Dementia caregivers handle a lot of work and responsibility for many years, but often do not realize how critical their role is. This presentation discusses caregiving in the context of dementia. It covers commonalities and differences amongst various types of caregivers. It looks at a range of caregivers who may vary in terms of their age, gender, relationship with the care-recipient, whether paid or unpaid, and whether living with the person or coordinating care from a distance. For discussions on how to plan and cope with dementia home care, see: http://dementiacarenotes.in/caregivers/

1. Who are we: Introducing the
Caregivers
Swapna Kishore
cyber.swapnakishore@gmail.com
XVIIIth National Conference of Alzheimer’s & Related Disorders Society of India (ARDSI)
Guwahati (India), November 2013

2. Some aspects we will explore...
 Why persons with dementia
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need care
Who is a dementia
caregiver?
Commonalities and
differences amongst various
types of caregivers
Applying available advice
and support
The importance of
recognizing “caregiving” as
an activity/ role
So many
people live
with their
elders or ailing
spouses,
what’s this fuss
about!!
I’m not his
caregiver! I’m
his wife, this is
my duty!
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© Swapna Kishore
Of course I’m a
caregiver! I wish
people would
recognize that!

3. What is dementia?
 Examples of dementia symptoms...
 How different is it from “normal ageing”?
 What sort of difficulties do persons with dementia
face?
 Why do persons with dementia need care?
 Examples of care challenges...
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© Swapna Kishore

4. Quick overview of dementia
 Dementia is a syndrome usually characterized by a
progressive, global deterioration in intellect including
memory, learning, orientation, language,
comprehension, and judgment due to disease of the
brain ( -- Dementia India Report 2010)
 Symptoms caused by one or more diseases
 90% caused by Alzheimer’s Disease, Vascular
Dementia, Dementia with Lewy Bodies, Fronto-temporal
dementia
 Different underlying diseases have different
characteristic symptoms and different underlying
changes in the brain
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© Swapna Kishore

5. Quick Overview of Dementia
Dementia
subtype
Early, characteristic dementia
Proportion of
symptoms
case
Alzheimer’s
Disease (AD)
Impaired memory, apathy and
depression, gradual onset
50-75%
Vascular dementia
(VaD)
Similar to AD, but memory less
affected, and mood fluctuations more
prominent. Physical frailty. Stepwise
progression
20-30%
Dementia with
Marked fluctuation in cognitive ability.
Lewy Bodies (DLB) Visual hallucinations. Parkinsonism
(tremor and rigidity)
Frontotemporal
dementia (FTD)
5
< 5%
5-10%
Personality changes. Mood changes.
Disinhibition. Language difficulties.
(From table 1.1 of Dementia India Report 2010)
© Swapna Kishore

6. Quick overview of dementia
 Dementia is NOT the same as ageing
 Forget where a key is kept versus not knowing what a key is
 Forgetting own name, children, year, city
 Most dementias are irreversible and progressive
 Role of medicine currently is very limited
 Cannot be reversed by medicine
 Dementia affects every person differently
 Depends on the underlying disease
 Depends on what the person was like before the disease—
personality, lifestyle, significant relationships, health
 Deterioration rate also differs
 Can range from a few years to over a decade, with more care
being needed as dementia progress
 Care approach therefore needs constant adjustment
 flexible and creative
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© Swapna Kishore

7. Who is a “Dementia caregiver”?
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© Swapna Kishore

8. “Dementia caregiver”
Someone with dementia is the care-recipient
The dementia caregiver has
 some degree of responsibility (for at least some time) for person/ care
decisions
 some degree of share in the tasks
 doing them/ arranging for them/ paying for them
 “provide or manage care”
 actions affect the well-being of the person
Typically, the caregiver can handle care better with
 good understanding of dementia and its impact on the person
 knowledge and skill with suitable caregiving techniques
 use of support, services, etc.
(Note: the caregiver may not consider himself/ herself as a caregiver, but the
knowledge and tools will still help)
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© Swapna Kishore

9. About the care and the caregiver
Some excerpts from the Dementia India Report 2010:
Care giving has been defined 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 giving is a long-term evolving process. The onset of caring is often
hard to define. The need for care may precede or post-date a formal
diagnosis of dementia. Need for care tends to escalate over time, from
increased support for household, financial and social activities, to personal
care. Later on, in several cases, it could involve almost constant supervision
and surveillance.
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Dementia care in India is almost entirely home based.
© Swapna Kishore

10. “Dementia caregiver”
 There is no “standard”/ “uniform” experience of being a
dementia caregiver, but there are commonalities
 Wide range in types of dementia caregivers, on aspects like
 Abilities of dementia of person receiving care (hence, type of
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care needed)
Relationship of caregiver to person
Type of tasks done by caregiver
Degree of responsibility
Amount of time, energy, money being used for giving care
Distance from the person receiving care
Paid or unpaid caregiver
Amount of changes the caregiver makes to handle this care
work
How the caregiver identifies with the label of “caregiver”
(Note: a person with dementia may have many caregivers)
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© Swapna Kishore

11. Examples of things caregivers do
 Create a living space that is safe and suitable, given the
current level of the person’s abilities
 Help with activities of daily living
 Bath, grooming, eating, walking, exercise, etc.
 Handle challenging behavior
 Agitation, wandering, withdrawal
 Do interesting/ stimulating “activities”
 Coordinate the use of support services
 Keep adjusting support to the changing abilities of the
person
Care could require almost full-time availability, include physically tiring work,
and be emotionally exhausting
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Caregiving continues for years, even more than a decade
© Swapna Kishore

12. Difficulties many caregivers face
(Family caregivers)
 Adjustments in career / leaving career (to be available for care)
 Social isolation/ loss of friends and colleagues
 Reduced time and energy for other roles/ responsibilities
 Sense of loss/ frustration
 at seeing the decline or coping with challenging behavior
 Financial problems (reduction in earning and increased cost of
care)
 Physical fatigue
 Depression
 Stress
 Criticism from outsiders who do not understand
(Impact is lower for paid caregivers)
(This work is very different from living with or caring for a cognitively
alert elder)
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© Swapna Kishore

13. Care-recipient: the person with dementia
Persons with dementia
 may not believe or understand the diagnosis
 (or may forget it)
 may not realize they need help or care
 may cover up mistakes, causing caregivers to
underestimate their difficulties
 may be scared that accepting help makes them
seem weak/ bad
 may resist care/ help
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© Swapna Kishore

14. The criticality of caregiving
Dementia is often irreversible and progressive
• More and more help needed
• Many years
Limited role of medication
Wellbeing of person with dementia and the family depends heavily on
the caregiver
 How well they understand dementia and can apply suitable tools
 Their emotional ability to cope
 Time, energy, money they can use
Also, on availability of paid care and various support services
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© Swapna Kishore

15. When does caregiving start?
 A person develops dementia
 Often insidious, symptoms progress from mild to moderate
to severe
 Diagnosis often delayed
 Someone provides the care
 Care required increases as dementia worsens
 Family members may not start seeing themselves as
“caregivers” because of the diagnosis
 Family members may never think of their care as being
“caregiving”
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© Swapna Kishore

16. The onset of caregiving
When is the person diagnosed?
Changes are usually gradual
Condition keeps getting worse
Person develops dementia
Abilities change, person begins facing difficulties
Family members start supporting person as the abilities reduce
Daughter
Daughter who is helping mother
When can the daughter start benefitting by
understanding dementia and using tools and
services?
When does she start considering herself as a
“caregiver” daughter?
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© Swapna Kishore
Caregiver
daughter?

17. Paid caregivers
Person diagnosed with dementia
needs care
(in a residence or a dementia facility)
Work hours job description:
Paid caregiver helping
someone with dementia
Paid caregiver goes to work
At home/ non-working hours
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© Swapna Kishore

18. Paid and unpaid (informal) caregivers
Commonalities
 Need knowledge of dementia and of caregiving tools
Differences in
 Onset/ identification with role
 How many hours a day, how many years
 Time and energy available (because of other roles)
 Degree of choice of role/ ability to walk out
 Emotional relationship and past history with person
 Knowledge of person (and existing interaction patterns)
 Setting in which care is provided may also be different
 Recognizing that knowledge, tools, and support will help
 Availability of training, peers, knowledge base
 Advantage/ disadvantage of seeing other persons with dementia
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© Swapna Kishore

19. Live-in and distance caregivers
 Distance caregivers’ helplessness, reaction time
 Differences in how they view current state of person
with dementia
 Live-in caregiver’s fear of getting over-involved/
submerged
 Can result in criticism, mistrust, lack of status sharing
 Advice needed is different for these different profiles
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© Swapna Kishore

20. Male and female caregivers
Societal expectations are different
 Females typically considered more “suitable”, expected to give
up their career, have more “duty”
 Upbringing may have equipped females more for some aspects
 Males may be reluctant to admit their role openly (especially a
son who gives up his career while his wife continues hers)
 Advice and support may be less available for males
Also, the problems of caring for someone of the opposite sex
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© Swapna Kishore

21. Primary and other family caregivers
 Even within the home, some are directly
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involved, some are not
Primary caregiver:
 Immersive caregiving and main
responsibility
 More loss of other identities/ roles
Other family caregivers:
 “When I have time” help, “Emergency” help
 More likely to continue with other identities/
roles
Difference in type of guilt, blame,
responsibility, “accountability”
Difference in levels of stress, fatigue,
isolation, types of concerns and issues as
caregivers
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© Swapna Kishore

22. Young, middle-aged, elderly caregivers
 Young (even teenaged) caregivers of parents/
grandparents/ aunts/ uncles, etc.
 Affects education, job
 Financial crunch
 Peer group priorities and activities very different
 Middle-aged caregivers of spouse, siblings, parents,
friends/ relatives, etc.
 Also handling kids, career, other elders
 Major time management problems, financial problems
 May have health problems
 Elderly caregivers of spouse, siblings, friends, relatives,
children with early onset, etc.
 Own health problems, physical inability, poor mobility
 Other elderly members needing care (e.g., spouse,
siblings)
 Peer group often unavailable, ageing, distant
 Lack of savings
22  Lack of “contacts”
© Swapna Kishore

23. Caregivers for different types of dementia
 Symptoms and progression different for different types of
dementia
 Most awareness focuses on “majority”
 Elders more likely, “memory loss” a typical symptom
 So other types of dementia
 Delayed diagnosis, especially if early onset and no memory
loss
 Many volunteers/ systems not as informed/ sensitive
 Keep using “Alzheimer’s” as the model
 Behavior problems are not identified as dementia, advice and
“My husband
tried to kiss the
nurse. His
mother said his
character is
spoilt and
slapped him.”
tips less available. Caregivers unaware of what to expect.
Examples:
 Agitated behavior/ indifference (when there is no memory loss)
 Unable to manage money
 Abusive language, dis-inhibited behavior
 Early onset support is lower
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Caregivers may need to join communities for
specific type of dementia
© Swapna Kishore

24. Available caregiver advice
 Often does not differentiate between types of
caregivers and their care settings/ situations
 Advice may be impractical in current settings
 Poor support and awareness
 Culture/ country
 May not focus on emotional adjustments needed by
family caregivers
 Provides procedural/ prescriptive advice
 But may not “counsel” on how to get over past patterns/
emotional difficulty of watching person deteriorate
 May not include tips directly applicable to a particular
person’s dementia challenges/ environment
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© Swapna Kishore

25. Understanding variety of caregiver
concerns is helpful
 Many concerns and challenges are common across caregivers
 So are the tools
 But often, available advice is bundled for some sort of a universal
“caregiver”
 To use available material (books, trainings, support, etc.)
effectively
 we need to view it using our perspective and pick what is helpful
 we may need to adjust advice to fit our situation better
 we may find useful tips even if our specific situation not addressed
Volunteers can offer better suggestions if
they understand various care situations
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© Swapna Kishore

26. Available support for dementia care
Types of support include
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Availability of trained paid caregivers
Day care, respite care
Subsidized medicines/ care costs
Caregiver resources, training, support groups
Often very low support
We may have to create our own support systems
 Educate friends, relatives who are willing to listen
 Modify and use support systems available for other
illnesses/ ageing elders
 (like training elder care attendant for dementia)
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© Swapna Kishore

27. Caregiving is not done in isolation
 Is the community dementia aware?
 Is the community dementia friendly?
 If not so, caregivers also have to
 create a supportive and well-informed environment
 build safeguards from problems created by
ignorance of others
 Individuals, systems
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© Swapna Kishore

28. Returning to “Caregiver as a role/ activity”
How accepting the label helps
 “Doing important work”, not “forced to
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give up my career to stay at home”
Caregivers are willing to seek
information, training
Open to support groups
Sense of community
Reduces the learning curve
However,
 Some people dislike the label
 People around them may scold/ shame
them about the label
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© Swapna Kishore
The “caregiver” label
 A role? An identity?
Just a description of
some activities?
 Usually self-chosen,
not using a standard
definition

29. Recognize caregiving activities
Family caregivers need support to
 Handle dementia care
 Handle other roles and responsibilities
 Maintain their own health and well-being
 Maintain their sense of worth/ identity
 Cope with the loss and resume non-caregiver roles when the caregiver
role ends
Paid caregivers can be a critical component
 Needed for supporting at home
 Needed in institutional support
Recognizing the activities as “caregiving” reminds us of the resources and
tools available, and also the critical role we are playing
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© Swapna Kishore

30. Summing up...
 Dementia caregivers perform a critical role by their care for
persons with dementia. There are commonalities and diversities
across various profiles of caregivers
 Whether or not they consider themselves “caregivers”, persons
helping those with dementia can benefit from better knowledge,
better tools, and better support
 We can create a community with plenty of information and
resources suitable for all of us if we recognize the common
concerns and approaches and also respect the variations
across caregiving situations
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© Swapna Kishore

31. Thank you!
For more information on dementia care in India, visit:
Website: http://dementiacarenotes.in
Blog: http://swapnawrites.wordpress.com
Swapna Kishore
(cyber.swapnakishore@gmail.com)
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© Swapna Kishore