1. Experience of Family
caregivers of Alzheimer's
patients : A study in Kerala
Elizabeth Soby
M2013PH007
Research Guide:
Dr. Asha Banu S
2. Introduction
• 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.
• 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.
3. • 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.
• 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.
4. • 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.
• 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. Literature Review
• 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)
• It is estimated that by 2050 the world population
over the age of 60 will be 2 billion (World Population
Ageing, 2009)
6. • Social care system and dementia
• Dementia and care giving
7. Rational of The Study
• Alzheimer's disease is a degenerative process
in the brain that produces intellectual
impairment in over 3.7 million Indian adults.(
ARDSI Report 2010).
• The incidence of the illness increases with age
and it is estimated that 20% of people over 80
have this disease (Gwyther & Matteson, 1983)
8. • 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.”
9. • 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). Most Alzheimer’s patients relay on
the family support system for providing essential
and intense care. (Clara C. Pratt, Vicki L. Schma,
1985 p27)
• The disintegration of the joint or extended
families into nuclear families.
• In the Kerala scenario, the high amount of
migration of the youth
10.
11. Objectives
1
• To identify the various care giving activities and
the practices that the care givers are engaged in.
2
• To study the challenges of care giving as
experienced by caregivers
3
• To explore the factors that supports the care givers
12. Research Questions
• What are the actions that the care takers are
engaged for giving care for the people with
Alzheimer’s?
• 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?
• 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?
13. Research Design
• Research Design – Qualitative Research
• Approaches to Enquiry – Phenomenological Research
14. Sampling
• Researcher used Purposive sampling to identify the care
givers of Alzheimer’s patients.
• 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.
15. 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.
16. Exclusion Criteria
• Care giver of the patients who are staying in
residential homes.
• Caregiver who is not the relative of the
patient.
18. Location of the Study
Kottayam
and
Ernakulam
districts
Economically
Developed
High literacy
Availability of
ARDSI
Conversant
with the local
language
19. 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
20. Analysis
Activities
of Care
giving
• Profile
• Dimensions of Care
giving (ADL,
Communication, Change
in role)
• Awareness and care
giving
Challenges
• Socialization Patterns
• Challenges in Personal
Life (Psychological,
physical and Personal
Life)
• Financial Challenges
Support
systems
• Formal
• Informal
THEMES
22. Profile of the Care givers
Gender Females
‘Feminization of
Care giving’
Relationship
Follows an
order (Theory
of Substitution)
Spouse,
daughter-in-law,
Daughter
Education Literate ,
Educated
home makers,
retired
(voluntarily ), or
unemployed
Occupation
23. DIMENSIONS OF CARE
GIVING
Activities of Daily
Living
Eating, Dressing
Bathing, Toileting
Communication
Lack of
communication, Verbal
and non verbal cues
Change in Role
Medical management,
household
management
Financial
management, Property
management
24. Awareness and care giving
• Lack of awareness is also an important area to discuss. It is the
lack of awareness of the care givers and at the same time lack
of awareness of the society outside.
• Dementia India Report (2010) explain that general lack of
awareness has serious consequences, such as delayed
diagnosis and not seeking help from formal medical care
services. All the participants have the same opinion that in the
beginning everyone thought that the symptoms that they are
showing are because of the normal lack of memory during the
old age.
• Becoming well informed about the disease is very important
to remove such kind of misconceptions about Alzheimer’s
disease.
25. Support systems
• “I don’t receive any kind of help from any other family
members. Instead they will de motivate me by saying
that he was lost one night because of my carelessness.
It’s all easy for them to sit and talk. But when it comes
to the real life, it’s not that easy to handle. We cannot
shut the, mouth of others. They don’t understand how
much I am doing”
• “Even though my children are not here, they will call
me up every day and will ask everything and they are
the ones who sent the money to us without any delay”
• “I should have died of tension and depression if I don’t
have the support from my children and my brothers.”
29. Personal
Health
Physical
Health
Back Pain
Body Pain
Blood pressure
Psychological
Health
Stress
Burn Out
Loneliness
Self - esteem
Reduced Health
Seeking Behaviour
Personal Relations
• Time spend with family
• Lack of time for children
• Less time for oneself
30. Recommendations
• Systematic national approach to establish a
framework for dementia education in India in
order to equip the people with skills to meet the
challenges
• There should be training in the social network
interventions. Enhancement of social support
networks for caregivers requires specific training
in order to transfer knowledge, skills and
techniques to care givers .
31. Reference
• Alzheimer’s Association, (2012) Alzheimer’s Disease Facts and Figures, Alzheimer’s
& Dementia. US
• Alzheimer’s & Related Disorders Society of India (2010). The Dementia India
Report: prevalence, impact, costs and services for Dementia. ARDSI, New Delhi.
• Shaji S et al.(1996) An epidemiological study of dementia in a rural community in
Kerala, India. British Journal of Psychiatry, 15( 3).
• S. Shaji, Bose Srija and Verghese Abraham(2005) Prevalence of dementia in an
urban population in Kerala, India,The british journal of Psychiatry,186, 136-140
• Clara C. Pratt, Vicki L. Schmall, Scott Wright and Marilyn(1985) Burden and Coping
Strategies of Caregivers to Alzheimer‘s. Family Relations, 34(1), 27-33
• Deborah Marin et al. (2003) Impact of Rivastigmine on Costs and on Time Spent in
Care giving for Families of Patients With Alzheimer’s Disease. International Psycho
geriatrics, 15(4), 385-398.
• Janice K.(1987) Chronic Stress and Immunity in Family Caregivers of Alzheimer's
Disease Victims , American Psychosomatic Society 49:523-535
