ALZ TISS

i
Experience of family caregivers of Alzheimer’s: A study in
Kerala
Ms. Elizabeth Soby
A project Report Submitted in Fulfilment of the academic
requirement of the Degree of MA in “Social work in Public
Health”
Centre for Health and Mental Health
School Of Social Work
Tata Institute of Social Sciences
Mumbai
2015

ii
DECLARATION
I, Elizabeth Soby, hereby declare that this dissertation entitled ‘Experience of family
caregivers of Alzheimer’s : A Study In Kerala’ is the outcome of my own study
undertaken under the guidance of Dr.Asha Banu Soletti , Professor & Chairperson,
Centre for Health and Mental Health, School of Social Work, Tata Institute of Social
Sciences.. It has not previously formed the basis for the award of any degree, diploma,
or certificate of this Institute or of any other institute or university. I have duly
acknowledged all the sources used by me in the preparation of this dissertation.
4th
March 2015 Ms. Elizabeth Soby

iii
CERTIFICATE
This is to certify that the dissertation entitled ‘Experience of family caregivers of
Alzheimer’s: A Study in Kerala’ is the record of the original work done by
Ms.Elizabeth Soby under my guidance and supervision. The results of the research
presented in this dissertation/thesis have not previously formed the basis for the award
of any degree, diploma, or certificate of this Institute or any other institute or
university.
4th
March 2015 Dr. Asha Banu Soletti
Centre for Health and Mental Health
School of Social Work
Tata Institute of Social Sciences,
Mumbai

iv
ACKNOWLEDGEMENT
A journey is made easier and interesting with the help of fellow travellers. The
process of this research was two years long and but at the end of it, I feel completely
evolved, involved and enriched. The road to the completion of the research was filled
with hurdles but now, when I reach the final destination, I feel that all those hurdles
were a great learning experience and all the efforts taken were worth the experience of
being a research student.
I owe the birth as well as the completion of this research to many people and
incidents, apart from my own efforts. I would like to extend my sincerest gratitude to
each one of them, who in their own special way made conceptualizing and writing
this dissertation possible. They have all contributed to my learning and to my strength
and patience in their own way. The constant support and encouragement with the co-
operation of everyone involved is much valuable for me.
First and foremost, I would like to thank all the caregivers of the Alzheimer’s patients
who shared their stories with me and allowed me to share it with the outer world.
Thanks for patiently answering all my questions and finding time for me in your busy
schedule. Without their support and great patience this thesis would have not
completed, for which my mere expression of thanks likewise does not suffice.
The thesis would have not been possible without the help, support and patience of my
guide Dr. Asha Banu Soletti. I express a deep sense of sincere gratitude to my guide
Dr. Asha Banu , who is the chair person of Centre for Health and Mental Health, Tata
Institute of Social Sciences. Her valuable and complete guidance, judicious and
constructive suggestions and valuable criticisms shaped my thesis academically. I
thank her for not only guiding me but also giving me tremendous encouragement and
showing immense appreciation for what I have done. I sincerely thank you ma’am for
your patience, timely assistance and for everything that helped me to finish this
research work in due time.
I also extend my extreme gratitude towards the organization Alzheimer’s and related
disorders society of India (ARDSI), Cochin chapter and especially Mrs. Joseph needs
a special mention, which helped me in finding out the patients who suffer from
Alzheimer’s.

v
The next one who actually deserves the acknowledgement is none other than you my
‘appa” and ‘mummy’. The constant care and support that you have provided me, the
prayers that you had for me for giving me more strength to finish this dissertation
without much tensions actually was a strong support for me. The happiness that you
guys had shared with me was actually a catalyst for me to finish this dissertation.
Love you so much my appa and mummy for their constant encouragement and
providing me with emotional support throughout the process of this research. Kunji,
even though you are my younger sister, your love for me made you more elder. Thank
you so much for making me happy with your jokes and giving me so much of
relaxation during the process.
I also express my gratitude to Mr. Rahul Puthanveedan, who helped me in writing the
research and for giving me valuable comments and suggestion to go about it. Mr.
Ismail Parakadavu, you had also given your time for me by helping me in the process.
My heartfelt thanks for you too.
Shradha, Aswati, Anupa, Surjith and Nideeshettan my lots of love filled gratitude to
you for simply being my friend, for understanding me so well and being the persons I
always connected with by sharing everything with you guys. Thank you so much for
the motivation, companionship and the support that you had provided throughout my
research process.
Jo, I cannot write this acknowledgment without mentioning your name. You were a
great mental support for me for finishing this research. You had helped me a lot with
your technical abilities by making all the conceptual maps and frameworks for me.
And also thanks for patiently listening to me.
I am deeply indebted to the support of staff and members of the Institute’s library for
their constant support throughout the journey of this research.
At last, but not at least I am thanking my eternal father, Jesus Christ for giving me his
love, support, care and many more. You are the main reason why I finish this thesis;
your words were my inspiration, your care for me was my greatest strength.
March 2015 Elizabeth Soby

vi
ABBREVIATIONS
AD Alzheimer’s disease
ADL Activities of Daily Living
IADL Instrumental Activities of Daily living
ARDSI Alzheimer’s and Related Disorders Society of India
ADRD Alzheimer’s Disease and other Related Disorders
WHO World Health Organization

vii
CONTENTS
1. Introduction………………………………………………………………...1
2. Literature Review…………………………………………………………...6
2.1 Types of Dementia……………………………………………………...9
2.2 Alzheimer’s……………………………………………………………..9
2.3 Risk Factors of Alzheimer’s disease……………………………………12
2.4 Global Burden of Alzheimer’s disease………………………………….14
2.5 Indian Statistics and Future Projections……………………………….. 15
2.6 Care giving and Dementia………………………………………………17
2.7 Models of Care giving…………………………………………………..21
2.8 Informal Care givers…………………………………………………….23
2.9 Effects of Dementia on Care giving…………………………………….24
2.10 Support Systems……………………………………………………….27
3. Research Methodology…………………………………………………….. 33
3.1 Rational Of the Problem……………………………………………….. 34
3.2 Objectives……………………………………………………………….35
3.3 Research Questions……………………………………………………..35
3.4 Research Design……………………………………………………….. 36
3.5 Sampling Design………………………………………………………..36
3.6 Inclusion Criteria………………………………………………………..37
3.7 Exclusion Criteria ………………………………………………………37
3.8 Sampling Size……………………………………………………………38
3.9 Data Collection…………………………………………………………. 38
3.10 Location of the Study…………………………………………………..38
3.11 Ethical Considerations………………………………………………….39
3.12 Limitations of the Study………………………………………………. 39
4. Care giver and Care giving…………………………………………………..42
4.1 Profile of the Participants………………………………………………..42
4.2 Becoming a Care Giver………………………………………………….45

viii
4.3 Dimensions of Care Giving………………………………………………47
4.4 Changes in the Role………………………………………………………53
5. Care giving: A challenging Coin……………………………………………57
5.1 Awareness and Care giving……………………….……………………57
5.2 Socialization……………………………………………………………59
5.3 Constant Care for the patients by Care giver…………………………..61
5.4 Financial Challenges……………………………………………………62
5.5 Personal Challenges……………………………………………………65
5.6 Emotions and Care giving………………………………………………67
5.7 Physical Health…………………………………………………………72
6. Support systems………………………………………………………………74
7. Conclusion……………………………………………………………………78
8. Future Directions………………………………………………………….…80
9. Appendixes
9.1 References………………………………………………………………xi
9.2 Interview Guide…………………………………………………………xiv

ix
List of Figures
Figure Number Name Page
Number
Figure 1 Symptom progression in Alzheimer's
disease
12
Figure 2 Estimation of number of people with
dementia over 60 years in India between
2000 and 2050
17
Figure 3 Poulshock and Dimling model of
caregiver strain
22
Figure 4 Pearlin et al model of caregiver strain 23
Figure 5 Conceptual Framework 30
Figure 6 Relationship of the Caregiver with the
Alzheimer's Patient
44

x
To all the people who suffer from Alzheimer’s disease and their loving
care givers for the never ending love and care

xi
I shall do my best beloved,
To do all you’ve asked of me.
When I fail you must forgive me,
For where you are I cannot see.
What I know is that I love you,
More than the world can ever know.
Yet, so often I fail to show it,
I’m so ashamed that this be so.
Please forgive me for my failings,
It is not for lack of trying.
I know you need me to be strong,
But it’s so hard when I am crying.
I, too, need you so much my darling,
Until we’re renewed in heaven above.
Your smiles reward and give me courage,
Our hugs and kisses seal our love.
- Albert Reinsch

1
INTRODUCTION
Population aging is a phenomenon that has attracted the attention of the whole world in recent
years. There has been a demographic transition as the result of increase in life expectancy and
relatively reduced birth rate. This in turn has lead to the rise of the old age population in the most
of the developing countries. According to WHO report 2001, there will be more than 800 million
people over 65 years of age in the world by 2025, two-third of whom will be in developing
countries.
With increase in the elderly population, there has been a corresponding increase in the number of
elderly population with health problems. Old age has variously been referred to as, the ‘end of
life’, ‘life’s evening’ and ‘sailing into sunset’. It is also largely termed as the period of
dependence where health problems and loss of one’s faculties make it necessary to be cared for.
As dementia is basically a disease that happens during ones old age, it has been a concern for
gerontologists in the country. No medically acceptable treatment is available for dementia and
any types of dementia. With a rapid growth in the rate of the elderly population, the prevalence of
dementia is increasing in the country.
The world over, a large number of people suffer from dementia. There are different types of
dementia like Alzheimer’s, mild cognitive impairment, Vascular dementia, mixed dementia,
dementia with lewy bodies, Parkinson’s disease and frontotemporal dementia, One major type of
dementia is Alzheimer’s. Alzheimer’s disease is generally referred to as a progressive
degenerative and irreversible form of dementia. The brain is said to change as a result of
shrinkage, tangles and plaques. Consequently, the patients who are affected by the disease cannot
think, remember or understood in a normal manner. Alzheimer’s disease robs the memory and
thinking and the sense of self from the victim leaving behind the shell of body. The person
affected may forget the familiar objects, names, or get lost in familiar place.

2
The cause and cure of dementia of the Alzheimer's type are unknown, but the devastation of the
disease is known: progressive, irreversible brain damage, beginning with gradual memory loss,
leaving its victims completely dependent. The burden of care usually falls upon families who
may be caregivers for many years.
Currently 18 million people in the world suffer from dementia and 66% of these population lives
in developing countries. Of these, Alzheimer’s disease accounts for 50-60% of all cases and it is
the most common type of dementia. (Pai, 2002). Alzheimer’s disease and other dementias are the
main reasons for need of care giving at home and for permanent institutional care, and, therefore,
they are among the most expensive diseases for our society (A. Gustavsson, M. Svensson, 2011).
According to the Dementia India Report 2010, it is estimated that over 3.7 million people
are affected by dementia in our country (2.1 million women and 1.5 million men).This is
expected to double by 2030. In India, one in 20 people over 60 years of age and five in over
80 years age are suffering from AD (Alzheimer’s Disease).With the population of elderly
people in our country increasing, prevalence of AD is also going to increase.
A study conducted in Kerala found that the prevalence of dementia was 33.6 per1000 in Kerala
and Alzheimer’s disease is the most common type which constitutes the 54%. Alzheimer’s is an
important health problem of the elderly population in Kerala.
As the world population ages, enormous resources will be required to adequately care for persons
afflicted with Alzheimer’s disease. Care giving is an important fact in the case of the Alzheimer’s
disease. Care giving and caregivers of Alzheimer’s is a chief issue that becoming the area of
concern. Studies show that the care giver of Alzheimer’s suffers from lots of burden and stress.
But at the same time there are studies from the west shows that caregivers of the Alzheimer’s
demonstrated a significant improvement on the Caregiver knowledge, an increased awareness of

3
community-based services, increased willingness to attend support groups, and its find that all
these services had provided overall satisfaction with this entire program.
The situation in India is not the same. Care giving and caregivers of Alzheimer’s is a chief issue
that becoming the area of concern. . In India, majority of the person suffering from Alzheimer’s
are cared by family members at home. The disintegration of the joint or extended families into
nuclear one has had an adverse impact on the system of shared support and care for the elderly. It
is the small family and the family care givers who are aware about the impact of Alzheimer’s
disease and struggle with the mental deterioration of their relatives. In the Indian scenario, the
lack of support system also adds to the burden of the caregiver.
There are several reasons why they take up the role of care giving. This includes the family
pressure from other family members, giving care as reciprocity, as a medium of accomplishment
and so on. As the disease progress the patient is having difficulties in dealing with simple daily
living activities. The care of a person with Alzheimer’s including a range of duties from daily
management to handling incontinence. People who suffer from Alzheimer’s have negative effects
on everyday functioning of persons suffering from this disease. The ability to perform daily
living activities is affected because the performance of ADL depends on the memory functions.
In the initial stages of the illness, care giving involves only partial assistance, but as the illness
progress the assistance required for ADL increases and involves 24 hour demanding care.
Being a care giver of an Alzheimer’s patient will make the caregiver to play multiple new roles.
The care giver is also started to handle different areas that are new to them. This also increases
the tension and stress of the caregivers.
It demands twenty four hour care from the care giver in each and every domain. So caring for a
person with Alzheimer’s is different from giving care for a normal patient. There are several
challenges associated with the care giving. The main challenges that an informal caregiver faces
during the care giving are about the socialization pattern of the care giver where the caregiver is

4
isolated from all the social functions and social gatherings. Another area of challenge is the
constant and demanding care that the care givers are giving for the patients with Alzheimer’s.
The care givers have to give care in all the areas staring from activities of daily living. This is a
major challenge for them. Handling them is also a challenge that are facing. Health is an
important area, where the psychological or mental health and the physical health of the care giver
is in a question mark. Care giving for an Alzheimer’s patient is a stressful task and that will affect
the care givers health. There are studies which show the negative relationship with care giving
and the health of the caregivers. Financial challenges are also seen among the care givers. Even
the situations made the caregivers gave up the job that they have to take care of the Alzheimer’s
patient. Caring for a person with Alzheimer’s also has significant financial implications among
the family members, especially the care giver.
Family caregivers of persons with Alzheimer’s is often called as the invisible second patients, are
critical to the quality of life of the care recipients. The effects of being a family care giver are
generally negative with high rates of burden and psychological morbidity as well as social
isolation, physical illhealth, and financial hardship.
The anticipation that the condition of a person going is going worsen as the disease progress adds
to the negative impact of providing care. The care givers physical and mental health is adversely
affected as a result of the round – the – clock demanding physical care that increases as the
disease progresses. Studies in India shows that the burden and stress of care giving is high but the
care givers in India are not using too much of support mechanisms that are available or the care
givers are unaware about all those programmes that help them in reducing the burden. Caring for
people with dementia is a time-consuming responsibility, and often requires caregivers to forget
other activities, such as work and time with family and friends. (National academy on an aging
society, 2000)

5
Care giving for Alzheimer's patients is often extremely taxing and exhausting. The caregiver
(usually the spouse or adult daughter) often faces the prospect of social isolation; lack of time for
self, family, and friends; career interruptions; financial drain; and unrelieved heavy physical
labour in care giving ( Archbold, 1982; Brody & Lang, 1982). These and other problems
contribute to a subjective sense of burden experienced by many caregivers. Besides, many
families are also burdened by the financial expenses of the treatment.
This research tries to explore the issues related to the care of persons with Alzheimer’s and also
generally focused on family care givers as they are the primary provider of care.
This study focuses on the experience of the care givers of Alzheimer’s patients and other burden
and stress related to care giving. Study looks at understanding about the care giving activities that
the caregivers are engaged in. This study also tries to understand the perception of the care giver
about the care giving and also look at the life of the care giver before and after being a caregiver.
This study also throws insight about the profound effect of the care giving in the physical,
emotional and mental health of the care givers of Alzheimer’s patient.

7
It is estimated that over 3.7 million people are affected by dementia in our country. This is
expected to double by 2030. It is estimated that the cost of taking care of a person with Dementia
is about 43,000 annually; much of which is met by the families.(Dementia India Report,2010)
The world’s population is ageing. It is estimated that by 2050 the world population over the age
of 60 will be 2 billion (World Population Ageing, 2009) Improvements in health care in the past
century have contributed to people living longer and healthier lives. However, this has also
resulted in an increase in the number of people with non communicable diseases, including
dementia. Although dementia mainly affects older people, it is not a normal part of ageing.
Dementia is a syndrome, usually of a chronic or progressive nature, caused by a variety of brain
illnesses that affect memory, thinking, behaviour and ability to perform every day activities.
Dementia: A silent Epidemic
Dementia has been defined as “an acquired syndrome of intellectual impairment produced by
brain dysfunction…which compromise in at least three of the following spheres of mental
activity: language, memory, visiospatial skills, emotion or personality and cognition”
Cummings,1992) Dementia may be distinguished from other forms of cognitive impairment by
its persistent, progressive and often irreversible deterioration. In general, dementia involves three
main type of symptoms: losses in cognitive capacities, difficulties in performing instrumental and
personal activities of daily living and changes in mood or personality and decrease in
interpersonal functioning (Le Navence & Vonhof, 1996).
According to Alzheimer’s association, Dementia is a general term for a decline in mental ability
severe enough to interfere with daily life. Dementia is not a specific disease. It's an overall term
that describes a wide range of symptoms associated with a decline in memory or other thinking
skills severe enough to reduce a person's ability to perform everyday activities. “Dementia is a
clinical syndrome characterised by a cluster of symptoms and signs manifested by difficulties in
memory, disturbances in language, psychological and psychiatric changes, and impairments in

8
activities of daily living.”(Alistair Burns,Ste ve Iliffe 2009) About 12 million people worldwide
have dementia, and this total is likely to increase to 25 million by 2040.
Dementia is a syndrome due to disease of the brain – usually of a chronic or progressive nature –
in which there is disturbance of multiple higher cortical functions, including memory, thinking,
orientation, comprehension, calculation, learning capacity, language, and judgement.
Consciousness is not clouded. The impairments of cognitive function are commonly
accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour,
or motivation. This syndrome occurs in a large number of conditions primarily or secondarily
affecting the brain.( Dementia a public health priority, WHO, 2012).
All types of dementia involve mental decline that:
• occurred from a higher level (for example, the person didn’t always have a poor memory)
• is severe enough to interfere with usual activities and daily life
• affects more than one of the following four core mental abilities
• recent memory (the ability to learn and recall new information)
• language (the ability to write or speak, or to understand written or spoken words)
• Visuo spatial function (the ability to understand and use symbols, maps, etc., and the
brain’s ability to translate visual signals into a correct impression of where objects are in
space)
• executive function (the ability to plan, reason, solve problems and focus on a task)
According to WHO 35.6 million people were estimated to be living with dementia in 2010. There
are 7.7 million new cases of dementia each year, implying that there is a new case of dementia
somewhere in the world every four seconds.

9
2.1 TYPES OF DEMENTIA
Dementia as a category can be further divided into reversible and irreversible types (Kaplan,
1996). Reversible dementia may be caused by factors including reactions to medications,
depression, brain tumours, environmental toxins, nutritional deficiencies, infections and other
metabolic disorders. Irreversible dementia is caused by the factors including Alzheimer’s,
vascular disease, Parkinson disease and genetic background (Kaplan, 1996). Other causes of
dementia include cardiopulmonary disorders, hepatic disturbances, renal failure and chronic
excessive use of alcohol or other substances (Cummings, 1995).
The diagnostic and statistical manual of the American Psychiatric Association(1994) defines
Alzheimer’s disease as the most common cause of dementia . In fact Alzheimer’s disease
accounts for between 75- 85% of all the cases of dementia among the elderly persons (Hopkins
and Hopkins, 2002).
The other types of dementia include:
 Vascular dementia
 Lewy Dementia
 Frontotemporal dementia
 Mixed dementia
2.3 ALZHEIMERS
Alzheimer's disease (AD) is one of the most widely known of the organic mental disorders
described as dementias. After the onset of AD, the progress of the illness results in declining
levels of functioning and increased dependency for patients, factors linked to higher needs for
care. (Global Health and Aging, 2011). Discovered in the late 19th
century, Alzheimer’s is a
progressive degenerative disorder, insidious in onset, followed by gradual deterioration and death

10
(Cummings, 1995). Historical hallmarks of Alzheimer’s include neuronal loss, neurofibrillary
tangles and the production of neurotic plaques, leading to neuronal toxicity and cell death
(Cummings, 1995).
Although the symptoms of Alzheimer’s vary, the first problem many people with Alzheimer’s
notice is forgetfulness severe enough to affect their work, lifelong hobbies or social life. Other
symptoms include confusion, trouble with organizing and expressing thoughts, misplacing things,
getting lost in familiar places, and changes in personality and behaviour. Alzheimer’s disease
affects people in different ways. The most common initial symptom is a gradually worsening
ability to remember new information. This occurs because the first neurons to malfunction and
die are usually neurons in brain regions involved in forming new memories. As neurons in other
parts of the brain malfunction and die, individuals experience other difficulties. The following are
common symptoms of Alzheimer’s:
• Memory loss that disrupts daily life.
• Challenges in planning or solving problems.
• Difficulty completing familiar tasks at home, at work or at leisure.
• Confusion with time or place.
• Trouble understanding visual images and spatial relationships.
• New problems with words in speaking or writing.
• Misplacing things and losing the ability to retrace steps.
• Decreased or poor judgment.
• Withdrawal from work or social activities.
• Changes in mood and personality, including apathy and depression.
These symptoms result from damage to the brain’s nerve cells. The disease gradually gets worse
as more cells are damaged and destroyed. Scientists do not yet know why brain cells malfunction
and die, but two prime suspects are abnormal microscopic structures called plaques and tangles.

11
Alzheimer's is a type of dementia that causes problems with memory, thinking and behaviour.
Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere
with daily tasks. Alzheimer’s is the most common form of dementia, a general term for memory
loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer's disease
accounts for 50 to 80 percent of dementia cases. Alzheimer’s is not a normal part of aging,
although the greatest known risk factor is increasing age, and the majority of people with
Alzheimer's are 65 and older. But Alzheimer's is not just a disease of old age. Up to 5 percent of
people with the disease have early onset Alzheimer's (also known as younger-onset), which often
appears when someone is in their 40s or 50s. (Alzheimer’s Association, 2012)
Individual’s progress through Alzheimer’s at different rates. As they pass through different stages
of the disease, individuals’ cognitive and functional abilities decline. In the final, advanced stage
of the disease, people need help with basic activities of daily living, such as bathing, dressing,
eating and using the bathroom; lose their ability to communicate; fail to recognize loved ones;
and become bed-bound and reliant on around-the-clock care. When individuals have difficulty
moving, they are more vulnerable to infections, including pneumonia .(Aging and Society, 2011).

12
Figure 1: Symptom progression in Alzheimer's disease. Adapted from Feldman and
Woodward (2006)
2.3 RISK FACTORS FOR ALZHEIMER’S DISEASE
It is very important to understand the risk factors for dementia before planning interventions.
Risk factors can be divided as potentially modifiable and non modifiable risk factors. In addition,
there are various protective mechanisms that have come to light. (Hopkins and Hopkins,
2002).Understanding the potentially modifiable risk factors would help in selecting the
management strategies. Understanding the non modifiable risk factors would help in identifying
high risk groups and planning targeted interventions. (Schulz R, Beach SR, 1999)

13
2.3.1 Non modifiable risk factors:
The main risk factor for most forms of dementia is advancing age, with prevalence roughly
doubling every five years over the age of 65yrs. Onset before this age is very unusual and, in the
case of Alzheimer’s disease often suggests a genetic cause. For late-onset Alzheimer’s disease
both environmental (lifestyle) and genetic factors are important.
Evidence from cross-sectional and case-control studies suggest associations between AD and
limited education, and head injury (Mortimer et al, 1991; Mayeux et al, 1995), which, however,
are only partly supported by longitudinal (follow-up) studies. Depression identified as a risk
factor in short term longitudinal studies, may be an early presenting symptom, rather than a cause
of dementia. Elderly individuals with genetic vulnerability and family history of dementia in first
degree relatives (especially of the early onset type) are high risk groups for dementia. In addition,
people who have had chronic depression in their earlier life and head injuries are known to be at
higher risk and so should be watched for memory problems in later life.( Schulz R, Beach
SR,1999).
2.3.2 Potentially modifiable risk factors - vascular risk factors and cardiovascular disease
Despite occasional negative findings from large prospective studies (Yip et al, 2006; Bursi et al,
2006) , the accumulated evidence for a causal role for cardiovascular risk factors (CVRF) and
cardiovascular disease (CVD) in the etiology of dementia and Alzheimer’s Disease is very strong.
Short (Ott et al, 1998; Juan et al, 2004; Luchsinger et al, 2005) and long duration (Tyas et al,
2003; Whitmer et al, 2005) incidence studies suggest that smoking increases the risk of
Alzheimer’s disease. Long term cohort studies indicate midlife hypertension and
hypercholesterolemia are associated with Alzheimer’s disease onset in later life. Those with high

14
cardiovascular risk scores (incorporating hypertension, diabetes, hypercholesterolemia and
smoking) have an increased risk for dementia incidence, whether exposure is measured in midlife
or a few years before dementia onset. While, diabetes is a recognized risk factor recent studies
report associations between metabolic syndrome and incident cognitive decline, and insulin
resistance and impaired executive function. All these findings have led to the hypothesis that
atherosclerosis and Alzheimer’s disease are linked disease processes, with several common
underlying factors (genetic factors, hypertension, increased fat intake and obesity, raised
cholesterol, diabetes, the metabolic syndrome, smoking and systemic inflammation). The
potential risks posed by diabetes, metabolic syndrome, hypertension and smoking have special
relevance for India and other developing regions.
2.4 GLOBAL BURDEN OF ALZHEIMER’S DISEASE:
Symptoms of Alzheimer’s are perceived differently in different parts of the world. This includes
considering Alzheimer’s as a normal part of ageing, mental illness, something metaphysical
linked to supernatural or spiritual beliefs or as an irreversible disease of the brain. It is very
important that there is better public awareness for the Alzheimer’s. Low levels of understanding
about Alzheimer’s lead to various misconceptions resulting in perpetuation of stigma which is
prevalent in most countries at various levels. People with Alzheimer’s are often isolated, or
hidden, because of stigma or the possibility of negative reactions from neighbours and relatives to
behavioural and psychological symptoms. The idea that nothing can be done to help people with
Alzheimer’s often leads to hopelessness and frustration. Dementia is the main cause of
dependency in older people and we will not have enough people to care for these large numbers
of people with dementia. Globally, less than 1 in 4 people with dementia receive a formal
diagnosis without a diagnosis, few people receive appropriate care, treatment and support.
(Goffman, 1963).

15
In 2006, the worldwide prevalence of Alzheimer's disease was 26.6 million. By 2050, the
prevalence will quadruple, by which time 1 in 85 persons worldwide will be living with the
disease. ( WHO, 2012).
In 2008, the World Health Organization (WHO) declared dementia as a priority condition
through the Mental Health Gap Action Programme. Prevalence and incidence projections indicate
that the number of people with dementia will continue to grow, particularly among the oldest old,
and countries in demographic transition will experience the greatest growth. The total number of
people with dementia worldwide in 2010 is estimated at 35.6 million and is projected to nearly
double every 20 years, to 65.7 million in 2030 and 115.4 million in 2050. The total number of
new cases of dementia each year worldwide is nearly 7.7 million, implying one new case every
four seconds. Much of the increase will be in developing countries, the fastest growth in the
elderly population taking place in China, India, and their south Asian and western Pacific
neighbours. In 2010, Europe had an estimated 10 million disease cases and based on United
Nation’s demographic forecast this figure will rise to 14 million in 2030. Alzheimer disease (AD)
has become a major public health concern as the world’s population ages. It is projected that by
2050, people aged 60 and over will account for 22% of the world’s population with four-fifths
living in Asia, Latin America or Africa.
2.5 INDIAN STATISTICS AND FUTURE PROJECTIONS
India is home to more than 70 million people older than 60 years as per the 2001 Census. This
age group, only 7.5% of the population in 2001, is expected to grow dramatically in the coming
decades. In India, the population of the elderly is growing rapidly and is emerging as a serious
area of concern. The demographic trend in India has been towards an increasing number of
elderly due to the increased life span of the population, in general. According to WHO (World
Health Organization), India’s population of those aged over 65 years ,was 40 million in

16
1997.These figures will increase to 108 million by 2025 and 240 million by 2050 (as cited in
Krishna Kumar 2003). With demographic ageing comes the problem of dementia. The numbers
of persons with dementia double every 5 years of age and so India will have one of the largest
numbers of elders with this problem..It is estimated that over 3.7 million people are affected by
dementia in our country. This is expected to double by 2030. In the last 10 years, the evidence on
dementia prevalence in India has expanded considerably. More than 42,000 older people have
been studied in eight centres across India, and wide variations in estimates exist.
The future projections are estimated based on the assumption that prevalence of dementia is
stable over time; however, this may not be true. If the incidence of dementia or number of older
people with increases escalating life expectancy, eventually the prevalence of dementia will
eventually increase. For example, in India the number of people with AD and other dementias is
increasing every year because of the steady growth in the older population and stable increment
in life expectancy resulting in an estimated increase of twofold by 2030 and threefold by 2050.

17
Figure 2: Estimation of number of people with dementia over 60 years in India between
2000 and 2050 (Source: ARDSI Report, 2012)
2.6 CARE GIVING AND DIMENTIA
Dementia is the disease which needs so much of care. The disease dementia is not only affecting
the patient but also the family members, neighbours and others in the networks of the patient. It
mostly affects the persons who take the primary role in providing care. In most of the cases,
immediate family and family members are the main care givers for the people who cannot live
independently. Alzheimer’s disease is often called a family disease, because the chronic stress of
watching a loved one slowly decline affects everyone. (IPA, 2012). Comprehensive treatment
must therefore address the needs of the entire family. This includes emotional support,
counseling, and educational programs about Alzheimer’s disease for individuals and family

18
members as they strive to provide a safe and comfortable environment at home.(Alzheimer’s
Association, 2000).
Dementia is associated with complex needs and, especially in the later stages, high levels of
dependency and morbidity. These care needs, which include identification, diagnosis and
symptom management as well as long-term support, often challenge the skills and capacity of the
workforce and services. In addition, a substantial proportion of dementia care takes place outside
formal health care settings and is provided by family members. ( Adkins, 1999).To improve the
quality of life of people with dementia and their caregivers, it is essential that the care provided
by health and social care services is coordinated and integrated and can be adapted to the changes
that occur throughout the course of the disease. A care pathway that is responsive to these
changes and includes regular reassessment is key to improving the care of people with
dementia.(Brodaty, 2009).
A dementia care pathway should be embedded in a health system that is resourced with trained
providers who are able to make an accurate diagnosis in a timely and efficient manner, and that
can link people to the provision of appropriate and adequate care as and when required. The
important role of primary care has been neglected until recently. The extent and nature of the
roles of the providers are dependent on the resource level of the health system. (Dementia a
public health priority, WHO, 2012)
The World Alzheimer Report 2009 provides a framework for planning dementia services . It
proposes a range of services reflecting the progressive nature of dementia and for planning
collaboratively with community-based social care and support services.
Countries should develop integrated and coordinated health and social pathways and services to
cater for the changing needs of people with dementia and their caregivers. Such pathways and
services should be inclusive of, and undertaken in collaboration with, specific population groups

19
in order to ensure that their unique needs are identified and addressed. (Dementia a public health
priority, WHO, 2012)
A study led by Johns Hopkins and Utah State University (2001) researchers suggests that a
particularly close relationship with caregivers may give people with Alzheimer's disease a
marked edge over those without one in retaining mind and brain function over time. The
researchers reported that the benefit for the patient in slowing cognitive decline was on a par with
some medications used to treat the disease. It is crucial that the caregiver receive support, not just
for the patient, but also for himself/herself. Care giving for individuals with Alzheimer’s has
received more attention than care giving for any other type of disorder due to the many reasons
The demands and negative impact of the Alzheimer’s are generally said to be higher than non
Alzheimer’s care giving. They experience higher level of strain because they have to bear with
the behavioural problems of the care receiver such as wandering and so on. The impact of the
care giving includes financial, physical and emotional problems. The caregiver’s mental health is
the most adversely affected. Significant care giving problems identified by researchers include
coping with increased needs of the dependent family members, coping with the changed and
disruptive behaviour, restriction on social and leisure activities, conflicting multiple role
demands, lack of support from human service agencies and agency professionals (Kahana et
al,1994)
Shultz (2004) defines the role of care giving as:
“… the provision of extraordinary care, exceeding the bounds of what is normative or usual in
family relationships. Care giving typically involves a significant expenditure of time, energy, and
money over potentially long periods of time; it involves tasks that may be unpleasant and
uncomfortable and are psychologically stressful and physically exhausting”. Care givers face
many obstacles as they balance care giving with other dementias, including house hold work,
child rearing, career and relationships. They are at increased risk of burden, stress, depression and

20
variety of other health complications.(Cassle & Sanders, 2008). The effect on care givers is
diverse and complex, and there are many other factors that may exacerbate or ameliorate how
care givers react and feel as a result of their role. Numerous studies report that caring a person
with dementia is more stressful than caring a person with a physical disability.( Ory et al, 1999).
More than 80% of the Alzheimer’s disease caregivers state that they frequently experience high
level of stress and almost half reported that they suffer from depression (Alzheimer’s
Association, 2006). Dementia caregivers suffer a considerable care burden. More than in
comparable groups of caregivers or peers, they are confronted with feelings of depression and
decreased physical health (Academic Centre of General Practice, Belgium).
Care giving and caregivers of Alzheimer’s is a chief issue that becoming the area of concern. The
disintegration of the joint or extended families into nuclear one has had an adverse impact on the
system of shared support and care for the elderly. It is the small family and the family care givers
who are aware about the impact of Alzheimer’s disease and struggle with the mental deterioration
of their relatives. The care givers physical and mental health is adversely affected as a result of
the round – the – clock demanding physical care that increases as the disease progresses. Besides,
many families are also burdened by the financial expenses of the treatment.
Caring for people with dementia is a time-consuming responsibility, and often requires caregivers
to forget other activities, such as work and time with family and friends. (National academy on an
aging society, 2000). Caring for persons with AD can be a devastating and burdensome
experience (Butcher et al. 2001, Vellone et al. 2002b), and the quality of life for both patients and
their caregivers may be poor (Markowitz et al. 2003, Wlodarczyk et al. 2004). Depression occurs
in one in three of caregivers and it occurs more frequently in those who care for patients with
dementia than in caregivers of patients with other chronic illnesses. Changing role patterns, the
continuous mourning process of the caregiver for a relative with dementia and the uncontrollable

21
nature of the illness render caring for a patient with dementia into an exceptional
situation.(Alzheimer’s Association, 2006)
Although many aspects of care giving can be rewarding, providing care for people with
Alzheimer’s disease is particularly demanding. Caregivers of people with Alzheimer’s disease
and related dementia provide more hours of care and suffer more adverse consequences than
caregivers of people without dementia. ( Report by Alzheimer’s Association USA, 2012)
Care giving for Alzheimer's patients is often extremely taxing and exhausting. The caregiver
(usually the spouse or adult daughter) often faces the prospect of social isolation; lack of time for
self, family, and friends; career interruptions; financial drain; and unrelieved heavy physical
labour in care giving ( Archbold, 1982; Brody & Lang, 1982). These and other problems
contribute to a subjective sense of burden experienced by many caregivers (S. H. Zarit et al.,
1980)
Caregivers are indispensable to persons living with Alzheimer’s disease; however, such care
involves hard work, and the consequences of this activity on caregivers are often neglected.
2.7 MODELS OF CAREGIVING
Two models of factors leading to caregiver stress are useful. These are the two models which are
available. In Poulshock and Deimling model (1985), dementia leads to a burden of care which
can manifest as strain in a number of ways that can be exacerbated (Eg. By behavioural
disturbance, physical or psychological illhealth in caregiver) or ameliorated (eg. By support,
mature coping mechanisams)

22
Figure 3: Poulshock and Dimling model of caregiver strain
Perlin and colleagues (1990) model of caregiver stress outlines four main areas that contribute to
care giver stress outlines four main areas that contribute to caregiver stress: the background
context (such as level of support and impact of other life events),the primary stressors of the
illness (such as the level of help required by the patient and behavioural and psychological
problems in dementia), secondary role strains(such as family conflict and social life), and intra
psychic strains such as personality , competence and role captivity of the caregiver.

23
Figure 4: Pearlin et al model of caregiver strain
In Campbell and colleagues review of the model, the strongest predictors of caregiver burden
were sense of ‘role captivity’ (career feeling of being trapped in their role), caregiver overload
like burnout, adverse life events outside of the care giving role and relationship quality.
2.8 INFORMAL CARE GIVERS:
Caring for a family member with Alzheimer’s disease and related dementias (ADRD) is one of
the most devastating and challenging experiences one can endure. ADRD are tragic, debilitating,
chronic illnesses with unpredictable clinical courses that average nearly 10 years from diagnosis

24
to death (Alzheimer’s Association, 1996; National Advisory Council on Alzheimer’s Disease,
1989). Approximately 70% of persons with ADRD, or more than 4 million persons, live at home
and are cared for by a family member without pay (Alzheimer’s Association, 1996; Taueber,
1992).There are an estimated 30 million people with dementia worldwide currently, and this
figure is likely to double every 20 years. People with dementia generally require high levels of
care, most of which is provided by informal or family caregivers. Without caregivers, people with
dementia would have a poorer quality of life and would need institutional care more quickly, and
national economies would be swept away by the advancing demographic tidal wave. However,
this support comes at a cost of caregiver distress and poorer quality of life.
Members of the family are the main care givers for the dementia patients, such as spouse, adult
children, daughters- and sons-in-law, friends, neighbours. All these people are defined as part of
the relationship with the patient. Care givers from family are playing a major role in care giving.
They will be mostly engaged with the ‘hand down’ experience of care giving. They also integrate
the care that is dispatched by others too. Primary care givers are “persons, who spent most of the
time with the person with dementia”, and secondary caregivers, are those family and friends who
“play a supplementary role to the care of a relative” .Caring for a family member living at home
with ADRD was experienced as “being immersed in care giving; enduring stress and frustration;
suffering through the losses; integrating ADRD into our lives and preserving integrity; gathering
support; moving with continuous change; and finding meaning and joy.”(Butcher, Holkup,2001).
2.9 EFFECTS OF DEMENTIA ON CARE GIVING
Alzheimer's disease is a family disease as the caregiver is involved in a progressively more active
role as caregiver to a person who does not get better but who will require continuous physical
care and increasing emotional support as they deteriorate both mentally and eventually

25
physically. During this process of deterioration, which is also referred as "the never ending
funeral", the caregivers face a lot of emotional grief in terms of seeing a loved one depreciates in
this manner.(Brodaty,2006)
Elizabeth Kubler Ross(1996) , in her work " On death and Dying" talks about five stages of
grieving process which are denial and isolation, anger, bargaining, depression, and acceptance(
Powell & Courtice ,1993,p 29, Teusink & Mahler , 1984, p.156). All these are the steps that come
under care giving.
Alzheimer's disease has a deep psychological impact on the caregivers of the patients. In the early
stages the family goes in a denial and often expresses the hope that the diagnosis is a mistake.
This hope keeps them protected against the cruel reality of the disease. However if this denial
persists for a long time then the caregiver might have problems in adjustment and coping later on.
The family also suffers from a sense of loss as they see one of a very significant member of their
family gradually losing mental, physical and social abilities Feelings of frustration are common
because the caregiver feels powerless against the disease as he/she is unable to neither cure it nor
stop its progression. Because the disease has an unknown etiology and affects each person
differently, families often experience a great deal of fear Caregivers may fear the behavioural and
financial problems that lie ahead and children are concerned that the disease may be hereditary
(Gwyther, 1982)
With the progression of the disease, the patient becomes increasingly dependent and there arises
issues of role adjustment m the family (Lezak, 1978) Previously simple tasks like money
management, cooking, driving become difficult for the Alzheimer's patient and must therefore be
turned over to the caregivers, other family members or attendant Gradually, patient begins
exhibiting many behavioural problems as a result of memory loss. Repetitive questioning,
wandering, forgetfulness, paranoia, and sometimes violence are common manifestation of the
disease ( Mace ,1981). This behaviour as well as the change in familial roles often cause anger

26
and resentment and followed by guilt. Caregivers often suffer from unresolved guilt when they
begin considering the possibility of placing a loved one in a nursing facility.
During the later stages of the disease the Alzheimer's patient become totally incapacitated. At this
time, families may go through a grieving period in which they mourn the loss of a loved one
However, because the patient is still living , Family members have to seek permission to grieve
the loss of a personal relationship that no more exists (Mac,1981).
Family caregivers of people with dementia, often called the invisible second patients, are critical
to the quality of life of the care recipients. The effects of being a family caregiver, though
sometimes positive, are generally negative, with high rates of burden and psychological
morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers
vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate
burden and strain.
Social isolation is an often overlooked side-effect of having a loved-one who has been diagnosed
with Alzheimer's disease. Care givers often lack social contact and support and experience
feeling of social isolation.(National Alliance for care giving,2004) . Caregivers tend to sacrifice
their leisure activities and hobbies, to restrict time with family and friends and to give up or
reduce employment. (Moares and Silva, 2009). Care givers who are most satisfied with their
social interactions shows fewer negative psychological symptoms.( National Alliance for care
giving,2004).
There might arise financial and legal problems as the patient might not be able to sign cheques or
pay bills or drawing up a will etc. There will be financial problems in case the patient was the
sole breadwinner of the family and also in later stages of the disease there might be an increased
financial burden due to medical treatment
According to Lezak (1978) throughout the course of the disease, caregivers often experience
depression, isolation and physical deterioration. The caregiver might also start feeling

27
emotionally exhausted with continual care of the patient without any positive changes or breaks.
He/she might be unable to maintain outside interactions because of the demand for 24 hours care,
which will leave him/her isolated from the rest of the world
Family caregivers of people with dementia are exceptionally prone to affective disorders such as
major depression and anxiety disorder (Cullpers, 2005).
Even though the term stress has been used since 1930s, it is described as a state of imbalance
within an organism that is elicited by an actual or perceived disparity between environmental
demands and the organism’s capacity to cope with these demands (Caplan,1981).
According to the transactional model of stress, Lazarus and Folkman’s interpretation of stress
focuses on the transaction between people and their external environment (known as the
Transactional Model). The model conceptualizes stress as a result of how a stressor is appraised
and how a person appraises his/her resources to cope with the stressor. The model breaks the
stressor-stress link by proposing that if stressors are perceived as positive or challenging rather
than a threat, and if the stressed person is confident that he/she possesses adequate rather than
deficient coping strategies, stress may not necessarily follow the presence of a potential stressor.
The model proposes that stress can be reduced by helping stressed people change their
perceptions of stressors, providing them with strategies to help them cope and improving their
confidence in their ability to do so.
2.10 SUPPORT SYSTEMS
Support can come in the form of instrumental support (helping with daily living needs and
housework), emotional support, and informational support (information and knowledge from both
health professionals and from those who have experienced similar situations). A positive
relationship between social support and psychological well-being has generally been found in all
the cases. Support provides a buffer against burden and stress for caregivers by increasing the
perception that resources are available to handle stress.87.The relationship is complex. There are

28
differences between actual and perceived support, formal and informal support, and instrumental
and emotional support. There are both formal and informal support systems.
Nursing home admissions of the patient and Alzheimer’s associations are kind of formal support
system that the care givers are having.
Care givers tend to use the formal community support services at a later stage. The problem with
the services can also be attributed to difficulties in accessing the support services. Bruce and
Paterson (2000) found that patients were often referred late for community care, or with other
formal services, despite the fact that the caregivers had the difficulties. Pharmacotherapy,
Memory clinics, communication interventions are type of formal support systems for the
caregivers.
Study conducted by Morgey (1999) states that the care givers always tend to rely on the informal
support and services and later on to the formal services. Informal services include family
members, friends and neighbours. In many conditions, formal support is negligible, unavailable
or unused (Mogey, 1999; Stoller,1999). When in informal support re available, caregivers tend to
avoid using the formal support system (Montgomery & Borgatta, 1999). The reliance on the
informal support resources often reflects a strong sense of familial responsibility related to guilt,
devotion or affection and a rejection to take the support from outside.( Hooyman, 1986). Spousal
caregivers see the care giving s part of their marital relationship and refuses to accept formal
assistance. (Barusch, 1988).
Informal support may be instrumental or socio emotional. Instrumental informal support is
defined as “informal hands – on assistance with the patient and informal assistance with the
household chores and logistics” (Aneshensel, 1995). Instrumental support is the support with the
physical tasks of providing care. Socio emotional support generally refers to the emotional
support and encouragement that the caregivers are receiving from others and can also include the

29
availability of the individuals to talk to who understand, caring and trustworthy. (Aneshensel,
1995).
In general, the caregivers actually need a strong support system to continue with the task of care
giving. Support system will help the caregivers to cope with the care giving task and challenges.

30
Figure 5: Conceptual Framework

31
Explanation of Theoretical frame work
A conceptual map is a diagrammatic representation of one’s concept of research. From the
diagram, one can infer the various linkages and variables involved in the study. This map gave
researcher more conceptual clarity and also provided direction for the successful completion of
research. This also will act as a guide for people to understand the gist of the research. Here is the
theoretical frame work which has been evolved from the literature.
From the above conceptual map, it is visible that the family is prior to the onset of the
Alzheimer’s disease. The family is inclusive of the Alzheimer’s patient, the caregivers and also
the other members of the family. In the beginning the family members are playing their own role
by performing their own activities according to the desired roles. As a family member takes up
the role of caregiver get demarcated and rearranged and will also taking up several new other
roles along with it.
The family is divided into three which include patient, caregiver and the other members in the
family. But when once the disease attacks any person in the family the patient will goes through
several changes. The patient will be having several changes in accordance with the Alzheimer’s
disease. Those changes include memory loss, difficulty in taking decisions, mood changes,
personality changes like being aggressive and difficulty in performing daily living activities. This
has a direct impact on the caregiver mainly in three domains. They are the social impact,
economic impact and the psychological/ emotional impact.
Social impact includes less social engagement due to care giving tasks and round the clock
caring. Lack of leisure activities, social contacts and participation in social events is also a part of
this. Lack of social relations, lack of friends and sacrificed leisure activities is also a part of the
burden and stress that the caregiver is going through.

32
Psychological impact or emotional impact includes the stress, burn out; depression and loneliness
are the main areas of concern. Additional stress is arising among the care givers as a part of care
giving.
The economic impact means the loss of job or career, voluntary retirement by the care giver, the
monetary cost that the care givers and the family spending on care giving of Alzheimer’s patient,
medical charges, additional expenses and also the material loss that happens as part of the disease
condition.
The other family members will act as a support system for the caregiver. The support will be
emotional, physical or financial.
Thus the conceptual map shows and defines the main three areas of challenges that directly affect
the caregiver as taking up the role of care giving.

34
3.1 RATIONAL OF THE PROBLEM
Alzheimer's disease is a degenerative process in the brain that produces intellectual impairment in
over 3.7 million Indian adults .( ARDSI Report 2010) It is the most common cause of senile
dementia which is the severe, irreversible intellectual impairment in older adults (Gwyther &
Matteson, 1983). The incidence of the illness increases with age and it is estimated that 20% of
people over 80 have this disease (Gwyther & Matteson, 1983) .
In the words of Current Director general of WHO, Margaret Chan (2012) , “Estimates indicate
35.6 million people worldwide are living with dementia. This number will be double by 2030 and
more than triple by 2050. Dementia doesn’t just affect individuals. It also affects and changes the
lives of family members. Dementia is a costly condition in its social, economic, and health
dimensions. Nearly 60 percent of the burden of dementia is concentrated in low- and middle-
income countries and this is likely to increase in coming years.”
In 2010, there are 3.7 million Indians with dementia and the total societal costs is about 14,700
crore. It is estimated that over 3.7 million people are affected by dementia in our country. This is
expected to double by 2030. ( ARDSI Report 2010).
According to a study conducted by US National Library of Medicine and National Institutes of
Health states that, in Kerala Prevalence of dementia was 33.6 per 1000 and Alzheimer’s disease
was the most common type (54%).So Alzheimer’s is an emerging health concern in Kerala.
Care giving of Alzheimer’s patients is mostly the duty of the family members. Families are the
main care givers and they need support ( ARDSI Report 2010). The main informal care givers of
Dementia patients are family members. (Dementia, 3rd
edition, David Ames, Alistair Burns, John
O'Brien, 2005). Most Alzheimer’s patients relay on the family support system for providing

35
essential and intense care. (Clara C. Pratt, Vicki L. Schma, 1985 p27) Family caregivers of
patients with Alzheimer's disease (AD) commonly have high levels of psychological distress.
(Haley, William E.; Roth, David,1996 p121). Family members, often at great personal cost,
provide much of the care for older adults with Alzheimer’s disease and other dementias in the
community (Mary S. Mittelman, Dr.P.H.; David,2004)
In this context, this is a research to identify the experience of care giving by family for the
persons with Alzheimer’s. The study includes the various care giving activities that the caregiver
are engaged and also the caregiver’s perception about care giving. The study is looking at the
whole experience of a caregiver before and after being a care giver. It also looks at the support
systems that the care giver have. The study is focused on identifying the experience of family
care givers of persons with Alzheimer’s.
3.2 OBJECTIVES:
 To identify the various care giving activities and the practices that the care givers are
engaged in.
 To study the challenges of care giving as experienced by caregivers.
 To explore the factors that supports the care givers
3.3 RESEARCH QUESTIONS
 What are the actions that the care takers are engaged for giving care for the people with
Alzheimer’s patients?
 Which are the areas in which the Alzheimer’s patient needs constant help form the care
givers?
 What are the experiences that encountered while providing care for the Alzheimer
patient?

36
 How the care taker perceives his/her life as a caregiver?
 What are the socialization patterns of care givers?
 What are the main problems, oppositions and challenges that the care takers are facing?
 What are the formal and informal factors that support the care giver while care giving?
3.4 RESEARCH DESIGN
Research design helps to find out how best can the researchers obtain information from persons
who are the primary source of the data. ( Ramachandran.P, 1993. Researcher used a qualitative
research design for the study. This is the method of choice when straight descriptions of
phenomena are desired and when the goal of the study is a complete understanding of events or
experiences in the terms of everyday. ( Sandelowski, 2000). Qualitative research is conducted to
understand the context or settings in which participants in a study address a problem or an issue.
It’s also conducted to have a detailed understanding of the issue. ( Creswell.J, 2007)
Any social study needs to be clear about the standpoint from which a phenomenon or reality is
being looked at. These are known as “approaches to inquiry” (Creswell 2006) which provide the
researcher with a structure or framework to follow during the course of inquiry. The researcher
used a phenomenological study. A phenomenological study describes the meaning for several
individuals of their lived experiences of a concept or a phenomenon. (Creswell, 2006).
3.5 SAMPLING DESIGN
Sampling design helps the researcher to select the persons to collect the necessary information
regarding the research and who are eligible to be selected for the collection of data. (
Ramachandran.P, 1993).
Researcher used Purposive sampling to identify the care givers of Alzheimer’s patients. In this
sampling method the researcher purposely chose persons who have appropriate characteristics

37
requires for the sample members and who are relevant to the research topic and are easily
available to the researcher. ( Ahuja, Ram, 2001) .In purposive sampling the participants are
essentially chosen for their expertise , thus ensuring the richness of the information gathered.
(Morse ,1994).
As the target group of the research was not that visible, initially it was difficult to find out the
participants of the study. There is not much awareness about the disease and often the disease is
mistaken to be the usual course of ageing. For the purpose of identifying the target group the
researcher first identified the organization ARDSI, working for the people with Alzheimer’s.
From ARDSI, the researcher collected the details of some people who suffer from Alzheimer’s
who is not coming to ARDSI.
3.6 INCLUSION CRITERIA:
 The patient must be medically diagnosed of suffering from Alzheimer’s disease
 The caregiver must be a relative of the person suffering from Alzheimer’s
 The caregiver must be living with the patient in the same house.
 The caregiver must be performing the task of care giving at least for last six months.
 The patient must be alive at the time of interview with the caregiver i.e. study cannot be
done on the caregivers of the patients who are not alive.
3.7 EXCLUSION CRITERIA:
 Care giver of the patients who are staying in residential homes.
 Caregiver who is not the relative of the patient.

38
3.8 SAMPLE SIZE
The sample size for data collection was eight case studies as the availability of contacts was
limited and hence the researcher could contact eight cases
3.9 DATA COLLECTION
The researcher used unstructured in-depth interview as the primary tool for the data collection
from the sample. In- depth interview is a technique that facilitates a comprehensive coverage of
information. It provides an opportunity for the respondents to express herself on the subject freely
and fully. ( Ramachandran.P, 1993).This method also provides a greater possibility of exploring
the details. ( Ahuja, Ram, 2001).Researcher had collected data from eight samples using in depth
interviews.
Another important tool for data collection was observation.
Journals, articles and books are the secondary tools of data collection.
3.10 LOCATION OF THE STUDY:
The study was conducted in Ernakulum and Kottayam districts of Kerala. These are the two
districts in Kerala with high literacy and these are the two main towns in Kerala. So the
researcher thought of looking at the burden of caregivers of these districts, so that it will through
a light at the awareness level of the caregivers. The availability of ARDSI is also a reason for
choosing these two districts
Apart from that, the researcher was well conversant with the local language and thus thought that
conducting in-depth interviews, explaining and understanding terminologies would not be
difficult. Since this is a qualitative study, it is very necessary to have in depth understanding
about the response of the participants.

39
3.11 ETHICAL CONSIDERATIONS
 Right to be participate in the interview and to withdraw from the interview was given to
the participants
 Respected the dignity of each participant and the Alzheimer’s patient in the house.
 Amount of sensitivity was there during the interview with the participants
 Study is conducted in a manner that there is no case of plagiarism
3.12 LIMITATIONS OF THE STUDY
 The data collected is from only two districts in Kerala and so it will not give the clear
picture of the problem that suffer by the caregivers of other part of the country.
 Another limitation was that the study is not looking at all the strata of people in the
society. Nobody in the research is having below average financial status. A true picture of
the financial and economic problem faced by the care givers of Alzheimer’s in poor
section of the society is not shown in the study.
 Care givers have not articulated the support system as the researcher expected. An
understanding about the various formal support services in improving care giving
experience of caregivers is not mentioned in the study.

41
There is much pain to endure when watching a loved one suffer with Alzheimer’s
disease. There is a pain of perpetual grief. There is the struggle to preserve dignity
and the desire to respect the present and cling to the past. However, in the midst of
the heartache there is a smaller glimmer of light that exist to remind us of the
things that Alzheimer’s can’t take away….the warmth of a touch. The importance of
smiles and laughter and the knowledge of what it truly means to experience
unconditional love and acceptance.

42
CARE GIVER AND CARE GIVING
Almost all the people with Alzheimer’s is getting care from relatives or other family
members.(Rogers, 1995). This chapter sketches the profile of the family caregivers who were the
part of this study. Study included the care givers who are currently taking care for an Alzheimer’s
patient. Profile includes the age, sex, relationship with the patient, occupation and the family
structure. This chapter also focuses on the reasons of becoming a caregiver of an Alzheimer’s
patient. Also an insight about the different dimensions about the care giving and the different
roles that comes into play while once takes the role of caregiver. The study was conducted among
the caregivers of Alzheimer’s patients in the state of Kerala. Two urban cities, which are
Kottayam and Kochi, were the areas from which the data was collected. These are the two
districts in Kerala with high literacy and these are the two main towns in Kerala. Also these are
the two districts with high economic growth.
4.1 PROFILE OF THE PARTICIPANTS
Contextual and background profile are said to influence the experiences of caregiver. The
following section examines the socio demographic profile of the caregiver and its effects on the
caregivers well – being. Background variables include the socio demographic characteristics of
the caregiver like age, gender, and relationship with the patient, occupation and the family
structure.
In the study the proportion of female care givers was higher while compared to male caregivers.
According to Zarit et al. 1986, it is generally the women who assume the role of caregivers in
India and care giving is only the extension of the traditional responsibilities of wife and daughter.
For men suffering from dementia in the study, that is seven participants, the spouse was the most
common caregiver if alive and healthy or else it was the daughter in law. For women, who are
only two cases, the care is given by spouse and daughter – in- law respectively. Interestingly, the

43
study found that all the caregivers were women. Prakesh (1999) has rightly said that there is a
clear ‘feminisation of caring’ even in India. It is generally believed that the women who assumes
the role of the caregivers in India and care giving is only an extension of the traditional
responsibilities of wife and daughter ( Zarit et al.1986).Family members follow the societal
norms concerning responsibility of care of elderly members and as a result women are forced to
bear the burden of care. The majority of the female participants in the study accepted care giving
as a part of their role in family.
Age is also an important factor that contributes to the quality of the care giving. Age can
influence the caregiver’s ability to provide proper care. In the study it was found that all the
spousal caregivers was of the age above sixty except one, who was 58. Daughter in law care
givers and daughter care givers was of the age between 30 – 40.Care givers are themselves above
the age of 55. This shows that the care givers who are the spouses are also in or about to reach old
age and this is going to affect both the caregiver and the care receiver. The caregivers health and
emotions are going to affect and the quality of care will be also deteriorating as the ages pass by.
As far as the educational level of the caregiver is concerned, all eight of the participants in the
study were literate and out of these eight five have post graduation level of education. There are
participants in the study who quit their job or sacrifices or voluntary retired for taking care of the
Alzheimer’s patient. The participants include the people who were teachers and bank employees.
The analysis of the nature of the relationship of caregivers to patient shows that five out of nine
participants were spouse of the patient. Three was daughter in law and one was daughter. The
choice of care giver tends to follow a hierarchical pattern that Shanas (1979) referred to as the
principle of ‘substitution’. Generally, it would be the spouse who takes up the role of caregiver,
but women would be more likely to serve as a caregiver for a family member of the same
generation than a male. Cantor( 1983) disused the hierarchical compensatory nature of care

44
giving, with spouse and children being preferred as the main support systems, followed by
relatives, friends and neighbors and lastly formal organizations
Figure 6 : Relationship of the Caregiver with the Alzheimer's Patient
But in my study I found that, spouse is followed by daughter-in-laws. According to the traditional
setup in Kerala, parents live with the sons family, so son and daughter –in-law have a major role
in care giving in the absence of spouse. This pie chart also depicts that all the care givers in the
study are married.
Another interesting observation which I found through the study about the occupation of the care
givers are that they are either home makers, retired (voluntarily), or unemployed. This could
mean that the care giving responsibility was assigned to a person in the family who stayed at
home and are physically present, since they would have more flexible free time in their household
responsibilities. All the voluntarily retired caregivers are females.
Spouse
Daughter in law
Daughter

45
4.2 BECOMING A CAREGIVER
Tradition is one of the main reasons why they choose to become a care giver. Most of the
caregivers were having the opinion that the care giving role was a part of the tradition. Care
givers are having the opinion that according to Indian tradition, the female member of the family
took take care of the ill members in the family. They said that the tradition and culture of
‘Bharatiya Nari’ is to give care to others. Mrs. Kumari was explaining the Kerala culture
“According to our tradition and culture, have you heard any story regarding someone else is
taking care of the husband. So, our tradition and culture ask us to work for husband, take care of
husband.” There are spousal care givers who believe giving care to the husband as part of the
tradition and the culture of India and Kerala.
There are respondents who believe that it is a matter of obligation towards the elders or the
responsibility towards their spouses. On care givers being asked, why they became the care
givers, some pointed out that as being son and daughter in laws, they had an obligation to take
care of the in laws as it is the responsibility of the children. This is what Mrs. Lekha said
regarding the reason why she choose to be a care giver.“We are children and it’s our duty and
responsibility to take care of the parents when they are at their old age” There are daughter in
laws who also said that it is because they have no siblings or else the other siblings are staying far
away is the reason for being a care giver. Mrs. Meena said that “As my husband is the only son
and since we are staying with them, we should take care of them”. There are caregivers who
consider this as a duty and responsibility of them and took the role of the care giver. There are
caregivers who don’t have siblings, so that they consider care giving as their own responsibility.
Some care givers are taking care of the Alzheimer’s patient because siblings stay far away from
the family. To the care giver consider caretaking as their responsibility.
As Mrs. Menon told, “He took good care of me when he was healthy, so this is my duty to take
care of him; this is a chance for me.” Here the theory of reciprocity is applicable. Care giver-

46
care receiver relationship is based on a reciprocal relationship, which means rewarding back for
the work and care that the patient had given before illness. Many care givers describe their care
giving experiences as an opportunity to repay their parents, spouses – an opportunity to give
something back (Dupuis,1997).Reciprocity is a crucial feature of human social relationship and
may lead to long run to the highest level of outcome.(Axelrod,1984). Reciprocity is considered as
the main feature of relationship (Hartup & Stevens, 1997). In almost all the cases of spousal care
givers, the care givers had a perception that this is a time to give back to the patient, since the
patient had good relation with them prior to the illness. All the spouse caregivers reported that
they had a pleasant relationship with the patient prior to the illness. This reciprocity is seen
among the spousal care givers.
Increased mastery and accomplishment is also a reason. Many participants reported a sense of
increased mastery and accomplishment while learning new skills. Mrs. Memon said “Am gaining
new skills and techniques everyday for dealing with him. I feel accomplished after taking care of
my husband”. Care givers may develop feelings of power, advocacy and a feeling of
accomplishment in the responsibility of caring for a loved one at home (Cohen et al.,2001)
Participants who are the daughter in laws also adds that since husband was taking care of the
office and the business it was the duty of wife to take care of the house and the family members.
According to the Kerala culture, the youngest son has to take up the responsibility of the parents
and the son's responsibility to take care of his parents will automatically falls on his wife and thus
the role of care giving fell on her shoulders. There was a participant in the study who felt
compelled to take care by her husband. She said “After marriage my husband and his family
members ask me to take care of his father, since the mother was expired.” So the reason for being
a care giver is not only seen as a responsibility, or respect to elderly, but also as a result of social
pressure. Though the participants expressed satisfaction and contentment from the role, at times

47
they sounds like this was thrust upon them and they felt trapped. When a family member falls ill
or requires some form of assistance family members are forced to bring changes in their lifestyle
because of care giving.
4.3 DIMENSIONS OF CARE GIVING
The care givers in the study were taking care of Alzheimer’s patients with mild decline, moderate
decline and moderately severe decline. These are the leves of Alzheimer’s where the patient need
the help of the care giver in almost all the activities that they are doing, which include the
Activities of daily living.
Individuals obtained help from their caregivers with ADLs and IADLs, as well as companionship
care (needed company, including supervision for safety).As the disease progresses the patient is
having difficulties in dealing with simple daily living activities. The care of a person with
Alzheimer’s including a range of duties from daily management to handling incontinence. People
who suffer from Alzheimer’s have negative effects on everyday functioning of persons suffering
from this disease. The ability to perform daily living activities is affected because the
performance of ADL depends on the memory functions. According to (Pearlin et al.1990) ,
primary stressors in care giving are made up of demand sand tasks anchored in daily care like
supervising the patients, restraining the patients from potentially harmful actions and performing
bodily maintenance task like bathing, dressing, feeding and so on. All the participants of the
study agreed with the fact that the patients need care and assistance for the daily living activities.
While caregiver support programs and policies tend to be defined and organized around activities
of daily living like bathing, feeding, dressing, and toileting, caregivers report that this is only part
– though a demanding and time-consuming part – of what they do.
In the study every participants told that they need to help the patient in account with Daily living
activities. In the initial stages of the illness, care giving involves only partial assistance , but as

48
the illness progresses the assistance required for ADL increases and involves 24 hour demanding
care. Almost all the caregivers are helping the patient completely in the aspect of ADL. “He
needs help in almost all the Daily living activities, starting from the brushing. I will make him
brush the teeth. If I gave the brush and paste to him he will brush it all over his body, but not in
his mouth. Even after brushing, he doesn’t know that he need to wash his mouth after brushing.
So I need to be with him every from morning. He also needs help in dressing. But still he knows
how to put buttons of his shirt. Sometimes he will skew the buttons of the shirt like this.” Mrs
Sulaihabeevi said this while correcting his skewed buttons on his shirt.
4.3.1 Personal Hygiene:
Personal Hygiene is very important for having good health. The personal hygiene of the patient is
taken care by the care giver in almost all the cases.
It starts from daily brushing of the teeth in the morning. There are participants who don’t know
how to brush and there are participants who will be stubborn about not brushing the teeth. Mrs.
Kumari said “ The first task, brushing his teeth is a very tough job for me. He is very rigid and I
have to take so much effort to make him brush. He don’t like to brush”.
Toileting is also an important area of care giving. The patient will be unaware of the places and
even the house which he/she lives in. Mrs.Lekha was whispering while she said that her mother
in law even used to pee in the floor. She said “…..she doesn’t know where the washroom is. She
will even pee on the floor.” Making the patient sit on the toilet bowl is also a difficult task for the
care givers. Mrs. Meena told “Most of the times I will hold him while he is in the toilet, because
his legs got slipped into the toilet bowl, so now I will be with him inside the toilet” This shows
the level of care that the patient needed while toileting.

49
Bathing the person can become a major challenge because it may result in the person refusing to
take baths. There are different ways in which the care givers manage the activity of bathing.
Some of them are made to sit in the chair / stool and given a bath, or making them stand by
holding their hands. Mrs.Sulaihabeevi told that “Even after 30 minutes he went into the bathroom
he was standing still in the corner and on that day onwards , I started to make him bath”
There are patients who require regular reminder about bathing and also there are patients who
require regular reminder saying that they took bath. Mrs.Leena said “Every day morning he will
take bath, but after that again he will get ready to take bath saying that he didn’t took bath today.
This is a regular thing in our house”
There are participants mentioned that they will model the patients through actions and make the
patient’s bath and there are participants who only arranges essential need for bathing. The
problems that the caregivers encounter during giving bath up patients with Alzheimer’s are
difficulty in handling, person getting restless, resistance, abusiveness, stiffening up and laziness.
Grooming the patient is also a tough task for the care givers. Cutting the nails, cutting the hair
also falls under this category.
Problems in dressing generally fall into three broad categories: difficulty with what is worn,
problem with the ability to put on cloths properly and problem with when and where to change
cloths properly and refusal to change cloths. Individuals who suffer from Alzheimer’s in the
study lose either the ability to select clothing and have difficulty with buttons, zips, wearing
chapels on the proper leg and shoe laces. Clothing is often worn inside out or backwards and
there may also be repeated disrobing in public.
A significant number of care givers in the study had to provide hands – on assistance in dressing
the person as they were unable to manage on their own, while in some cases the care givers had
to take assistance from others to dress the person. In most of the cases the respondents told that

50
the patient may button the shirt in an awkward manner or disrobed. Mrs.Menon said “He cannot
wear his shirts by himself. Earlier he used to were the shirt and put the buttons on the wrong
order. But now he doesn’t know how to put a button.”
One other main problem that is reported in the study about dressing is that the frequent changing
of the cloths. Another problem include disrobing or refusing to change cloths.
One of the main other problem regarding dressing is the problem with the unawareness where to
change the cloths. “One day, during the initial stage, I was in the kitchen, somebody rang the
doorbell. I went and opened the door…Mrs. Lekha continued her experience….While we were
talking, amma come out of the bathroom without a single piece of cloth. I asked her to go back
and she refused”
4.3.2 Nutrition
Each household has its own day to day eating habits, patterns and table manners which the family
members are expected to follow. Alzheimer’s affect the patterns of eating and the problem arises
when the skills needed for eating are lost or the person has forgotten the acceptable behavior
while eating. Meal time is stressful for the care givers as the disease condition progresses.
“Making him eat is a real trouble for me. It was not that difficult in the beginning, but as time
passes by, it’s becoming the most difficult task. Because we have to be careful while making him
eats” .This was the opinion of Mrs.Venu about the task of making her husband eats. It is
important for the caregiver to ensure that the person is eating enough amount of food and
drinking enough amount of water. Mr.Jacob said that “Meal time is something stressful. The way
she eats is getting worse as time progresses”. The caregivers are also aware about the fact that at
times, the care receiver will stop eating as a result of pain or some other discomfort in the mouth,
which requires medical attention. “….and I always be with him while eating, so that I can

51
understand is there is any kind of problems for him while eating”. As a result of Alzheimer’s, the
person may forget that they have eaten and request again for another meal thinking that they
haven’t eaten before. Mrs.Menon said “Some days he will ask for breakfast for five times a day
even after eating it”. Problems as mentioned by caregivers in feeding the person includes poor
appetite which means the lack of desire to eat, even though the patients haven’t eaten appropriate
amount of food.. “Some days it’s very difficult for make bappa eat something, even though he
didn’t ate something”. Refusal of food is also seen commonly among the patients and the
caregivers in the study reported that the patients used to refuse food at times. Forgetfulness about
taking meals and the meals that has been taken is also something that has been reported by the
care givers. Mrs. Kumari said “Today morning I gave him coffee, after 10 minutes he is asking
for coffee again because he forgot that he already had tea”. Carelessness while eating is also
seen among the Alzheimers patients. This is what a caregiver mentioned about that “I have to be
with him while eating, otherwise sometime he will sallow even the bones and wastes of the food”
and spitting of the food is also common among the Alzheimer’s patients.
These are the problems related to eating and nutrition among the Alzheimer’s patients.
4.3.3 Instrumental activities of daily living:
The patients also have problems with completing tasks such as preparing meals, managing
money, shopping and doing housekeeping or laundry known as the Instrumental Activities of
Daily living. “He doesn’t know whether it’s a 100 rupee note or 500 rupee note. He will take 10
rupee when I ask him to bring a 100 rupee. He will bring 1 rupee and say here is the 100 rupee.
He forgets the numbers and money.” Mrs. Menon said. Managing money was the duty of the
patient before the situation of Alzheimer’s in almost all the families and now the caregiver have
to take care of those things too. Other instrumental activities of daily living includes helping with

52
transportation, grocery shopping, and housework, managing finances, giving medicines,
preparing meals, and arranging or supervising services. Mrs. Kumari said “He can’t even eat his
own medicines. I have to take care of that too”.
4.3.4 Communication:
Communication is the way that we share information or exchange ideas. One person conveys a
message and the other person is expected to respond. Basic communication is heavily impaired
with dementia, mainly because of the damage to the brain hinders the normal passing of message
in the brain system. It will become difficult for the dementia patients to put all together and
express what they want to express.
Communication constitutes one of the core care giving activities as the communication aspect get
affected early in the course of the illness. (Davis et al. 1997).So the communication between the
care giver and the patients are difficult at times. As dementia progresses language as a means of
communication becomes less effective. The individual gradually loses the ability to communicate
properly. “He was more clear while talking in the beginning, but now I am not able to
understand what is he saying and what he want to tell to me” Mrs. Menon said. The caregiver
uses different methods to get the message across.
Problems experienced in communication were mainly due to decreased interaction by the person
suffering from Alzheimer’s, difficulty in compression either for the person with Alzheimer’s or
the care giver and repetitive questions by the patient. Participants in the study also said that, the
communication is obstructed also due to symptoms like muttering to self and continuous or
irrelevant talk which is a part of their behavior. Mrs. Leena said about the communication with
her father.“Appa will always mutter something. I will not understand what he wants to say.”

53
With respect to the different ways the care giver communicated with the person, it was found that
the majority uses verbal cues like giving repeated commands while others uses non verbal cues
like showing products and items. Mrs.Menon shared how she communicates with her husband “I
will show like eating and will ask whether he need food. All those sign languages work with
him.” Problem with communication between the caregiver and the care receiver is also a main
problem.
4.4 CHANGES IN THE ROLE
Being a care giver of an Alzheimer’s patient will make the caregiver to play multiple new roles.
In the study it was found that the caregivers after being the caregiver had one or many new roles
to play in the family. In most of the cases, the roles that played by the Alzheimer’s patients is the
duty of the care giver now. It ranges from simple going to market to handling the financial
matters that includes the property issues in the family. Medical management in the family is also
a new role of the caregivers. Helping the person take medications correctly, either via reminders
or direct administration of medications is also a task attached. Care givers are going and buying
medicines for the patient and they are giving the medicines for the patient at regular times.
Mrs.Lekha said “She can’t even eat her medicines of her. I have to take care of her medicines
too.” Mrs. Menon said “Now am taking care of all the financial matters……I want to take care of
all the property we have. I want to handle all the papers about the property.” There are
participants who said that they wants to deal with the legal matters regarding the property and all.
Financial management role such as balancing the cheque books, paying bills of the house, and
filling the income tax forms are some new financial roles that the caregivers takes up. This is also
a new role for them. The care givers are insisted to take care of the financial matters in home
starting from dividing the income of the family to different matters, going to bank to collect

54
pensions and also to deal with all bank related issues. All these are the new roles that the
caregivers are playing now. There are caregivers who are even handling the pensions of the
Alzheimer’s patient and are going to bank to collect the money transactions. Taking care of the
property is also a new duty of the care givers. There are care givers who even take care f the
property they haven’t seen before.
Managing behavioural symptoms of the disease such as aggressive behaviour, wandering,
depressive mood, agitation, anxiety and repetitive activity is another task that the care givers are
engaged with. In the study every respondents mentioned about the personality change and the
aggressive behaviour of the Alzheimer patient. So dealing with it and taking care of their mood
fluctuations is also motioned as a new role for the caregiver. Mrs.Kumari said “I also have to
manage his new behaviour of being aggressive at others and me”.
These all are some of the new responsibilities and roles that the caregivers take up along with the
role of a caregiver.
4.4.1 Career
Working full time and providing care for the family member always and often leads to conflicts
between work and care giving responsibilities. As ‘women in middle’ (Brody,1981) , women
caregivers confront competing demands of house work, child care and employment, in addition to
their care giving demands. Providing dementia care can become a full-time job without adequate
support. Caregivers may be forced to quit work, cut back on work, or take a less demanding job
in order to provide care.
As the tasks are increasing in care giving there are increased difficulties in meeting the care
receivers needs in light of increasing cost of care. Besides the direct financial costs, (e.g. Cost of
services, drugs, physicians, additional household expenditure, direct cost of time in care giving),

ALZ TISS

Recommended

Recommended

More Related Content

Viewers also liked

Viewers also liked (13)

Similar to ALZ TISS

Similar to ALZ TISS (20)

ALZ TISS