for their elderly. The support of the families on the aging population
nonetheless is not enough to provide their needs and demands particularly those who have
conditions like Alzheimer’s disease.
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As irreversible and progressive as it is, Alzheimer’s disease also known as AD is a
neurodegenerative disease that is mostly experienced by elderly people (Alzheimer’s
Association, 2017). According to the National Institute on Aging (2017), though majority
of those who get AD are those who are in their 60’s, there are statistical reports that show
that even young people or those whose age are below 60 can also acquire the disease.
Although such cases are rare, the number of conditions continuously and gradually
increase (Alzheimer's Association, 2017). According to the statistics provided by the
Alzheimer’s Disease Association of the Philippines, a 200,000 increase from 2004 to 2015
was observed in the country.
Alzheimer’s disease is an unstoppable disease that progresses quickly the moment
it starts. Symptoms vary from the inability to remember simple things, do everyday tasks
to mood swings to cognitive impairment and total memory loss. This is why total care for
AD patients is needed. Until today, there is no known cure for Alzheimer’s disease. There
are treatments but it only slows down the progression of the disease (Alzheimer's
Association, 2017). Annually, deaths due to AD increases as shown in Figure 1. In the
United States, last 2014, there is a reported 29.4 thousand deaths. In relation to other
diseases, the rate of its increase is greater that other illnesses like cardiovascular diseases,
strokes, breast and prostate cancer, and HIVs (Alzheimer’s Association, 2017). The
absence of treatments leads to further research and implementation and recommendation
of total care for the patients (Medline Plus, 2017).
It is not only the patients who suffer from Alzheimer’s but also the caregivers,
moreover family members who became primary caregivers. Care is needed by the patient
given the situation where cognitive abilities start to decline. Family caregivers experience
2
various kinds of feelings and emotions like anger, frustrations, and pity. These feelings are
mainly caused by the absence of treatments and medications to alleviate the progression of
the disease (Alzheimer’s Society of Canada, 2014). But aside from the psychological
effects of the disease, there are also sociological effects to family caregivers (Impressions
Memory Care, 2017).
Alzheimer’s not only affect the
family caregivers but the family as a
functional entity. Changes in the family
starts with the designation of the
primary caregiver which then causes
changes in the roles of the family
members (Juergen & Blau, 2002).

Figure 1. U.S. Annual AD Death Rate (per
100,000 people) by Year Comes with the roles are the
Source: Alzheimer’s Association, 2017
responsibility of every member of the
household. The primary caregiver of the patient needs to attend to the patient even at their
minute needs. Juergen and Blau (2002) explained that trust builds on the primary caregiver
when the patient feels secured. As for those who are not the primary caregiver, it is advised
that they still become involved in the caring process by helping at times. This alleviate the
stress that is commonly observed on primary caregivers. Moreover, other family members
are also encouraged to always be informed and take the tasks left like doing errands that
would entice going outside the house, or buying the diapers, foods, and toiletries.
3
Juergen and Blau (2002) explained that whether one is a primary family caregiver
or not, it must be observed that criticizing the patient at any kind will not be tolerated.
When in need to communicate with wrongdoings, it is best to be constructive. Dynamics
like these are only a few of what families must consider. Responsibilities also tend to
change. Juergen and Blau (2002) emphasized that responsibilities in taking care of the AD
member will not be equal between family members however deserting the AD patient will
only hasten the deterioration of the functionality of the patient.
According to Juergen and Blau (2002), it is prominent for families to have a change
in roles because there is always a role that will be left by the AD member. In these changes
of roles between members, relationship also changes. They stated that simple things (i.e.
paying bills, managing money, making decisions, driving, etc.) may mean that someone
has lost their status. Roles between husband and wife and parent and child changes. There
is an observed switching of roles. The children, when their parents have Alzheimer’s, must
be ready to take responsibility of handling not only what was left of their parents but also
the role of their parents in their family.
The changes in the family dynamics may bring problems and conflicts between
family members, Juergen and Blau (2002) added. A solution to these is a family
conference. In a family conference, members communicate about problems and solutions.
It is also through conferences that families make plans for current and future needs and
make designations of tasks to members. Family conferences also helps in discussing money
and possessions including the will of the AD patient, inheritances, and bills. Juergen and
Blau (2002) suggests that the past conflict of the family members must dissolve first before
dealing with AD. However, although there are available solutions to better give care to AD
4
patients without risking the functional dynamics of the family, there are cases in which
families struggle to live with Alzheimer’s Disease.
Figure 2. Projected number of People (in thousands) with Dementia in the Philippines
Source: https://www.statista.com/statistics/738346/philippines-projected-number-of-people-with-dementia/
In the Philippines, Figure 2 shows the prominence of Alzheimer’s in the Philippines
that is expected to increase in 2030 and 2050 (Statista, 2014). Filipino families are reported
to manage caregiving struggles yet struggles in living with AD is situational depending on
the family context. According to Uhlenberg & Mueller (2003), there are three aspects to
consider when discussing family context. The first is the structure of the family. They
explained that although family and household differ in meaning, family structure pertains
to what the household is composed of. This aspect is concerned with who live with whom,
which parent or sibling is present, are the parents married, are those the biological parents,
is there a presence of a stepparent, and the like. The second aspect of family context is the
functional role of the family or the family dynamics. Family dynamics pertains to the
relationship of family members with each other and how these relationships are being
strengthen or weaken. The quality of relationship, they further explained, is a manifestation
5
of family interaction. Thus, this is also taken into consideration in covering family
dynamics. Lastly, capital is also one of the dimensions of family context. Capital refers to
economic and social capital of the family. It is not only the financial resources that are
being considered but also the knowledge, support, and influence of the family to other
social structures.
Situational family context is concluded to have significant effects on an individual’s
performance and well-being (Uhlenberg and Mueller, 2003; Morris et al., 2007). In this
study, situational family context will be understood to explain experiences of family
caregivers on caring for the AD patient.
Research Objectives
The study generally aims to present the experiences of primary family caregivers
of AD patients and explore how they provide better care by understanding their situational
context of the family. It also aims to provide answers to the following specific objectives:
1. To describe the changes in the family dynamics that occurred within families with
AD patients;
2. To identify the changes, joys and sorrows, that primary family caregivers face with
regards to the condition of the Alzheimer’s patient;
3. To explore the interventions that primary family caregivers do for specific
behavioral changes caused by Alzheimer’s disease; and
4. To explore the coping mechanisms and processes of the family to efficiently live
with members diagnosed with Alzheimer’s disease.
6
Significance of the Study
Family caregivers are also referred to as “invisible victims” of Alzheimer’s disease
because though the effect is not directly from the disease, it has an effect on all the family
memebers (Sterling, 2013). Caring for a patient undergoes a long duration process or may
also become a lifetime job mostly to those who will act as primary caregivers. As
mentioned earlier, caring for an Alzheimer’s patient may produce both feelings of guilt and
anger and these feelings may induce higher level of stress and lower health status
(American Senior Communities, 2014). It also results to higher risk of physical illness,
social isolation, emotional distress, and financial hardship to the caring party (Clarity
Pointe, 2015). These effects may escalate more if the family caregiver has a little
background about caregiving the tasks on dealing with patients with AD are not just
challenging but also subjecting them to feelings of inability and inadequacy to perform the
tasks (Family Caregiving Alliance, 2017).
The results of this study would be able to help family caregivers to better
understand their situation and promote of ways on how to hive care to their family members
with AD without sacrificing their own health. However, family caregivers still needed
emotional support from other family members and the family as a whole. This is why this
study also benefits the family as a social organization. When one family member
succumbed to the effects of Alzheimer’s disease, one must fill the role vacated by that
member and since majority of the member getting AD are the seniors citizens, it becomes
now a challenge to whichever is the next in position. In America, it is more common that
the wife becomes the primary caregiver (American Senior Communities, 2015). There are
changes in the roles more often than not that their family member is not immediately ready.
7
So, for instance, the wife would have to be the one to drive the kids or she would be the
one to repair petty house damages like the drainage and changing light bulbs. In return,
swapping of family roles is evident in the family setting. This is why Alzheimer’s disease
is also called as a “family disease” (Family Caregiving Alliance, 2017).
Since the research also showed the interactional dynamics of the family, results also
shows the interchanging roles of the members, communication within members, bond
within the family and other members of the household, and the changing relationship of
the family members. Not only will they provide care for the patient but also preserve the
order within and adapt to the changing dynamics of the family.
Types of Stigma
In addition, almost 1/4 of those diagnosed with Alzheimer’s hid their diagnosis and
almost half feels that they are excluded from everyday life. Sixty percent (60%) have
avoided and lost contact with their close friends. These are just evidences that there is
indeed a stigma attached to the diagnosis of Alzheimer’s. Moreover, there are also
evidences that even caregivers experience stigma because of the negative associations and
the avoidance and treatment of other people upon giving the information that they are
taking care of Alzheimer’s patients (Bele, 2017). It is said that the caregiver’s feelings of
shame, disgust, disappointment, an embarrassment are influenced significantly by the lay
public’s stigma. Both the caregivers and the patients experience a decline in forming close
relationships with people and that other people focus on their impairments rather than their
abilities thus they felt marginalized (Right at Home Inc., 2017).
8
In this regard, this study would enable its readers to gain understanding of the
situation not only of the patient but also the experiences of his or her family caregiver thus
lessening, if not ending, social stigma. It is said that social stigma prevents people from
seeking medical diagnosis and treatment, which in turn devalues the benefits of early
diagnosis and thus leads to a lack of support system (Purple elephant, 2015). Due to social
stigma, people loss a sense of self- esteem and feels a sense of social seclusion from friends,
neighbors, and from his or her family. But it is not their fault to have been afflicted with
such a disease (Scutti, 2014). As what one of the Alzheimer’s patient interviewee of Scutti
(2014) said, “I’m not stupid, I have a disease. That’s the difference.”
Lastly, the results of this study would benefit both the Alzheimer’s Disease
Association of the Philippines and the St. Luke’s Memory Care Center since this research
is in line with the goal of the organization to give better care for the family caregivers and
families who handle Alzheimer’s. Furthermore, this also benefits the little literature about
primary caregiver of Alzheimer’s disease patients considering the family situational
context in the Philippines.
Scope and Limitations
This study only focused on the experiences of primary family caregivers of patients
diagnosed with Alzheimer’s. The researcher only interviewed the primary family
caregivers of the AD patient. This explored the caregiving experience in consideration with
the household division of labor, roles and interactional dynamics among family members
and their patients.
It is also the concern of this study to know the changes in the roles, bond,
relationships, and communication of the family members since the diagnosis of the disease.
9
Furthermore, it would explore the first signs and symptoms of the disease, reactions of the
family members and of other people when informed of the patient’s condition, and the time
they allot to take care of the member with Alzheimer’s. Since the study is concerned with
the reaction of other people, it does not wholly focus on social stigma but more on the
understanding of the situation to alleviate this stigma.
The study also includes the actions that the family caregivers do to cope with such
unpredicted behaviors by the member with Alzheimer’s. It is necessary to know what kinds
of behaviors are shown during the early stages and during the middle stages of the disease
and what certain interventions work and what do not.
Since the study used qualitative data and gathered the results through in-depth
interviews of the purposively selected family members of the AD patient, there will be no
generalization to made from the results. There will be no comparison of how the cognitive
abilities of Alzheimer’s patients differ from the natural deterioration of cognitive abilities
brought about by senility.
Operational Definitions of Concepts
This section provides a guide on how the following concepts were used in the study.
Care for the Patient or Family Member with AD
This refers to the unpaid assistance given to the AD patient which enables the
caregivers to guide them through their everyday life like eating, bathing, putting on clothes
10
and shoes, etc. Another determinant is the hours spent with the AD patient during a day in
taking care of them.
Cognitive Impairment
Cognitive impairment refers to the inability to associate things correctly and
properly. It also refers to the inability to focus and the loss of attention when speaking to
or when dealing with important situations. Moreover, the time to process and respond to
stimuli is also considered when discussing cognitive impairment. It is also important to
note that in this study, the term is used to refer to those caused by Alzheimer’s. (Cognifit,
2017)
Memory Loss
Although memory loss is a part of cognitive disability, it becomes a distinct with
regards to the progression of Alzheimer’s. Moreover, there is also a specific part of the
brain that covers the formation and storage of memory (Alzheimer’s Association, 2017).
Memory loss in this study refers to the short-term and long-term memory loss. In the former
type, visual and auditory memory is considered. In addition, the inability to remember
important names, events, and information (e.g. address, age, school) is included.
Coping Mechanisms
This refers to the psychological and physical interventions done by the family and
family caregivers to give better care to the AD patient. This also scopes the spiritual and
structural ways on dealing with the disease, like for instance increase in the frequency of
going to the church, attending educational seminars regarding AD, etc.
11
Dynamics of the Family Interaction
In this section, changes in the division of labor in the family, relationships within
the family (i.e. spouse relationship, parent- child, sibling relationship, relationship with
relatives), roles of family members, and family activities, whether everyday activities or
occasional activities, which are affected due to the diagnosis of the disease.
Family Situational Context
Family Context is composed of three aspects: structural, dynamic, and capital. The
structural aspect is concerned with the household composition of the family. The family
dynamics involves the interaction between members and the capital refers to economic and
social capital of the family. (Uhlenberg & Mueller, 2003)
12
CHAPTER II
THEORETICAL FRAMEWORK
In explaining family caregiver experience of giving care to Alzheimer’s patients,
the Family Development Theory would be applicable. In this study, the unit of analysis is
on the individual, pertaining to the primary caregivers, and their relationships with other
family members. The Family Development theory explains changes experienced through
time in the life-cycle of the family which includes marrying, having children, deploying
children out of home, and having grandchildren and being left by the children for their own
family of procreation.
Rogers and White (1993) further explained that Family Development Theory
identified static concepts which would help dictate and explain family dynamics. Family
norms is the first concept that refers to the routine activities of the family. Role and position
of the family member is also considered for this identifies how each individual member
function. It is also important to note the stage of the family. This refers to current state of
the family. And the event wherein the stage of the family happened. This will emphasize
the determining factor or the transition between family stages.
Various studies have used the family development theory to explain the experiences
of families by identifying the life-cycle of the family or the state of the family. The study
of O'Brien (2005) used the individual as the main unit of analysis and used the theory as
one of his frameworks to explain the processes in in-group institutions like the family and
other environment of the individual. Hill (1986) used the theory to explain and determine
the life cycle stages of different types of single parents: divorced, widowed, and remarried.
13
On 1987, Jamieson also used the family development theory to explore on the experiences
of individuals on how they were being “brought-up” or socialized. All of the studies, used
the individuals as their unit of measurement which also tackles, not only the influence of
family but also the larger context of the environment of an individual.
In this study, Family Development Theory will be used to explain family caregiver
experiences, including challenges and coping mechanisms, in the context of the family
statics and dynamics. Family Development Theory is stage dependent (Rogers & White,
1993). With this study’s focus on the individual unit of analysis, understanding changes in
the family caregiver role, relationships, and response to normative demands will enable the
explanation of how the family caregiver give care to their members with Alzheimer’s.
14
CHAPTER III
REVIEW OF RELATED LITERATURE
This chapter presents literature and studies related to the topic. Exploring articles
and researches will enable this study to grasp what has already been done and what is
lacking in the social science research field.
Alzheimer’s and the Family
There are three reasons, according to the Alzheimer’s Association (2017), on why
relatives wanted their AD member to stay at home. First is the fact that they are home and
not in a hospital bed or at a care center. Second is that there are no issues of proximity
when visiting or wanting to care for them. Lastly, relatives feel that it is their obligation to
care for their AD members. The decision, however, for them to give care impacts the
family. In the study of Pucci & Belardinelli (2003), sixty percent (60%) of the relatives did
not want to inform the AD patient of his or her condition and only thirty-six percent (36
%) are those who informed their AD relatives that they have the disease. The concealment
of the diagnosis becomes a mechanism in which the AD patient would not feel depression,
hopelessness, worthlessness, and sadness.
Moreover, the concealment of the diagnosis of AD is also due to the stigma attached
to the illness as described by Werner & Goldstein (2010). The stigma is identified to be
caused by caregivers and from the lay public. However, there are still those who would not
care what other people think but only care for their loved ones. Seaman (2016) presented
narratives from families dealing with Alzheimer’s. One of his participants reported that
15
their relationship with the AD patient had drastically changed from enjoying the summer
with their grandchildren to persistent mood swings. The participant said that it was like
“the marriage is over”. Seaman analyzed that most of his participants reported to have their
spouses become child-like and that their bond as couples became their bond as parent-
child.
Alzheimer’s and the Aging Member
As the brain deteriorates, so does the function of whole body of the individual until
the patient is unable to walk, talk, and move, and until the only part of the body that is
functioning is the eyes and fingers, and toes (Mace, 2001). The behavior, memory, and the
motor functions of the individual becomes dysfunctional because AD slowly downgrades
the brain until it completely loses its role on the human body.
On the early stages of Alzheimer’s, Mace (2001) identified the changes in behavior
and in the memory. The AD patient easily gets upset because the tendency of caregivers is
to restrict them of doings tasks that may harm them, or because of the thought that the
patient is being helped. This is mainly caused by denial. In the early stages of Alzheimer’s
Disease, the patient may not be aware of or may forget that he/she has Alzheimer’s. Thus,
the individual not only gets upset but also become angry because of restriction and being
helped.
Wandering is also a prominent behavior among those with AD (Mace, 2001 &
Juergen & Blau, 2002). Patients may wander because they are confused of the routes they
took in which they are unable to return to where they came from. Forgetfulness when
outside the home results in wandering. For those who have AD, aimless wandering can
also be observed. They would go out of the house, roam around the neighborhood and be
16
lost. Some would suggest and advice that when the patient wants to roam outside, there
must be someone to go with him or her.
Later in the middle stages of the disease, the patients will be unable to manage
financial matters (Mace, 2001). The inability to manage money is due to forgetfulness on
where they place the money. The difficulty in making their signs that are needed in checks
and legal papers is also considered because motor functions of the brain will eventually be
affected. Slowly, the patient’s sense of taste and smell and the ability to walk or talk will
also deteriorate. Juergen & Blau (2002) added that incontinence can also be observes in the
middle and end stage of Alzheimer’s. Incontinence pertains to patients unknowingly
recognize their urge for bowel movements.
Alzheimer’s and Its Effect on the Individual Family Members
Individual family members especially the family caregivers are directly affected by
caring for the AD patient in terms of both physical and psychological burden (Maik, 2014;
Conde-Salla & Gare-Olmo, 2010; Alzheimer’s Association, 2017; Sterling, 2013). Maik
(2014) stated that the burden is caused by the unpaid part time to full time job of caring for
the member with AD. Physical burden is caused by full time caregiving considering the
proximity of the house of the patient to the family caregiver. Usually, it would take an hour
drive from the house of the caregiver to the member with AD. Meanwhile, psychological
burden is mostly associated to emotional stress that leads to anxiety and depression (Maik,
2014). Statistics shows that sixty-five percent (65%) of caregivers experience depression.
Hinton & Levkoff (1999) identified grief and loss as experienced by individual members.
They pointed that the experience varies from culture. It is further explained that an AD
17
patient sometimes experience a “loss of identity” thus making the individual members of
the family loss their member with AD.
Hinton & Levkoff (1999) also identified switching of dependency as an
experienced by an individual who care for the AD member. One case was that of a wife of
an AD patient. The wife said that before Alzheimer’s it is she who depended on her
husband but with the advent of AD, her husband depends on her in doing everyday tasks.
Changes in the Family due to Alzheimer’s Disease
Culture, ethnicity, and socioeconomic status are the main identifiers of acceptance
and changes in the family when it comes to Alzheimer’s Disease according to Hinton &
Levkoff (1999). Some families would say that signs and symptoms of AD is brought by
old age, depression and stress, or a traumatic experience. Some would say that it is a
manifestation of anger management issues. Hinton and Levkoff (1999) clearly stated that
culture has something to do with how families view the disease. In China, for instance,
stigma is prevalent because they would associate AD to “loss of identity” thus family
members are encouraged to disown members with AD for the reason that the AD patient
is not in his or herself anymore and that it is considered as mentally disordered. Even
though there are differences in views of AD, adjustments have to be made when the disease
intervenes in the social order of the family (Maik, 2014).
Adjustments are made concerning roles, bond and future plans, relationships,
organization, structure, and interactional patterns of the family (Brodarick, 2013). First is
the role of the family members. Because total care is needed by the patient to address their
needs, family members sacrifice their spare time to provide care to the AD member. It is
important to take note that even before the AD is acquired by their family member, each
18
of them has their own roles so as the AD patient. That is why someone has to take the role
of the AD patient and the additional role of taking care for the family member with the
disease. Some members experience role strain and conflict. It is also observed that there
are gender roles in caring for the patient (Maik, 2014). She further explained that females
are the first expected caregivers of the patients because of the feminine role of caring and
that females do not need to learn anymore the basics of caregiving unlike men.
Brodarick (2013) further explained that when organization and structure of the
family is affected by the disease, so will the changes in relationships occur. One case is
that a member will be more involved in decision making or caring so they will be closer to
the family than they were. However, there are instances that the disease makes other
members farther from the family because they do not have the power to make decisions for
the family. This then causes conflict in the family. That is why Brodarick (2013) also
observed that families with member/s with AD consult marriage and family therapists not
because of the disease but because of the conflict that is brought by the AD.
Lastly, when discussing interactional family dynamics, it is also important to
consider the bond of the family as a whole. AD also affects the bond and future plans of
the family because some of the vacant hours and days of the members are solely dedicated
to caregiving and attending seminars to foster better care for their family member.
Moreover, they still need to respond to the financial needs of the patient as well as the
treatments and therapies undergone to help alleviate the symptoms of the disease.
(Brodarick, 2013)
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Challenges Faced by Caregivers
Due to what was said earlier, there are also studies about the quality of life of the
family caregivers that are involved in the effects of the Alzheimer’s. They gathered their
data from 114 participants wherein they provided a distinction between those who have
vascular dementia and those who have Alzheimer’s disease. Their results reported that
Alzheimer’s patients showed verbally aggressive behavior than those who have vascular
dementia. Causes of such is presented by Alzheimer’s Association (2017),
The aggressive behaviour might be the person’s way of trying to achieve

what they need. It may be a sign of a need that isn’t being met or an attempt
to communicate it.
Yet, those who care for vascular dementia patients have lower quality of life than those
who care for Alzheimer’s patients (Kuo & Huang, 2014). Still, quality of life of caregivers
of both vascular dementia and Alzheimer’s disease were low. What is significant to note
in the findings is that as the Alzheimer’s progress, caregivers’ physical quality of life
lowers but have better mental quality of life. Their explanation to such phenomenon is that
caregivers were already prepared and satisfied with the result of their care.
Another explanation to the low quality of life of the caregivers of Alzheimer’s
patients is presented by Haro & Bruno (2014). In their study, the burden of caring for
Alzheimer’s patients was taken into account. After the analysis of subjective caregiver
burden scores, supervision time, and patient functioning of 1497 participants, they
concluded that better patient functioning is associated with less caregiver burden and less
supervision time.
In order for families to give better care to the patient with Alzheimer’s, Somme &
Gauttier (2013) stated that education about caregiving is essential when taking care of a
20
patient with Alzheimer’s. The difficulties faced by those who care for Alzheimer’s patients
was mostly due to the lack of education which also adds to the burden of caregiving. This
applies not only on caregivers but also to the general practitioners of the field of
Alzheimer’s disease.
Perceptions and Attitudes of the Caregivers on AD Caregiving
A study of Rawlins & McGrowder (2015) compared the attitudes and knowledge
of pre-healthcare and non-medical students about patients with Alzheimer’s disease. They
used a cross-sectional study and distributed questionnaires to a total of 691 students, 369
of which are the pre-healthcare students and 322 are non-medical students. Results show
that only less than half of those who answered the survey have enough knowledge about
Alzheimer’s disease. And of that half, majority is pre-healthcare students. It is also the pre-
healthcare students that have a more positive attitude about Alzheimer’s disease. It is
believed that pre-healthcare students resulted on a more positive attitude about the disease
due to the knowledge, understanding, and exposure they already have about Alzheimer’s
disease. (Rawlins & McGrowder, 2015)
The relation of education of the caregiver and the quality of life of the patient was
also tackled by Conde-Sala & Garre-Olmo (2010) in their study of the quality of life of
patients with Alzheimer’s given either an adult child caregiver or spouse caregiver. They
interviewed 251 patients and their caregivers. 112 of those are cared by spouse caregivers
while 139 were cared by adult child caregivers. Their results showed that it is those patients
with spouse caregivers who have a positive perception of their quality of life. An
explanation of this phenomenon is that the spouse is the closest family member of the
21
patient, thus he or she carry less burden with regards to caring for their family member
with Alzheimer’s. Moreover, they also acquire higher educational attainment than the adult
child caregivers which means that they already have the knowledge and understanding
about Alzheimer’s disease and caring for those with Alzheimer’s (Conde-Sala & Garre-
Olmo). Their results are consistent with that of Rawlins & McGrowder wherein educational
attainment, determines the knowledge and attitude of individuals on patients with
Alzheimer’s.
In the absence of the spouse to give care to the AD patient, it was the daughters
who would initiate caregiving to their parents (Alzheimer’s Association, 2017). Statistics
show that one-third of those who give unpaid care are daughters of the patients. A narrative
by Sterling (2013) was presented and the challenges she faced while taking care of her AD
parent. Not only does she gave up the advanced degree due to the responsibility to give
financial support to her parents, she also suffered from stress-related issues.
Needs and Treatments of the Disease
Attempts for treating Alzheimer’s disease were prevalent using pharmacological or
non-pharmacological approach (Alzheimer’s Association, 2017). Some of the
pharmacological approaches were the introduction of Souvenaid (Ritchie & Bajwa, 2014)
and rivastigmine (Kolykhalov & Rassadina, 2010). The effects of the use of therapies as
non-pharmacological approach to treating Alzheimer’s is also the same as the effects of
drugs (Olazaran & Reisberg, 2010). These types of interventions and drugs were used to
battle memory loss and to control behavioral disorders but never to treat the disease.
22
It is said that as the disease progresses, the cost becomes larger (Gillespie &
Cullinan, 2014). Their study just provided proof for this claim wherein they obtained their
data from the Enhancing Care in Alzheimer’s Disease (ECAD). They gathered the record
of patient function that is measured by the Disability Assessment for Dementia (DAD)
scale and the record for patient dependence through the Dependence Scale (DS). Both
variables are used to describe the increasing costs of informal and formal care received by
the patient. They computed for the longitudinal costs of caring for Alzheimer’s patients
over the course of two years. Results show that over the six months, there is already a
statistically significant increase in the costs of caring for the patients and the cost will more
likely to increase when the duration of care persists. Moreover, they said that the increase
of dependence of the patients together with the decrease in patient function resulted to
increase in formal and informal care cost of caring for the patient with Alzheimer’s.
(Gillespie & Cullinan, 2014)
As the cost of care increase with the duration of the care, there is a question to what
the needs of the Alzheimer’s patients are. Wang & Pai (2015) developed the hierarchy of
needs of the Alzheimer’s patients using Maslow’s hierarchy of needs. They obtained their
data through interviews with 65 pairs of caregiver-patient and with the use of content
analysis to give meaning to their data. Results showed that the first need of the patients is
the desire for comfort not only physically but also psychologically. It is evident that they
show disruptive behavior when their goals are not met and their behavior became the
communicators with their family caregivers in which they understand what the patient
needs. Second is that of the desire for security, financially most specially. Third is the sense
of belongingness. It is said that Alzheimer’s patients needs to feel love and affection from
23
their family members and caregivers. Moreover, the patients also need to feel belonged in
a certain group may it be religious or social. Some patients would worry more if they are
visited by someone than their eating habits and schedule. Lastly, the need for self-control
is also included. Some patients develop a hoarding behavior of their personal belongings
which means that they wanted control of their self which gives them meaning and a sense
of self-worth. This thus builds their self-esteem. (Wang & Pai, 2015)
Much of the studies stated above are centered on improving the lives of the patients
and caregivers, including family caregivers. However, this study is concerned with the
dynamics of the family brought about by the effects of Alzheimer’s to the patient and the
family members. This becomes important because, as stated earlier, the disease not only
affects the patient but also the patient’s family. Moreover that Alzheimer’s disease is not a
disease of an individual but is considered as a “family disease” (Family Caregiving
Alliance, 2017).
Coping Mechanisms and Interventions of Families
One of the coping mechanisms that resulted from the study of Garity in Meyer
(2017), was resilience and giving time for extended family members because it is through
them that they gain social support which in turn improves the quality of care given by
family caregivers. Seaman (2016) also stated that when AD patients forgot significant and
memorable events, his participant never bother to repeat the story and further tell their
plans that they made together but the ending was always to the present situation where they
did not expect that AD would come their way.
24
One of the interventions that most caregivers would employ is Infantilization. The
term is used to refer to the instance where an individual is treating the person giving care
to as a child. This happens in caring for AD patients (Seaman, 2017). However, the use of
this method may harm the patient. This serves as a “self-fulfilling prophecy of unlearning,
what has been termed ‘learned disability’”. The continuous treatment of an AD patient as
a child would further impair their abilities and would adapt to the routine that their
caregivers always say to appraise or scold them. Indeed, one of Seaman’s AD participant
would confuse his wife as his mother.
While some families continue physical and psychological caring for the AD
members, some would delve into the spirituality as their way of coping with the disease,
narratives from Bell and Toxel from Beuscher (2007) would say that “meeting an
individual’s spiritual needs may be the only way to have a meaningful connection with that
individual as cognition declines”. However, some would also claim that in coping with
AD spirituality need not to be introduced specially to the patients, especially if they are not
practicing their religion in the first place. The latter result was the same with the results of
a quantitative study done by Campbell (2001). He showed that there is no positive
relationship or at least no significant relationship between spirituality and social support,
cognitive restructuring, low depression, and caregiver burden.
With the literatures available, there are studies about the difficulties and quality of
life of patients and caregivers including family caregivers, costs of caregiving, attempts to
treat AD, effects to the family and family caregivers, other forms of coping mechanisms,
and perceptions about the disease. However, lack of studies about the dynamics of families
25
specifically is observed. This is what this study is about: how the family is affected by the
disease.
26
CHAPTER IV
RESEARCH METHODOLOGY
This chapter discusses what the researcher did in order to answer the research
objectives. It specifically pertains to the research design, locale, selection of participants,
research instrument, and data analysis of this research.
Research Design
The research used a qualitative approach since the focus is on the experiences of
family caregivers considering the situational family context. Data were gathered by
conducting in-depth interviews. The study used a qualitative approach because the goal is
to capture the experiences of the family members which cannot be fully defined and
explained by data presented by numbers and statistical analyses. Moreover, as said by
Atieno ( 2009) a strength of using a qualitative approach is that it encapsulate the meaning
and essence of lives of the participants including the experiences of the subjects and the
processes of these experiences.
Experiences vary from case to case and in this study a case of a certain family
differs from the case of another family. The topic is sensitive so the focus is on experiences
of family members depicting the changes in the family.
Locale of the Study
The researcher initially sought the help of the Alzheimer’s Disease Association of
the Philippines. However, the secretary of the president of the organization referred the
27
Memory Care Center of the St. Luke’s Medical Center, Quezon City since the department
is also conducting studies regarding aging and caregiving.
The Memory Care Center is located at basement of the St. Luke’s Medical Center
in Quezon City. Concerning the accessibility of the hospital to families living with
Alzheimer’s, the researcher has decided to focus on families living in the vicinity of
National Capital Region. In this way, it was quite convenient for the primary family
caregivers when they were scheduled for interview.
Research Participants
With the help of the Memory Care Center, the researcher had interviewed five
primary family caregivers with the criteria that they should be aged 35 and up, should be
living with the AD patient, should be living in the vicinity of Quezon City, and should have
a clinically diagnosed AD family member. A letter was passed and evaluated by the head
nurse of the department then they were the ones who searched for possible participants
who qualified on the criteria set by the researcher.
Key informant interviews were also conducted. The study managed to gather two
key informants: one of the key informants is a clinical psychologist who handles patients
with Alzheimer’s and is also conducting family conferences while the next is a nurse at the
St. Luke’s Memory Care Center who conducts seminars, conferences, and conventions for
family caregivers for almost 13 years. Data gathered from both informants were used to
support and further elaborate recurring patterns of answers from the family caregivers.
28
Research Instruments
A letter was given to the organization for a permission to conduct interviews with
some of their patients. Semi-structured in-depth face-to-face interviews are used to obtain
data. An interview guide was prepared by the researcher before the interview. The
participants are also provided informed consents which permits the researcher to record the
interview for transcriptions.
Data Collection Process
The interview started from the first until the third week of April 2018 in the desired
place of the participant. It is important that the place is conducive for interviews- quiet,
secluded, and private. When the participant agreed to be interviewed and had signed the
consent form provided by the researcher, the interview will then proceed.
Data Analysis
This research is a case study concerning the primary family caregiver experiences.
It was better analyzed the case if a thematic analysis was done. Using thematic analysis
enabled this study to “identify, analyze, and report patterns” that can be seen in the data
collected (Braun and Clarke in Jugder, 2016). Concerning the data gathering method which
is in-depth interviews, there are various insights that was obtained. Thus, patterns through
themes is essential in this study. Moreover, these themes referred to the patterned ideas
elicited from various respondents. This allowed the researcher to “describe, compare, and
relate” these ideas to give a better explanation for each research objective. Main themes
were allotted for the struggles and difficulties, experiences, dynamics, interventions, and
29
coping mechanisms done by the families. Subthemes were created to explain further what
families and family caregivers underwent within those main themes.
30
CHAPTER V
RESULTS AND DISCUSSION
This chapter presents the findings of the study from five participants and two key
informants with an elaborate explanation in relation to the theoretical framework and the
related literature discussed earlier.
A. The Five Cases
The Case of Buenafe
Buenafe is a single 36-year-old daughter of Felicisima. A registered nurse who is
currently at sales, Buenafe takes care of her mom together with her brother and two cousins
whom she treats as their own siblings.
At 2014, she decided to stay in the Philippines from abroad to help provide care for
her AD- inflicted mother. Since then she became the primary family caregiver together
with her brother. Buenafe and her brother would guide Felicisima into doing the activities
of everyday living like taking a bath, eating, and changing clothes.
The Diagnosis
At the age of 76, Felicisima is now clinically diagnosed with Alzheimer’s for eleven
years. Her Alzheimer’s is not acquired through genetics but through vascular dementia
caused by a stroke. One way of having AD is through strokes which inflicts memory loss
31
and disorientation causing vascular dementia. If this condition is not treated immediately,
it may lead to Alzheimer’s disease which is not irreversible.
When Buenafe received a call from her brother that Felicisima “passed out”, she
immediately attended to the needs of her mother who, at that time, mistaken her for a nurse
working on that hospital. When checked by the doctor, the scans and tests show that
Felicisima is normal and had no other complications however, Buenafe as a nurse knew
that something was wrong so they decided to opt on a second opinion on the St. Luke’s
Hospital in Quezon City. True enough, they have discovered that Felicisima have
Alzheimer’s. The moment she knew of the diagnosis of the disease, she was astonished
because she believed in the rumors that when one plays mah jong, one is less likely to
acquire Alzheimer’s. She said during the interview,
Nagulat lang din kasi ang sabi kasi nila “if you play mah jong (laughs),
ma-eexercise yung neurons mo so hindi ka parang less yung possibility na
magka-Alzheimer’s ka”. Eh si mama, nagmamah jong yun. So sabi namin,
hindi rin pala.
Today, Felicisima is stuck at 2007. When asked of her age, she would answer, “ah,
1942 ako eh, 2007 -1942, sixty plus”. There is a calendar in their house wherein Buenafe
identified it as an exercise for Felicisima to correct the date every single but Felicisima
forgets to do it. Even in the news, when the death of the late Corazon Aquino is featured
and showed, she would react as if it was her first time to heard of the news.
Changes in the Family

Buenafe is still grounded in the notion that Filipinos culturally take care of their
aging member that is why amidst the challenges, she still gives care to her mother. She
32
identified that the family dynamics that they have became more positive because of the
disease.
Mas naging closer. Mas naging close ako sa mother ko kasi naiintindihan
ko siya. Since may Alzheimer’s si mother, mas open yung comminucation
kung ano yung gagawin.
It can also be seen that in their house, arrangements were done. They removed
their wall clock because Felicisima keeps on basing her meals on the time. For example,
it is only 1 PM and she already had lunch, she would ask for a meal and would reason
that it is already 1 PM.
The dilemma of the family in the time of the interview is that Buenafe is about to
go abroad and what will be left with Felicisima is only her brother who would at times be
in conflict with their mother because of, what Buenafe identified, the lack of medicinal
background.
Personal Experience
It is common for AD patients to be forgetful. In this case of Buenafe’s mother, there
is an instance where she forgot that she is cooking rice and thus overcooked the meal.
Financial matters are also taken into consideration when handling Felicisima. When
Buenafe would give her mother money in whatever amount, Felicisima would forgot where
she put it. Thus, it will be forgotten and the money will be lost. The fear of Buenafe is when
incontinence becomes more prevalent and when Felicisima becomes unaware of herself
urinating or defecating.
33
With regards to financial matters of caring for Felicisima, Buenafe identified the
expensiveness of the disease, she said,
Financial kasi mahal rin kasi yung gamut, ayun. Dati yung Aricept niya
5,000 per 8 tablets lang siya. So parang 30 tablets [tapos] once a day.”
However, Buenafe attends to conventions about Alzheimer’s disease and
conferences of family caregivers in which she is able to obtain and get free sample
medicines which attends to the signs and symptoms of the disease. Whether physical or
financial problems, Buenafe have to make adjustments.
Adjustments are deemed by Buenafe to be important. She cannot leave the house.
There is a time where Buenafe attended a school reunion and it was only 7 or 8 PM when
Felicisima became worried and asked where Buenafe is. Whatever early the night is for the
occasion, Buenafe did not have a choice but to go home for Felicisima to stop worrying.
Case of Sandra
Sandra is a mother of three children. With the dilemma of partaking a role of a
mother and a daughter to her father who have Alzheimer’s, she, at this point in time,
chooses to be a responsible daughter to take care of her father. She works as a Human
Resource who visits home to check on her father. Her father is assisted by two maids. She
believed her father to have a severe case of Alzheimer’s with no motivation to do everyday
tasks anymore. The family is set to have him checked by a psychologist to confirm if a
depression is present.
34
The Diagnosis
The parking ticket is what made Sandra and her family decided to have her father
diagnosed for the presence of Alzheimer’s disease. They searched and searched for the
parking ticket only to figure that it was in her father’s pocket. Just like in the case of
Buenafe’s mother, it is the forgetfulness that is the first sign of having Alzheimer’s. In a
span of one hour, her father would ask the same questions almost four times. These they
knew is not normal. They have him checked at the Cardinal Hospital which is near their
home.
Now, from a very active and busy person, her father is idle. He cannot go out of the
house because he cannot walk anymore due to a knee problem. Sandra and her family fear
that their former-military father may be suffering from depression. The loss of his father’s
authority, ability to handle finances, and total loss of roles made his father feel useless thus
slowly weakening his will to live.
I like na lahat kami nagcocontribute. We are helping mom to alleviate the

stress that she is feeding
The whole family contributes to giving and providing care for Sandra’s father. As
said by Sandra, “Its payback time”. She would remember the instance where her father
would take care of her grandmother and father. Now, it is the time that her father is to be
taken cared of. This is a familial experience because all the family members cooperate to
give a better and happy life for her father.
35
Personal Experience
Sandra identified to have a better relationship with her father. Sandra find it difficult
to witness her father struggling because of the disease and the co-morbidity. Her father
seems to fight the disease to make him look and appear that he do not have a disease. The
denial of which of her father forced and motivated Sandra to never fail to show her love
for her father. As she said,
Parang, gusto ko iparamdam na mahal ko siya, hinahalikan ko siya nang

husto kapag hinuhug ko siya. It’s the time for me to tell him that I love him
so much kasi natatakot kami na baka mamaya kung anong mangyari
The Case of Marlene
Marlene, together with her siblings and their children, live with her AD-inflicted
mother. She works at St. Luke’s Medical Center. After work, she goes home to her mother
and spend time with her during dinner, eating what her mother had prepared. At the age of
84, Marlene’s mother is diagnosed with mild Alzheimer’s disease. Marlene and her family
are doing their best to learn about the disease to eventually cope and live with it better.
The Diagnosis
It was only in the late last year that Marlene’s mother is diagnosed with Alzheimer’s
Kasi gumising nalang siya ng… ganun ganun (imitates)... bumababa siya
ng hagdan as in umeekis na siya. Yung gia niya ay talaga nawala. Sabi ko
“nay, bat ganyan ka”. Tapos nung edi dinala namin dito sa hospital kasi
as in talagang kakaiba sa usual na ginagawa niya.
36
Marlene’s mother is now at the recovery stage and is still getting to adjusting to the
nature that she has Alzheimer’s. Although, the roles of Marlene’s mother as a lola is still
prevalent in the household
The changes in the role of Marlene’s mother brought forth harmony in the house.
Marlene said that her mother does not show aggressive behaviors and is calmer than before.
Marlene also said that if that is brought by Alzheimer’s then she is happy to have her
mother diagnose with the disease.
Personal Experience
Marlene provides the needs and wants of her mother. Since her mother wanted to
collect dolls from Japan and bags, she buys her those stuffs. Little did Marlene knew that
this may be a manifestation of a hoarding behavior. However, it is one of the interventions
of Marlene when it comes to the behavior of her mother.
The Case of Jacqui
Jacqui is an architect who lives with her sister and mother. Jacqui and her sister are
both single and are fully taking care of their 85-year-old mother. Her mother has an
Alzheimer’s for 26 years already and have been bedridden for nine years. Jacqui’s mother
is on the end stage of Alzheimer’s disease which denotes that the only functioning part of
her body is the toes, fingers, and eyes. Even though the situation, Jacqui is still grateful for
everyday that her mother would wake up.
37
The Diagnosis
Jacqui’s mother is believed to be one of the first 100 patients of the Memory Care
of St. Luke’s. It is Jacqui’s uncle that advised them to have her mother checked for
Alzheimer’s since Jacqui’s grandmother also suffered from dementia. True enough, it is
in their genetic composition that Alzheimer’s is prominent in their blood. Through the
diagnosis of the disease, Jacqui and her family were enlightened with what the disease is
about and how to overcome challenges in caregiving.
This is why the family dynamics of Jacqui’s case does not show any adverse effects.
In fact, they educate families and conduct family caregiver orientations because they are
the ones who experienced living with the disease from the mild to moderate to severe until
the end stage. The family dynamics of Jacqui became so positive in which it is almost
perfect. All of the members of the family are willing to, not sacrifice, but spend time with
Jacqui’s mother even the grandchildren. It can be seen that they care not out of obligation
but because of willingness.
Personal Experience
Jacqui and her sister have devised and formulated a unique way on coping and
efficiently living with the Alzheimer’s disease. They developed A-P-P-L-A-U-D.
Acceptance. Prayer. Patience. Love. Anticipation. Understanding. Devotion. Whenever
they get tired to caring for their mother, they would only keep in mind APPLAUD then
they could continue on giving care to their mother in an instant.
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The Case of Luisa
Luisa is 53 years old who, together with her two children and twin sister and her
nieces, lives with her mother whom they believed to be on the severe stage of Alzheimer’s.
She and her family are having problems with the attitude of her mother. Personally, she
finds it hard to take care of her mother considering the verbal and physical aggressive
behavior that the latter exhibits. However, she tries to care for her although the case.
The Diagnosis
It scan be observed that Luisa did not want to have her mother diagnosed since she
viewed the signs and symptoms as a normal of aging. But eventually they diagnosed her
mother and found that she is suffering from AD already. However, whenever there is a
check-up, Luisa would always compare her mother to those others who have AD wherein
some sings, some are just quiet, and some are kind. Yet there she is caring for her mother
who would physically and verbally abuse her.
Luisa’s family is one of the isolated cases where it is really adversely affected. All
the members of the household will experience being said foul words and aggressive
behaviors. This is an identified reason of Luisa where they could not stand the patient
eating and sleeping in just one room. What the family can do is to be patient and to
understand the situation of Luisa’s mother.
39
Personal Experience
But in whatever understanding and patient, they do, they still find it hard to live
with Luisa’s mother that is why when Luisa’s brother would take the Ap patient to the
province, they would celebrate and claim that the day is an “Independence Day”. In Luisa,
one can find that the family is really struggling in providing care for their family member
with Alzheimer’s. Luisa would come to work with scratches on her arm cause by the recent
quarrel between her and her mother. But not only do Luisa experience physical
aggressiveness, but also verbal abuse from her own mother telling her of “palamunin,
magnanakaw”. This really hurt Luisa and made her cry during the interview.
Summary of Characteristics of the Research Participants
Table 1. Summary of the Sociodemographic Profile of the Research Participants

PARTICIPANT AGE SEX MARITAL RELATIONSHIP TO
STATUS THE PATIENT
Buenafe 37 Female Single Mother
Sandra 54 Female Married Father
Marlene 55 Female Married Mother
Jacqui 48 Female Sigle Mother
Luisa 53 Female Married Mother
It can be observed that all of the interviewed primary family caregivers are female
whose age ranged from 37-55 (See Table 1). Two of the participants are single and the
rest are married. For the members who have Alzheimer’s, it is the mothers who were
diagnosed with the disease. Only Sandra has her father diagnosed with Alzheimer’s.
40
Table 2. Summary of the Characteristics of the AD Patients
CASE NO. AGE YEARS STAGE OF THE AD
WITH AD
1 76 11 Moderate
2 84 1 Not known
3 85 1 Mild
4 85 26 End
5 81 4 Severe
Table 2. showed that the earliest to have been clinically diagnosed with Alzheimer’s
disease is Jacqui’s mother wherein she is living with AD for 26 years. The latest is of the
mother of Marlene having been diagnosed just late last year. The ages of the patients ranged
from 76-85. There is also a case where the stage of the disease is unknown because of the
inconsistent check-up of the families.
B. The Two Key Informants
Dr. Soriano
She is a psychologist at the St. Luke’s Medical Hospital Quezon City who is
currently doing her masteral thesis with a focus on depression and gerontology at the De
La Salle University. With an interest on the aging individual, she also handles Alzheimer’s
patients and conducts family conferences and consultations.
Ma’am Peachy
Ma’am Peachy is a nurse at the Memory Care Center of St. Luke’s Medical Center.
She is also an allied member of the Alzheimer’s Disease Association of the Philippines,
41
Dementia Society of the Philippines, and Gerontology Nurses of the Philippines. With 13
years of experience with Alzheimer’s, she conducts orientations for caregiver, whether paid
or family.
42
ANALYSIS
Kapag mahina na ang tuhod ko, pagtiyagaan mo sana

akong
tulungang tumayo, katulad ng pag-aalalay ko sa iyo
noong nag-aaral ka pa lamang lumakad
Pagpasensyahan mo sana ako kung ako man ay
nagiging makulit at paulit-ulit na parang sirang plaka.
Pagpasensyahan mo sana kung madalas, ako'y masungit,
Dala na marahil ito ng katandaan

Pagpasensyahan mo na sana kung ako man ay maihi o
madumi sa higaan,
Pagtyagaan mo sana akong alagaan sa mga huling sandali
ng aking buhay.
Tutal hindi na naman ako magtatagal.
This is the written demands of the elderlies seeking the help of family caregivers.
The Filipinos honor the importance of giving care to the aging members. From the results
of the study, five themes were generated and to be presented with a discussion.
Theme I: The Family is Still a Functional Entity
In the advent of the disease, the dynamic dimension of the family context is mostly
affected particularly on the roles and the relationship within the family. Roles in the family
can be grouped into two: roles taken by members and roles taken by the AD patient.
With regard to the roles taken by family members, it is evident that there is an
occupying of vacated roles of the AD patient. In the case of Sandra’s father, managing of
rents and payments is handled by her mother. However, they are having trouble because
when her father was still functional, he did not want anyone to meddle with the business.
43
Today, they find it difficult to learn and adapt to the routine that they are the ones who are
now in charge of collecting rents. Brodarick (2013) explains this as a manifestation why
role strain and conflict are experienced by family caregivers. Not only do Sandra and her
mom would perform their tasks as mother and daughter and as a wife, respectively, they
would also take on the role vacated by Sandra’s father. This can also serve as an additional
role taken by family caregivers aside from taking care of the AD patient.
There are also cases wherein additional roles are being handed to primary
caregivers. An instance of such is that of Buenafe’s, she always guides her mother in doing
daily activities. Guiding her mother becomes additional role and responsibility of Buenafe.
With respect to the study’s theoretical framework, the norms of family caregivers change.
The stage where Buenafe’s family can be attributed to total guidance of her mother brought
by Alzheimer’s. Norms of Buenafe do not only change but also increase as the disease
progress and as the patients becomes more dysfunctional. Normative demands of the
patient increase which increase the caregiver’s change in norms. This is crucial for if not
addressed properly, may lead to caregiver burden and conflict within oneself and with other
family members.
There are also reported cases of switching of roles. A case was that of Sandra and
Jacqui where they emphasized that the role between parent and child completely switched
which is consistent with that of Brodarick (2013) wherein it was said that roles within the
family is affected by the disease which then follows relationship between family members.
Parang magfa-flashback lahat ng ginawa niyang maganda sa iyo… yung
time na bata ka pa. Ngayon, ako naman. Ako ang mag-aalaga kay Daddy.
44
Switched na talaga iyong roles. As early as [mild] stage,… siya na iyong
pinapaliguan, siya na iyong pinapakain. Exact reversal. Iyong nakikita mo
sa Facebook iyong lumalabas na, “Kapag ako’y tumanda, sana ‘wag mo
akong [pagagalitan] dahil noong bata ka [inintindi] kita… ‘wag mo akong
pagagalitan kung ako’y napa-ihi dahil noong bata ka, pinipunasan kita,
pinapalitan… Kung hindi kita narinig kaagad, ‘wag mo akong sisigawan
kasi baka maaaring hindi kita naiiintindihan”. That is true. That is true.
Sandra and Jacqui said the above statements during the interview. These show the
switching of dependency that Hinton and Levkoff (1999) identified that they found in their
study. However, although the role between parent-child is switched, Ma’am Peachy and
Dr. Soriano emphasized that the family caregiver must not treat the patient as a child
because it will worsen the disease and make the functionalities of the patient deteriorate
faster. There is a common notion between the caregivers and the key informants that they
use the quote “use it or lose it”. That is why in line with what was stated earlier, guidance
is always needed and this serves as an additional role.
With the changing roles of the family member, there are also roles that are taken by
the AD patient. Even though some lost their role as having authority within the household,
or power over making decisions, or hold of own or family’s finances, some AD patients do
not lose their roles. Marlene’s mother still recognizes her role as ‘lola’ even though she is
drawn to dancing and playing with her grandchildren. She still receives respect from other
members of the family. Sandra’s father and Buenafe’s mother can still decide for
themselves. Given the limitation that they cannot decide for the family, it does not change
45
the fact that they can still function, not as the authoritarian but, as an individual family
member.
Roles of the AD patient can also be replaced adversely or positively. Jacqui’s
mother, on one hand, is labeled as an ‘angel’ by her grandchildren. The grandchildren
would whisper prayers and intentions to their lola and suddenly those intentions will be
granted. Insert the quote.
Yung isang bata, mag-eexam, tapos binulungan niya pala ng prayer si lola.
“Lola, [i]pag-pray mo naman ako…”. Aba feeling niya natulungan siya ni
lola so kumalat ang tsismis. Mga bata ngayon, kapag mag-eexam sila lalo
na kapag board exam, [dadaan] pa (sa bahay)
Moreover, they use logic as comparison wherein their lola is bedridden and does
not do anything anymore thus, she cannot sin. Therefore, the grandchildren would say
“Lola is an angel”. Luisa’s mother, on the other hand, depicted the complete opposite.
Luisa’s children would say “She’s (lola) a monster!”. Luisa added that she cannot blame
the children. Her children had suffered verbal aggressiveness from her mother calling them
“magnanakaw… palamunin”. Not only hurtful words but Luisa’s mother would also use
foul language against everyone in the house. Ma’am Peachy further explained that as the
disease progresses and advance its stage, behaviors, such as aggressive behaviors, aberrant
behavior, and irritability, become more prevalent. According to Maik (2014) and to the key
informants, this adds to caregiver burden.
When it comes to relationship in the family, there are three recurring patterns:
cooperation through willingness, communication through consultations, and planning
46
through anticipation. First, cooperation through willingness. An example of this is that of
Jacqui. She said that cooperation within their family emerged not because of obligation but
because of willingness.
Kaming dalawa ng sister ko ang nagsusupport, tapos kung anong mabigay
nila. No obligation. Like iyong isa kong sister, working naman siya, sabi
niya she will support the monthly diapers… Tapos iyong mga nasa States,
kapag nagpapadala, freezer bags, gloves, wipes, osterizer… mahal dito
[kasi]
This can be seen in how they handle finances. She added that there are no
expectations regarding financial support. She and her sister are the ones who fully support
their mother. Without any demands, their siblings from America would volunteer a
replacement of osterizer, for example, or latex gloves, or diapers. The point is that even
though they have siblings abroad, they do not demand that those who are abroad are in
charge of expenses, the whole family are involved and cooperation is not an obligation.
Ma’am Peachy added that cooperation in the family may not be that of the physical aspect
but more on the expenses. Furthermore, she explained that family conflicts may start if
members do not cooperate in which the burden will only be carried by the primary family
caregiver.
Second, there has been frequent and open family communications because of
family consultations. In the case of Jacqui, Buenafe, and Luisa, family communications
become more open for the betterment of the AD patients. Jacqui’s case would entail having
a Facebook group chat wherein they would discuss decisions to be made, updates of
operations and check-ups of their mother, and family support.
47
Meron kaming group chat, post yan (updates) iyan dyan. Iaannounce
namin, halimbawa, she will get a peg replacement, she will be admitted to
St. Luke’s at this day. We inform everyone… If may kailangang pagbotohan,
it will be open for discussion.
Jeurgen and Blau (2002) suggests that family consultations and family conferences
resolve conflicts and misunderstandings in the decision-making processes of the family for
the AD patients and this can be seen in the case of Jacqui’s case.
Lastly, planning ahead of activities of the family involving the AD patient and
activities of the primary caregiver is done due to anticipation. Family activities involving
the patient is planned differently. What Luisa would plan is how to make her mother go
out of bed, take a bath, and go out of the house. Luisa’s mother does literally nothing. She
would wake up, sit on her rocking chair, walk around the house, eat, and repeat. There was
a time when they are set to go to Baguio for a trip but they had trouble making Luisa’s
mother go out of bed. They had to be on time before the bus leaves because Luisa have
already paid for their tickets. But then Luisa’s mother is still on the bed and the taxi is
waiting for them outside their house. In relation to this situation, family caregivers learn to
anticipate problems and worst-case scenarios so they tend to plan ahead. Buenafe, for
example, will plan her weekend if there are Alzheimer’s conferences or seminars that she
wanted to attend to.
With the interview with a psychologist, she said that with the cases she is handling,
it is clinically reported that the relationship within the family is adversely reported. This is
in contrast with what resulted from the data gathered. An explanation for this is because of
culture that even though there is a polarity between being adversely affected or not, it is in
48
the culture of the Filipinos to provide care for their family members (Hinton and Levkoff,
1999). In addition, the key informants also identified the culture of being family-oriented
as a determining factor on why Filipino families continue to take care of the AD- inflicted
member amidst the adverse effect on the individual and on the family.
Theme II: Living with Alzheimer’s is (Not) That Bad at All
Living with Alzheimer’s is also living with fear. Fear that the situation may worsen.
As the disease progress, eventually, what Buenafe fears is that her mother does not want to
eat anymore, or that her mother would develop incontinence. This is problematic since
Alzheimer’s is irreversible, there will come a time that certain abilities like eating or bowel
movements will deteriorate but still it is feared by family caregivers when in fact they have
to anticipate such forthcomings.
Moreover, fear is also developed because of the other complications of the AD
patients. All of the participants have identified that the AD patients have other
complications like diabetes and hypertension. Of all the participants, it was Sandra who
was much worried. Sandra’s father may have been experiencing depression because of
what happened. Before, he was a busy military person, but now he is idle. This is what
Sandra and her family believes to be a reason why her father “loses his motivation to live”.
Although not yet diagnose with depression, she fears that the abilities of her dad deteriorate
because of the co-morbidity. Hinton and Levfokk (1999) explained that family caregivers
may experience grief and loss due to the situation of their patients. This is true for this
result since Sandra may feel that she is slowly losing her father. That the father she once
known is now idle and not his “normal self anymore”
49
Living with Alzheimer’s is also living with a limited amount of time. Jacqui would
always say “Every day is a bonus”. Just imagine that Jacqui’s mother had stroke and
because of that been bedridden. The doctors told them that her mother would not last long.
But that was nine years ago. That is why Jacqui is grateful for every day. Her mother is
lucky to have live bedridden for 9 years. Sandra would attest that one will never know
exactly when the deterioration will happen. In a snap of a finger, Sandra’s father finds it
difficult to use a spoon and fork, Jacqui’s mother does not know how to sign, and Luisa’s
mother will get angry over nothing. And that is not normal wherein family caregivers think
that it seems that their parents are running out of time.
Time is an important element when dealing with Alzheimer’s. There are three
identified reasons why. First is that it is the time to tell the parents how much their children
and loved ones love them. One will never know how much time AD patients have left.
Sandra, in tears, said during the interview:
It’s the time for me to tell him that I love him so much kasi natatakot kami
na baka mamaya kung anong mangyari. Baka next month, mawala na si
daddy (cries)… Everytime we see him, I tell him, “Daddy, I love you so
much, daddy”
Second, Sandra and Jacqui said that “It’s payback time”. The years when parents
took care of their child is over and it is time for the children to take care of their parents.
This can be related to the sociological concept of socialization. Both of the respondents
identified that when they were little, they would have observed that their parents looked
after their grandparents when sick. They said that they were brought up knowing how to
50
value care for the elderly. And that they are doing such acts to implicitly teach their children
the same act of taking care of their parents.
Lastly, it is the time to spend together with what remains of the AD patient. In the
case of Jacqui, she spends time with her mother when she comes home from work and on
weekends. Even though they hire full time caregivers, they do what caregivers do on
weekends. She identified the time spent on taking care of her mother as precious. She knew
what was to come to her mother soon so she keeps videos of her mother’s last moments
before death. This is because a time to be alive is precious for the case of Jacqui’s mother.
Jacqui said:
Well, every day is a bonus. Iyong iba, kapag nababalitaan na ganyan ang
stage ng mommy ko,[sasabihil nila]”aba ganun?”na parang sila iyong
nalulungkot. Pero sa amin, we’re just grateful everyday. Kasi every day is
a bonus kasi sinabihan na kami na hindi siya tatagal. But that was nine
years!
Living with Alzheimer’s is also living between love and hate. The love and hate
relationship in the family became more visible and evident. Luisa shared that she and her
twin sister would always wonder why her mother would always tell stories of the moments
she had with her father, who is already deceased, but never of Luisa and her other siblings.
Luisa feels that they were taken out of the picture in which her mother would cannot
remember them. Although her mother knows their name, she cannot identify that they are
her children. This caused Luisa and her sister to wonder who their mother loves.
51
Ewan ko. Bakit parang ang nasa isip niya lang ay isang tao. Hahanapin
niya, “tirahan niyo ng pagkainsi daddy mo kasi dadating yun. Ganoon siya.
Itatanong ko sa kapatid ko “Bakit tayo wala sa memories niya? Siya
(daddy) lang ba ang mahal niya?” “Oo naman”, sabi ng kapatid ko, “Diba,
noong buhay pa si daddy, ang pagkain niya iba, tayo, iba”…. May
explanation ba doon? (to her mother)”Sino ba ang minahal ninyo? Hindi
niyo ba minahal ang mga anak niyo”
What was observed in this theme is that not only do bonds between family members
strengthen but it also created a gap between the primary family caregiver and the patient.
In the case of Luisa, there is a growing curiosity that haunts her and her siblings which
continuously question the love of their mother towards them. It can be seen that even in
the most positive effect of the disease, there is also the most adverse effect of it to the point
that even the love of a parent is being doubted.
Theme III: Mahirap pero Kinakaya
Struggles and Difficulties experience by primary family caregivers are broken into
five subthemes: behavioral difficulties, co-morbidity, physical struggles of the caregiver,
behavioral difficulties of the caregiver, and financial struggles.
Behavioral difficulties range from being forgetful, to incontinence, to denial of
illness, to being aggressive, and to having death-seeking behaviors. To begin with,
Buenafe, together with other primary caregivers, also experience difficulties regarding
forgetfulness and aberrant behaviors. AD patients would forget where they put an object,
or what date today is, or what they have done for the past hour. Buenafe said,
52
Kunyari magkukwentuahn kayo, makakailang tanong siya ‘oh si ano ba,
graduate na? Anong year na?’ Mamaya-maya ‘Anong year na?’… Ulit-ulit
na siya. Ayun, mahirap din.
Dr. Soriano would say that forgetfulness is a normal part of aging however what
really sets Alzheimer’s disease patients apparat from the normal senile individual is the
behaviors they show like one, incontinence. Marlene have had difficulties when it comes
to her mother’s urination and defecation. Even though her mother is wearing a diaper and
her bed have underpads, she still wants to urinate and defecate at the comfort room. This
adds to Marlene’s financial expenses and physical struggles of changing diaper and laying
underpads. Buenafe also have had difficulties when it comes to her mother’s urination.
There was one time when Felicisima stood up and when they checked the seat, it was wet.
When asked, Felicisima said she did not urinate but then Buenafe knew she is suffering
from incontinence.
Another behavioral difficulty is the denial of illness wherein patients feel that they
are able to do tasks even though they were told that that they have a disease. At most times
they forget that they do have a disease but in the case of Luisa, her mother denies the
disease. In turn, she feels she can do all things and thus she claims to do all the chores
which would lead to family conflicts because everytime that Luisa and other household
member would cook, for example, her mother would get angry and would say that they are
wasting food when all she does is provide and buy food for the whole family which is not
true according to Luisa because it is Luisa that buys food from the market. Her mother also
claims that it is her that pays electric bills which is also done by Luisa. It can be observed
that Luisa’s mother still thinks that she holds power in the household in which she can still
53
manage and command everyone to do tasks. However, she has a disease which she is
constantly being reminded of.
Aggressiveness, physical and verbal, is also a difficulty for the case of Luisa. She
said the statements below during the interview.
Kung minsan pumapasok ako may mga scratch ako dyan. Oo. Dahil sa
kanya. Nag-aaway kami madalas nga eh
Kasi inaaway niya yung buong pamilya niya eh. Oo. Alam mo yung
pagbibintangan ka ng magnanakaw, masakit yun eh. Kapamilya mo pa. Eh
sa totoo naman tinatago niya yung ibang gamit niya.
So namalengke kami, pagdating namin, sinalubong kami kaagad nung
bunso ko, “mommy mommy, umiiyak po si ate, inaway po kami,
sinabunutan po si ate bla bla” yung ganun
Luisa find it hard to take care of her mother because of the aggressive behavior that
her mother exhibits. She emphasizes that every day in their house is always her mother
accusing them of thieves, letting them move rooms at night, and telling them how they
waste food whenever they cook, For Luisa, such acts are hurtful most especially the verbal
ones. It is hard for Luisa to take on such hurtful words from her own mother.
Lastly, for the behavioral difficulties, is the death-seeking behavior of the patient.
Dr. Soriano is currently working on her thesis regarding depression on the aging
individuals and true enough, it can be observed on the elderly. The case of Sandra is one
of those. Sandra’s father loses appetite and does not want to eat anymore, does not want to
socialize with people anymore, does not want to go out of the house anymore, and does not
54
want to do tasks anymore. Such acts are a manifestation that he did not want to be in a
situation wherein he is not able to walk and do his daily tasks like before.
Consistent to the literature, Mace (2001) identified the changes in the behavior of
the patient above and added that these should be observed by the family caregivers and
should respond accordingly to avoid difficulties.
Co-morbidity refers to other diseases of the patient aside from having Alzheimer’s
disease. Jacqui said that family caregivers should watch over the AD patient of signs and
symptoms of other complication because it might be the cause of death and not the AD.
Attest to the statement of Jacqui, it is confirmed by both of the key informants. Buenafe,
Luisa, and Marlene identified that their mothers are also diagnosed with Diabetes and
hypertension, Sandra’s father may be suffering from depression, and Jacqui’s mother is
prone to pneumonia. Both Ma’am Peach and Dr. Soriano said that patients who have
Alzheimer’s are prone to acquiring disease wherein these complications may be the one
who would bring death to the AD patient. It is reiterated that this is why care is really
needed by AD patients because they are prone to infection and to acquisition of other
diseases.
Aside from being physically tired of the actual caregiving routine, family caregivers
also experience being home-bound. Buenafe said that if one is the primary caregiver, they
cannot live the house because the patient may do something dangerous inside the house or
they may get out of the house and lose their way back home. As Buenafe said,
Ang fear namin ay since may Diabetes siya, baka mamaya mahilo,
matumba, mauntog, ganun na walang makakakita sa kanya… Dati [naman]
55
may time na nakalimutan niya [yung niluluto niyang kanin] nasunog yung
kanin,
Behavioral difficulties between caregivers are also evident. In the case of Sandra,
she would always try to help her mother take care of her father but then her mother would
dismiss her help and become totally independent. Sandra would argue that her mother
should attend caregiver orientations but her mother would tell her that she already knew
how to give care for her father. This becomes a clash between caregivers, which is also
experience by Buenafe and her brother.
Yung bunso, siya yung [nakaka-away]. Kaya sabi ko, “kapag nag-aaway
kayo, iwasan mo nalang”. Kasi sasabihin niya (mommy)“bahay ko to,
lumayas ka!”. Ganun! Minsan. “bahay ko to. Ako ang nagpagawa ng bahay
ko”. Syempre papatulan naman nung isa. Sasabihin niya “wala ka na
ngang alam, hindi mo na nga alam”
Results for physical and behavioral struggles of caregivers are in line with the
literature of having caregiver burden when taking care of AD patients burden (Maik, 2014;
Conde-Salla & Gare-Olmo, 2010; Alzheimer’s Association, 2017; Sterling, 2013).
Lastly, financial struggles can also be observed. Luisa would always point out the
increasing electricity bill because her mother would always turn on the lights at night just
to tell the other members to relocate rooms. That became their routine and would sleep late
at night because Luisa’s mother would keep on turning light and making the vacate a room
and occupy another repeatedly. Financial struggles are also observed because of the
56
medicines and maintenance of the AD patients. Jacqui said that her mother, back then had
a medicine that was available only in the United States.
Theme IV: Making Things Seem Easy
Interventions of family primary family caregivers can be categorized into two:
interventions of the family caregiver for the patient and interventions of family caregivers
for themselves.
Tinanggal namin iyong relo dun. Kasi nakabase siya sa relo kung kakain
na kahit kakakain palang. Kapag nakita niya doon na lunch time na, kahit
kabibigay mo palang ng merienda or something to eat, sasabihin niya [na]
lunch time na. So walang relo sa bahay namin.
Iyong banyo, kailangang maglagay ako ng grab bar para may hawakan
siya pag naliligo. Kailangan [namin] lagyan ng mark na alam niyang
doon ang kwarto niya. Nakatago lahat ng kutsilo. Nakatago lahat pati
mga pati detergent lahat ng mga poisonous sa bahay, nakacabinet yan.
Baka mamaya matimpla ang Downy, halimbawa, kung ikakalat mo.
Malaking adjustment jan.
Mga pillows, mga bedsheets, kaya lahat ng gamit namin ngayon nakatago.
Ilalabas lang namin yung everyday na ginagamit namin.
The statements from Buenafe, Jacqui, and Luisa respectively implies that
adjustments have been made regarding the fixtures and furniture of the house for the safety
of the AD-inflicted member of the family. In addition, Jacqui have also learned to device
mechanisms on how to provide a secure environment for her mother. Jacqui’s mother,
57
when she was in her moderate stage, would always wake up at night and wander at their
house. Since Jacqui and her mother share a room, Jacqui devised a plan on how she would
wake up whenever her mother would leave the room at night. She tied a ribbon on the
doorknob to her ankle. Whenever the door opens, her foot will be pulled so she would wake
up to attend to her mother. In support, Ma’am Peach identified a dementia- friendly house.
She said during the interview,
The house should be dementia-friendly. Well-lighted yung [home]. Tapos
may mga bars na pwedeng pagkappitan lalo na sa [comfort room]. Tapos
lahat ng mga lalagyan should always be labeled para madaling kuhanin
and the lahat ng ballpen and unsafe na mga [gamit] dapat palaging
nakatabi.
There are also interventions for behavioral difficulties that AD patients implore on
their family caregivers. One of which is honoring that the patient can still do some of the
everyday tasks with little to total guidance. Guidance is important since they are not only
aging, they have a disease and disability to do simple tasks is possible. Buenafe, always
guides her mother in doing the activities of daily life. Ma’am Peach would also encourage
family caregivers to do the same. Buenafe would let her mother sweep the front yard in the
morning not just for exercise but also for her mother to function and helps lessen and
prolong deterioration.
The use of language is also observed when dealing with behavioral difficulties.
Sandra realized that since her father seldom speaks, a way that she thought of to alleviate
the depression state of her father is to ask questions about his past. Her father is a busy
person and he likes to converse about his achievements. Sandra would ask him of his past
58
achievements for him to start speaking and to clear his mind of the depressive state he is
in. In addition, Luisa also uses language to make her mother physically active. When they
are about to leave the house, Luisa will tell her mother stories and instances to have her
take a shower. Luisa said on the interview:
Kailangan niya maligo everyday so parang ang [sinasabi] lang namin sa
kanya is “aalis tayo”, ganyan, “may dadalaw na bisita, birthday ni ganito”
kahit hindi para lang mapaligo siya. Pero hindi pa rin, ayaw pa rin niya
maligo.
Aberrant behaviors also use language intervention with a lot of patience, as the key
informants have said. One has to patiently answer the same question multiple times in an
hour. This is true for all of the family caregivers.
Another behavioral intervention is controlling the patient through screening and
restriction. Marlene said that her mother liked the television series Ang Probinsyano.
However, the moment she was diagnosed with Alzheimer’s she disliked scenes where
characters die and get wounded. This is why every time Marlene’s mother will watch the
television, they will screen what movies and series are applicable to her.
Interventions are also done by the family caregivers for themselves to be able to
provide better care. First, they make themselves aware of the disease. They try to
understand how the disease progresses and how the disease affects their family members.
However, Dr. Soriano and Ma’am Peach identified that there is a problem with regards to
information dissemination of such books, materials, and resources to grasp the entirety of
59
the disease. Ma’am Peach further explained that that is the reason why caregiver
orientations are relevant.
Compromising through patience and adjustments is also one of the behavioral
interventions of family caregivers for themselves. As said earlier, patience is needed to
cope with the aberrant behavior of the AD patient. This becomes the norm of the family
caregivers with the given change which is the diagnosis of the Alzheimer’s on their parents.
Theme V: Efficiency is the Key
Coping mechanisms of the families to better live with Alzheimer’s can be
categorized into four: coping mechanisms with regards to the signs and symptoms of the
disease, the betterment of the individual, the betterment of the family, the unique ways of
efficiently living with the disease.
Primary caregivers, first and foremost, sacrifice their time and leisure, as Buenafe
said, “Sacrifice talaga, yung sa parang ‘me’-time… may ibang araw naman yun”. Buenafe,
here, emphasized the scheduling and planning ahead of time to cater the needs of her
mother and of herself. Consistent with what Sandra said during the interview, “Siguro mas
nabawasan iyong time ko”. Sandra also manages her time as a wife, as a mother, and as a
working individual. However, they both emphasized that they put into importance the time
they allot in taking care of their AD family member. Literature in Brodarick (2013) also
agrees with the result. Since Alzheimer’s is a disease in need of total care and family
support, the time of family members, most especially by family caregivers is essential in
providing non-pharmacological treatments. Key informants also attest to this claim.
Moreover, it is also important to note that the participants do not mind the time that caring
is involved. This will lead to the second point.
60
Caring is not a burden when it comes to the family. Jacqui said that it is not a burden
at all to care for her AD-inflicted mother. In her case, she was brought up seeing and
watching her mother care for her grandmother who also has dementia. Somewhat she
learned how to value care given to parents with such a disease. That is why she views
caregiving as not a burden at all. She even said that it is not only her that does not treat
caregiving as burden but the entire family and it is because it is learned through observing
and living with that routine. Even her nieces and nephews learned and understood the
importance of giving care. And somehow, she and her siblings feel secured when they
become senile since they are all candidate for having Alzheimer’s. This notion is in contrast
with what was being discusses earlier which is caregiver burden. For the case of Jacqui,
there is no burden at all because of the that the patient is her mother, a family.
Nagvivideo kaming ganun [and] we keep it so that even if she’s gone, I have
a record of it. Diba? Pinaghahandaan mo iyon. (cries) Even iyong damit na
susuotin. Iyon iyong sinasabi kong anticipation. Everything is naka-ready.
[Pero] you can never be ready. Never parang “I’m ready, she can go
anytime”. Kahit na anong paghahanda namin, alam naming its coming, you
know its coming, but when it happens, its still sad (cries).
The above statement was said by Jacqui on anticipation as one of the coping
mechanisms to efficiently live with Alzheimer’s. However, their family cannot be to the
extent where they are fully ready. Even though they anticipate the death, ready the dress,
ready the funds, their selves are not completely ready because the patient is their mother.
Coping mechanisms for the patients are also identified by the respondents. One of
which is maximizing the family networks and personnel. Jacqui, when they do not yet
61
know that their mother had AD, but is showing signs and symptoms, used to consult with
her mother’s cardiologist who is also their uncle. This is using the family’s social networks
wherein it serves as their social capital.
In addition, family members are also important in taking care of the AD patient,
especially the children. Marlene said,
Meron nga kaming baby. Papalakpak iyong bata, papalakpak din siya… eh
minsan sumasayaw siya, si nanay, mamayatumataas na iyong kamay siya
alam mo yun, siguro nakakatulong yun sa kanya.
Marlene’s case uses their baby for her mother to be occupied and to cope up with
the Alzheimer’s. This is a manifestation of using and maximizing household personnel
wherein it is not only the family caregiver that is involved in taking care of the patient.
Since the disease is a family disease, the household is also involved. Ma’am Peach also
identified as having baby in the house to help AD patients in alleviating behavioral
changes.
Families also makes living easy for the patient as always discussed earlier,
adjustments. It is important to make adjustments not for the family but for the AD member.
To help slow down the progression of the disease, adjustments when it comes to the house
structure, primary caregiver behavior, time, and norms must be observed. Using the
theoretical framework, these adjustments are the new norms of the primary family
caregiver. Because of the introduction of the disease to the family, the family enters a new
stage and since the family statics are stage dependent, roles, relationships, and norms
changes depending on the stage.
62
Coping mechanisms are also observed within and among family members. First,
participants identified acceptance as a means to attack the disease. Jacqui emphasized that
acceptance is the first to consider when dealing with Alzheimer’s. She added that
acceptance, together with understanding, is essential to effectively deal with Alzheimer’s.
Dr. Soriano’s statement is consistent with that of Jacqui’s saying,
Kasi they develop acceptance and awareness of the disease na meron pa rin
talagang stigma much well received ng dementia or Alzheimer’s in the
Philippines. For them baka “Hindi, normal part of aging lang ito kaya
nagkakaganun. I-deny natin sa ating mga sarili na nagkakaganito si mother
or father”. Kung kakulangan sa kaalaman siguro, not at an expert level,
iyong sa lay person’s understanding. Lack of understanding of the disease.
Second, family days are considered as important as time pass by. This can be seen
and observed in almost all of the families. Buenafe bonds when they are complete together
with her cousins who also help them in taking care of their mother. Sandra’s family had
gone to a cruise which she said that it was their time for their father and that the cruise is
for their father. Marlene, since they lived in a compound, at night spend time with her
mother and eat dinner with what their mother had cooked for them. They converse for a
while then would return to their respective houses. Jacqui also said that they value the time
they are complete. Those who are abroad come home and they gather in their house when
Christmas to see and visit their mother. Jacqui also reiterated that having family gatherings
and family days are not an obligation for their family but it as the willingness of a family
member. Since their family dynamics are close to perfect, they find it easy to plan and
conduct family gathering however big or small it is.
63
Third, in line with what Jacqui had said, family support, through physical caring
and through finances, is not an obligation. Dr. Soriano would attest that it is true. She said,
Hindi kagaya sa ibang bansa na [maraming] available na home care
facilities. Dito hindi, parang may unwritten agreement na you have to look
after the aging.
Ma’am Peach would also agree as she said during the interview, “Hindi pa rin tayo
handang mga Pilipino na ilagay sa nursing home iyong ating [parents]”. There is a
possibility of a feeling of guilt as also stated in the literature by Hinton and Levkoff (1999).
It can be said that it still roots from the culture of the country wherein the accepting and
dealing with the disease has something to do with how families accept the disease. As for
the participants, they understood and accepted the disease. However, there are still isolated
case like that of Luisa’s.
Another coping mechanisms of family members is to acquire knowledge of the
whereabouts of the disease through books and internet. A problem about this is the
availability of resources as identified by Dr. Soriano wherein there may be resource but it
may be difficult to access by the public. Alzheimer’s does not target who to attack, anyone
can be a victim of the disease that is why availability and accessibility of resources to
further understand the disease should be open to the public.
Lastly, some of the families get a feeling of being blessed through faith and prayer.
Buenafe, Sandra, and Marlene identified that they pray and that prayer helps. Jacqui
experienced being blessed in an instance. She told a story,
64
We are being blessed. There was one time na na-hospital siya (mother). My
sister received a bonus from her work tapos exactly the amount of our bill
in the hospital. So iyon iyong sabi namin, God provides. God provides. So
we are not scared. Kasi its not just from the book that God provides, its an
experience. So ang galing, na- biro mo naman ma-hospital minsan hundred
thousand. Mahina. And she received a bonus in the office, exact the amount
of what she needs. Kaya sabi namin, saan to manggagaling diba? May
ganun. May ganun. So kasama ang faith. Kasama ang faith.
Dr. Soriano also identified spirituality and faith as one way of dealing with the
disease. She also emphasized that it is not ultimately love that what keeps primary
caregivers continue to give care but faith. She said during the interview
That is what could keep you sane no? “Kaya I’m doing this because I am…
reflecting [the] love I receive from the ultimate Creator of the people with
or without Alzheimer’s”. Kung [love] kasi parang temporary na “ginagawa
ko kasi mahal ko ‘tong taong to” pero eventually you find yourself na parang
naddrain, nanghihina,, di na kayang kumeep-up, ilagayn na sa home care
for the aged or ipapanalangin nalang na please mamatay, parang ganun
minsan. Pero [kapag] dun grounded sa [religious] concept, I believe ah and
what I observe din, ay madalas iyong mga patient, yung mga family members
ng patients na may dementia, pati caregivers, kapag nakita mo faith-based
nila, yung anlakas ng spiritual stance, sustained eh. Parang kahit, galing
mo, mapapasaludo ako sayo, kaming mga clinicians stress na, eh tuwing
kelan lang ba namin nakikita ang patient, once a week, an hour, eh kayo
65
everyday niyo kasama, what keeps you sane? Na ganun na amidst all this.
Sustained kahit antagal na nilang hinahandle, maririnig mo sa kanila “ay
talagang tiwala kay God or binabalik ko lang naman kay God kung anong
tinatanggap ko” as compared to those na kaya niya ginagawa cause “I think
wala na akong ibang choice, wala na akong work eh, ito nalang”. Or yung
iba naman “wala eh, ako yung naiwan eh, lahat ng kapatid ko eh no chaice
eh”. Or iba naman sadly for the ano, inheritance returns.
Although rare, Jacqui’s instance can occur. The faith of Jacqui’s family grew even
more because of the belief that God provides for what they need and more. This claim is
consistent with that of Beuscher (2007) wherein in the time where cognition declines,
meeting the spiritual needs of patients and primary family caregivers alike in the only way
to cope up with the disease. However, this is in contrast with that of Campbell (2001)
stating that spirituality has no significant relationship with giving social support to the
patient.
There are also unique ways of coping with the disease. One of which is Jacqui and
her sister’s own acronym: APPLUAD. Acceptance. Prayer. Patience. Love. Anticipation.
Understanding. Devotion. These are evident in what resulted from study. They always put
into mind the acronym and when they are losing hope, they would remind the acronym and
they would continue hoping. The acronym served as a guide for them to better live with
AD.
Another is the care of Luisa in which they connected her mother’s behavior with
the fullness of the moon. She said,
66
Kasi feeling namin, pagkapa[bilog] ang bwan, pagpalaki palang, let’s say
first quarter, ayan na siya. Lalo pag full moon, talagang [tumitindi] yung
pag[ka-aggressive]. Kasi ang mga anak ko ganun din eh “Mommy, look”
“Bakit?” “yung moon”. ”Nako”, sasabihin namin pare-pareho.
Lastly, there is also a search for information not to deal with Alzheimer’s but to
know until when will they suffer. This is for Luisa’s case. It is evident that the family
dynamics of Luisa is the exact opposite of that of Jacqui. She had said during the interview
that sometimes they search the net of Alzheimer’s to know when it will end.
Matindi na Alzheimers. Sabi namin minsan “gaano pa ba katagal ang
buhay mo?” (laughs) “gaano katagal mo pa ba kami pahihirapan” (laughs)
although alam ko kasalanan iyon pero kung minsan talagang maiiisip mo
eh lalo na kapag sobrang wala kahit na kilala ka niya mumurahin ka, ganun
siya
This is a rare case in the Philippine context where the country is family-oriented.
True enough Dr. Soriano identifies isolated cases as such and said,
Wag naman sana, pero meron sigurong apat (out of ten) na “di bale na, pa-
expire na naman na tong elderly na to, hayaan nalang natin, hintayin
nalang natin” Ansama no? Minsan kasi mapapanood mo rin sa news na
pinabayaan nalang si mother na nawala or naligaw “ewan ko, buti nalang
naligaw na yan” may mga ganun documentary no? mga isolated cases na.
Limitations of the Study
67
This study only took data from the primary caregivers in which the entirety of their
family dynamics cannot be fully discussed. Moreover, categorizing of family caregivers
according to social class, gender, and stage of the Alzheimer’s is not taken into
consideration. Given that the organization that the researcher tapped to gain participants is
from St. Luke’s Medical Center, only those who have access to medical services are
included in the study. There may be a significant difference when social class is used to
classify participants.
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CHAPTER VI
SUMMARY, CONCLUSION, AND RECOMMENDATION
Using the Family Development Theory, it can be observed that as the families
changed stage into having an AD inflicted member, family statics also changes regarding
the roles, relationships and normative demands of, not only the primary family caregiver,
but also of the whole family. The results of this study showed the extreme positive effect
of Alzheimer’s to the family and also the extreme adverse effect of Alzheimer’s to the
family dynamics.
It is evident that prayer is still what keeps family caregivers going. It is still one of
their coping mechanisms. True enough, in battling a disease without cure, the only miracle
one can hold on to is faith. Although, this does not prove of the literature cited, culture, as
many authors have pointed out is an identifier of why family caregivers continue giving
care despite the caregiver burden they are experiencing.
The researcher recommends that families start to socialize children to understand
the importance of giving care to elderly. Since the Alzheimer’s is an inherent disease, their
mothers or fathers are candidates for the acquisition of the disease. As early as when
children are little, educating them will lead to better family dynamics in providing care just
like Jacqui’s case. For the organizations like Memory Care and Alzheimer’s Disease
Association of the Philippines, it is important that they cater the needs of the patients and
their family members. They should continue their great service to conduct caregiver
orientations and they should expand their reach which they are currently doing. Such
efforts will make and help families to understand the disease which will enable them to
69
provide better care to their AD family member. Government policies should also concern
the families of the AD patients. Since most families are having trouble with finances, it is
a first step that dementia related treatments are covered by the PhilHealth however, much
is still needed by the families. One of which is the medicines available and accessible to
families, nursing homes that would especially cater to the needs of the Alzheimer’s
patients, and government policies to make the Philippines a dementia-friendly environment
for its aging population.
The researcher recommends other researchers who wish to study the same focus to
take social class into consideration because it may affect how the family dynamics work.
Moreover, the researcher also recommends to fully grasp the family dynamics and how it
affects the caregiving role of family members. A quantitative study will also help in
identifying relationships of which affects which for example, socialization affects
acceptance of the disease and the like.
70
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APPENDICES
A. Guide Questions
Socio Demographic Profile of Respondent

Name (optional/codename)
Age
Gender
Relationship to the Patient
Occupation
Proper Questions
I. About the Patient
1. Socio-demographic profile of the patient (patient’s name (codename), age,
gender, occupation before Alzheimer’s and role or position in the family
before Alzheimer’s)
2. What is the current stage of the AD of the patient?
3. When did the patient acquired the disease?
4. What are the changes in behavior of the patient that the family observed
and influenced the family’s decision to bring him/her to ADA?
II. Family Caregiver
1. What is the role that you play in the family or in the household?
2. What do you know about the nature of the disease?
3. On the event that the family started to know about the condition, what are
your reactions?
4. What does it feel like having a member with AD? Can you please describe
your typical day in the family?
5. What are the struggles of having a family member with AD? How did AD
affected the roles that were being played by the members of the family?
6. What are the struggles that you have experienced as the primary
caregiver?
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7. In what ways do having a family member with AD change the
interactional dynamic of your family? Financial needs of the member?
Family decision making? Caring for the patient?
8. How do you address these difficulties most especially with the behavioral
changes and swings of the patient?
9. How do you care for your members with AD?
10. What is your suggestion when it comes to caring and aiding people with
AD?
B. Letter of Consent
Ctrl No: ____
Dear Respondent,
Good day! I am Anna Katrina Quanico, a graduating BA Sociology student at the

University of the Philippines Los Baños. I am currently at the data gathering stage
of my thesis entitled Beyond Caring for the Senile: Experiences and Changes in
the Family Dynamics of those with Member/s Diagnosed with Alzheimer’s. The
primary aim of my study is present the experiences of family members with AD
patient and explore how they provide better care by understanding the situational
context of the family.
You are being invited to take part in this research because as a chosen participant
of the study, I know that you can contribute much to our understanding and
knowledge regarding the experiences of families with members with AD.
The interview will only take an hour and will be recorded. Please rest assured that
all information will be confidential and used only for academic purposes. Code
names will be assign for each participant. Your participation is voluntary and you
may withdraw from the study at any time, without having to give any reason. If you
have read and agreed to become a participant, kindly sign on the space provided for
you.
Thank you and hoping for your consideration.
CONSENT OF PARTICIPATION:
I have read and I understand the provided information and have had the opportunity
to ask questions. I understand that my participation is voluntary and that I am free
76
to withdraw at any time, without giving a reason and without cost. I understand that
I will be given a copy of this consent form as a proof that I voluntarily agree to take
part in this study and that the researcher will follow strictly the ethics of conducting
a research.
_______________________________ _________________
First Name and Signature of Participant Date
I believe that the participant is giving informed consent to participate in this study
________________________________ _____________________
Signature of Researcher Date
C. Letter for the Alzheimer’s Disease Association of the Philippines
March 28, 2018
Dr. Michelle Vida Anlacan

President
Alzheimer’s Disease Association of the Philippines
SUBJECT: Permission to conduct an in-depth interview with some families

with member/s diagnosed with Alzheimer’s Disease
Dear Dr. Anlacan,
Good Day!
I am Anna Katrina Quanico, a graduating BA Sociology student of the University
of the Philippines Los Baños and is currently working on my thesis entitled Beyond
Caring for the Senile: Experiences and Changes in the Family Dynamics of Those
with Member/s Diagnosed with Alzheimer’s.
Since families are considered as ‘invisible victims’ of diseases like Alzheimer’s,
the study aims to present the experiences and changes in the dynamics of the family
with member/s diagnosed with the disease. Furthermore, it also aims to elaborate
the challenges and coping mechanisms use by these families. Results of the study
would enable the researcher to recommend ways how to give better care for their
patients.
In line with this, I would like to ask your good office to help me with my study. I
am in need of families who are willing to be my research participants. Data would
be gathered from them through in-depth interviews. Please be assured that the
77
identity of these respondents and all the information they will give would be
confidential and be used for academic purposes only.
Your understanding and permission would be of great assistance to make my thesis
a success and help me graduate on time. If you have questions and clarifications,
please feel free to contact me at my mobile number 0915 538 7587 or e-mail me at
agquanico@up.edu.ph. Attached is the summary of my thesis proposal and copy of
the guide questions.
Thank you and hoping for your consideration.
Sincerely, Noted:
Anna Katrina G. Quanico Shiela May T. Julianda

BA Sociology Thesis Adviser
2014-63314 Assistant Professor 1, Department of Social Sciences
D. Themes for Analysis

I. Familial Context
A. Roles within the Family
1. Role of the Members
2. Role of the Patient
B. Relationship Within the Family
1. Cooperation through willingness
2. Communication through Consultation
3. Planning through anticipation
II. Living with Alzheimer’s
A. Living with Fear
1. Fear of other complications
2. Fear of worsening situation
B. Running out of Time
1. Every day is a Bonus
2. Its payback time
C. Love vs. Hate
78
1. “I love you daddy”
2. “I hate her”
III. Struggles and Difficulties
A. Behavioral Difficulties with the Patient
1. Forgetfulness
2. Aggressiveness
3. Incontinence and Hygiene
4. Denial of illness and situation
5. Death-seeking behavior
B. Co-morbidity
1. Diabetes
2. Hypertension
3. Pneumonia
4. Depression
C. Physical Struggles of Caregivers
1. Home Bound
2. Actual caregiving routine
D. Behavioral Difficulties of Caregiver
1. Independence and Dismissing help
2. Acceptance
3. Clash between Caregivers
E. Financial Struggles
1. Medicine
2. Bills
IV. Interventions
A. Structure of the House
1. House Fixtures
2. Devising for AD person’s sake
B. Behavioral Interventions
1. Honor their remaining activities
2. Use of Language
79
3. Controlling Patient through screening and restriction
C. For the Caregiver’s Sake
1. Awareness and understanding
2. Compromising through patience and adjustments
V. Coping Mechanisms
A. Of the Individual
1. Sacrifice of time and leisure
2. Caring is not a burden
3. Anticipation but never ready
B. For the Patient
1. Maximizing family networks and personnel
2. Make living easy for the patients
C. Among Family Members
1. Acceptance as a means to attack the disease
2. Family days
3. Financial and Physical Family support
4. Acquisition of knowledge through books and internet
5. Blessed through faith and prayer
D. Unique ways of living with the disease
1. APPLAUD
2. Moon connection
3. Until when will she live
80
Table 3. Codes for the First Research Objective
Research Case 1: Buenafe Case 2: Sandra Case 3: Marlene Case 4: Jacqui Case 5: Luisa
Question
“Parang ganun kasi sa “Minsan makakatatlo, “As in talagang, “habang malakas pa, “Parang sasabihin niya sa
family, sa kultura apat na beses niyang nagagalit siya, you know, na they amin, ahm “anong
natin, parang mas pinapanood yung irritable, tapos yung wanna spend time” ginagawa niyo dito?
nagiging ano siya, same movie” mga ginagawa sa Pamamahay ko ito”
magkakaisa kayo kanya, ayaw na niya. Something ganyan”
dahil sa pag-aalaga Tapos utay utay, “Ahm ang family
“Kasi he finds himself
ganun” “hoy, babae”, ganun namin laging may
parang useless”
yung sagot niya, “hoy event, pag may “ansama-sama ng ugali
babae”. Tapos yung birthday, lahat ng niya eh”
“Mas naging open, “Parang nawalan na isang apo niya ang April magsasama-
What are the
Since may siya ng will to live” tawag niya “hoy ” na sam, Lahat ng June,
changes in
the family Alzheimer’s si ppuro “hoy ” na kami ganun, Christmases. “Ayun marami na siyang
dynamics that mother, mas open lahat” inayawan, magluto, ayaw
“Wala na siyang role yung mga nasa
occurred yung comminucation na ano not like before niyang maglinis, ayaw na
within America, wala ibang
kung ano yung na siya talaga yung niyang yung amoy niya,
isip yan kundi
families with gagawin. Katulad nagaano ng finances, “Pero yung past niya, Nawala na rin, yung
AD patients? makauwi kasi nga
ngayon, since ako siya yung nagaasikaso naalala niya” pagliligo”
habang buhay si
paalis na rin syempre, ng mga pinapaupahan Mommy, gusto nila
sila yung maiiwan, namin. Ngayon , wala nakakasama”
mag-aano sila ung na talaga” “tapos yung dumating “Nagkagap kaming lahat
sinong mag-aalaga” din asa point na ayaw eh lalo na ako”
niya kumain”
“I think my “Well, I can say, may
relationship became naging close”
“Mas naging closer.
better. Although I had
81
Mas naging close ako a good relationship “parang naging ano “Kapatid ko nagkasakit
sa mother ko kasi naman na with my siya, hindi na siya dahil sa kanya. Panaganay
“ang tawag na nila
naiintindihan ko siya dad pero we became madaling magalit” ko nagkasakit ng soriasis”
kay lola “angel ””
closer”
Madalas silang mag-
away”
“Laging hinahap yun
“she will become the
“naalala ko rin yung tapos sasayaw siya,
time na yung siya. baby eventually”
papalakpak siya pero
“Dati kasi ang Maalaga siya sa lola sabi ko parang naging
ginagawa ko parang ko eh, sa lola at lolo bata siya”
since yung, tinanggal ko. Sa lahat na silang “Ganun eh,
namin yung relo dun. anak, siya ang “Sabi ko kung pinaghahandaan yun,
Kasi nakabase niya sa pinakamaalaga sa dementia man ito, when she’s gone.
relo kung kakain na kanilang lahat sa lolot parang maganda ang Dapat nakahanda ka
kahit kakakain lola ko” naging dulot kasi di dun.”
palang. Kapag nakita tulad nung dati na
niya doon na lunch mag-aano siya,
time na, kahit mauuna pa siyang
kabibigay mo palang magalit”
ng merienda or
something to eat,
sasabihin niya lunch “Siya pa rin talaga
time na.” ang masusunod
halip na maging isip
bata siya, dapat pag
nakikita niya yung
baby, dapat mas
matanda siya”
82
Table 4. Codes for the Second Research Objective
Research Case 1: Buenafe Case 2: Sandra Case 3: Marlene Case 4: Jacqui Case 5: Luisa
Question
“kasi hindi ka “he’s trying to fight it “Minsan pipigilan “every day is a bonus” “bakit kapag
makakalabas, hindi of in the beginning eh namin siya kasi nagkkwento siya,
ka niya kasi he said, “hindi diabetic siya hindi kami kasama.
papayagan.” sinabi ko yun”” “we’re just grateful every Yung mga anak. Puro
Atsaka hindi,
day” yung tatay ko, yung
nagmumura talaga,
tatay ko lang.
“Parang ikaw yung (whispers) putang
“we are having difficult nagtataka kaming
mag-aadjust para sa ina. Hindi naman siya
time to see that he can’t “Pinakamagastos ang end magkakapatid”
kanya, hindi sya nagmumura ng as in
remember and then stage kasi we have to
yung mag-aadjust talaga! “Nay ikaw
plus yung depression make a room na parang
para say o kung bay an?””
anong gusto niya, state niya” hospital na nakahospital “Kasi alam mo yung
What are the bed” mumurahin ka from
yung yung gusto
changes, joys and
niya.” head to… ayan
sorrows, that “Pagchchange ng
“Parang I always, it’s naiiyak ako. (laughs)
primary family diaper niya”
the time for me to tell “So that is around 30, 000 from head to foot”
caregivers face “Ang fear lang kasi
with regards to him that I love him so annual. Tapos ang nurse.
namin ay kunwari much kasi natatakot
the condition of Mga 1,200 a day mura na
since may diabetes “hirap siya maligo,
the Alzheimer’s kami na baka mamaya yun”
siya baka mamaya kung anong mangyari” ayaw niya”
patient?
mahilo, mitumba,
mauntog, parang
ganun na wala ng “Natawa siya. So sabi
“Parang, gusto ko namin, that’s the last thing “yung kettle ilalagay
makakakita sa
iparamdam na mahal that she can do : smile. ko lang dyan, makita
kanya”
ko siya, hinahalikan ko Blessing yun diba?” mo yung kettle wala
83
““Ma, umihi ka ba” siya nang husto kapag na dun andun na sa
“hindi eh” pero hinuhug ko siya” cabinet niya”
“kami dalawa lang kami
feeling namin,
ng sister ko na
syempre may
nagsusupport. Tapos kung
incontinence na “Kung minsan
anong maibigay nila, no
siya eh.” pumapasok ako may
obligation eh”
mga scratch ako dyan.
“Pero malaking puhunan Oo. Dahil sa kanya.
“financial kasi ah. Mamumuhunan ka sa Nag-aaway kami
mahal rin kasi yung kanila. Andyang mag- madalas nga eh”
gamut, ayun. Dati aabsent din yan”
yung Aricept niya
5,000 per 8 tablest “Sisisihin ka pero
lang siya. So siya naman yun”
parang 30 tablets.
Once a day.”
“I hate her”
“dati may time na
ano, nakalimutan
niya so nasunog “wala na akong pake
yung kanin, yung sa kanya”
niluluto niyang
kanin.”
“kahit na kakabigay
mo palang ng pera,
hindi niya alam
kung saan niya
nilagay”
84
Table 5. Codes for the Third Research Question
Research Question Case 1: Buenafe Case 2: Sandra Case 3: Marlene Case 4: Jacqui Case 5: Luisa
“kapag nag-aaway “its payback time” “Tinatali ko sap aa “aalis tayo ganyan,
kayo, iawasan mo ko yung doorknob may dadalaw na
“Dati gusto ko yan,
nalang” ng kwarto, para bisita, birthday ni
ayoko na” kasi nga
“Parang all out na kapag hinila niya, ganito”
puro patayan, ayaw
kami” mahihila ang paa
“iba ibang games sa na niya yung mga
ko, magigising ako”
binigay sa mga ganun na pwede
“meron talaga time
convention ng magagalit siya” “Yung stage na
Alzheimer’s. Match na pinasundo ko
yan, nakatago lahat
What are the cards” talaga siya sa
ng kutsilo.
interventions that kapatid ko .
Nakatago lahat pati
primary family “Yeheeeey! Its
“may guide na siya detergent lahat ng
caregivers do for independence day!”
sa activities of daily mga poisonous sa
specific bahay,. Baka
living.
behavioral mamaya matimpla
kasi wag mo siyang
changes caused by ang downy”
i-restrain sa activities
Alzheimer’s of daily living niya”
disease “kailangang
-
maglagay ako ng
crambar para may
hawakan siya pag
naliligo”
“may garden kami
sa likod. So
nirampahan ko”
85
Table 6. Codes for the Fourth Research Question
Table 6. Codes for the Fourth Research Objective
Research Question Case 1: Buenafe Case 2: Sandra Case 3: Marlene Case 4: Jacqui Case 5: Luisa
“iniintindi lang “Parang pag “Papalakpak yung “We pray the “Ganun lang kami,
kasi syempre matanda ka na sa bata, papalakpak rosary together” kung ano lang yung
parang though buhay, din siya. gusto niya,
hindi hundered magfflashback: Pappalakpak yung ginagawa namin”
percent na yung time na bata baby gusto, “We are being
What are the maiintindihan mo. ka pa, “daddy” papalakpak din blessed. There was
coping Pero at the end of ganun” siya. Eh minsan onetime na na- “pagkapaano ang
mechanisms and the day wala ka sumasayaw siya, si hospital siya. My bwan, pagpalaki
processes of the “I like na lahat kami
naman magagawa nay mamaya sister received a palang, lets say first
family to nagcocontribute.
kasi andyan na tumataas na yung bonus from her quarter, ayan na
efficiently live We are helping
yan.” kamay niya alam work tas exactly the siya”
with members mom to alleviate
mo yun, siguro amount of our bill
diagnosed with “sacrifice talaga.” the stress that she is
nakatulong yun sa in the hospital. So
Alzheimer’s feeding”
“diba yung may kanya” yun yung sabi “minsan “gaano pa
disease Alzheimer;s “Siguro mas namin, God ba katagal ang
pwedeng nabawasan yung provides” buhay mo” (laughs)
magwander, so time ko” “gaano katalagal
sabi ko “Ma, Sa mo pa ba kami
susunod, dito ka
“A-P-P-L-A-U-D” pahihirapan” “
lang, parang point
“caregiver
to point lang, wag
kang lalagpas orientation “
dun””
86
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Beyond Caring For The Senile: Experiences of Primary Caregivers With Family Members Diagnosed With Alzheimer's Disease

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UNIVERSITY OF THE PHILIPPINES LOS BAÑOS

COLLEGE OF ARTS AND SCIENCES

Bachelor of Arts in Sociology

ANNA KATRINA GARCIA QUANICO

BEYOND CARING FOR THE SENILE: EXPERIENCES OF PRIMARY

SHIELA MAY T. JULIANDA

Permission is given to the following people to have access to this thesis:

Student’s signature: _________________________________________________

ANNA KATRINA G. QUANICO

Submitted in partial fulfillment of the

Department of Social Sciences

SHIELA MAY T. JULIANDA

DWIGHT DAVID A. DIESTRO

Accepted as partial fulfillment of the requirements for the

DR. FELINO P. LANSIGAN

(UPLB) under the curriculum of the Bachelor of Arts in Sociology.

and dynamic which helped her understand society better.

Behind the success of my journey as a BA Sociology major, is the many people

In the times I find graduation seemed unreachable, I would like to express my

BIOGRAPHICAL SKETCH ............................................................................................... i

CHAPTER II THEORETICAL FRAMEWORK ............................................................. 13

CHAPTER III REVIEW OF RELATED LITERATURE

CHAPTER IV RESEARCH METHODOLOGY

CHAPTER V RESULTS AND DISCUSSION

A. The Five Cases ....................................................................................................... 31

CHAPTER VI SUMMARY, CONCLUSION, AND RECOMMENDATION................ 69

Summary of the Sociodemographic Profile of the Research Participants ………40

Summary of the Characteristics of the AD Patients……………………………..41

Codes for the First Research Objective………………………………………….74

Codes for the Second Research Objective……………………………………….76

Codes for the Third Research Objective…………………………………………78

Codes for the Fourth Research Objective……………………………………......79

Projected number of People (in thousands) with Dementia in the Philippines…...5

Background of the Study

Recently, the RA 10911 or the Anti-Age Discrimination in Employment Law is

community to participate in the labor force.

their families. In response to dependency, Filipino families, compared to other Asian

Failure to do so is incorporated in the concept of “hiya” in the Filipino culture. Moreover,

conditions like Alzheimer’s disease.

neurodegenerative disease that is mostly experienced by elderly people (Alzheimer’s

increase (Alzheimer's Association, 2017). According to the statistics provided by the

was observed in the country.

Alzheimer’s disease is an unstoppable disease that progresses quickly the moment

Association, 2017). Annually, deaths due to AD increases as shown in Figure 1. In the

absence of treatments leads to further research and implementation and recommendation

of total care for the patients (Medline Plus, 2017).

Memory Care, 2017).

Alzheimer’s not only affect the

family caregivers but the family as a

functional entity. Changes in the family

starts with the designation of the

primary caregiver which then causes

changes in the roles of the family

members (Juergen & Blau, 2002).

When in need to communicate with wrongdoings, it is best to be constructive. Dynamics

only hasten the deterioration of the functionality of the patient.

the role of their parents in their family.

conference. In a family conference, members communicate about problems and solutions.

families struggle to live with Alzheimer’s Disease.

In the Philippines, Figure 2 shows the prominence of Alzheimer’s in the Philippines

to manage caregiving struggles yet struggles in living with AD is situational depending on

strengthen or weaken. The quality of relationship, they further explained, is a manifestation

Situational family context is concluded to have significant effects on an individual’s