Caregivers: Issues and Challenges Faced--- A caregiver perspective presented on Sept 6, 2014, as part of the theme symposium at GERON 2014, the 10th Annual National Conference of the Indian Association for Geriatric Mental Health, held at Kolkata, India. If you are concerned about dementia home care, also see the pages at: http://dementiacarenotes.in/caregivers/

1. Caregivers: Issues and Challenges Faced
(GERON 2014, Kolkata, India)
by Swapna Kishore
( cyber.swapnakishore@gmail.com)
This caregiver perspective was presented on Sept 6, 2014, as
part of the theme symposium at GERON 2014, the 10th Annual
National Conference of the Indian Association for Geriatric
Mental Health, held at Kolkata, India

2. Care situations vary widely
 Problems vary...
 Medical conditions and behavior changes are different
 Families differ...
 size, members and their roles, education, financial status...
 Other factors...
 culture, social environment, location, beliefs in immediate
circle
© Swapna Kishore, 20142
Basically, no “standard” caregiver profile,
so no one-size-fits-all for advice
So importance of issues/ challenges also vary
 Managing behavior? Getting attendants? Arranging for
money? Coping with social stigma?

3. Some broad categories of issues
 Problems due to poor awareness and lack of information
 Unrealistic and conflicting expectations from caregivers
 Emotional difficulties adjusting to the caregiver role
 The impact of the social context
 Extremely challenging situations
 Disconnect between caregivers and concerned persons
© Swapna Kishore, 20143

4. Problems due to poor
awareness and lack of
information
© Swapna Kishore, 20144

5. Absence of a diagnosis
 Poor awareness impact: family does not think
changed behavior is because of any medical problem
 Behavior seen as normal ageing/ negativity/ lack of love for
family/ "Bad character” / stubbornness/ selfishness
 “Normal” redefined down a slippery slope if gradual-onset
 Unproductive action-reaction patterns formed between care
recipient and caregiver
 Elder with problem may even be considered abusive
 Doctor consulted only when there is a crisis
 Most patients not diagnosed, or diagnosed late
 “Care” done in a situation where caregiver does not
think of himself/ herself as a caregiver
© Swapna Kishore, 20145

6. Crisis driven diagnosis/ treatment
 Crisis prompts consulting a doctor
 E.g., violence, wandering, stopping to eat, suicide
attempt
 Poor awareness, hence no framework for
understanding diagnosis
 (unlike diabetes or heart problems)
 Diagnosis not understood or believed
 Medical condition often seen as related only to
crisis
 Once crisis over, person supposed to be "back to normal“
 No continued alertness/ long-term change considered
© Swapna Kishore, 20146

7. Identifying and staying in touch with
caregivers...
 How are caregivers identified?
 Diagnosis time
 Survey of community to locate affected families
 No one in family may assume role/ responsibility of
“primary caregiver”
 They may not visit professionals after initial visits
 Typically, no follow-up with caregivers for repeat visits
 Caregivers may not be able to arrange further visits
 Caregivers may decide against visiting again
 Perceive no “value add”
 Feel misunderstood/ judged
 Get distracted by miracle cures/ other “solutions”/ it’s not an illness, just
ageing
 Depressed/ isolated/ overwhelmed caregivers less likely
to continue visits
© Swapna Kishore, 20147

8. Example: what dementia caregivers retain
 Regarding diagnosis and initial sessions:
 Most don’t remember specific diagnosis
(some do, after prompting)
 Most don’t know basics, progression, etc.
 Most don’t know what prescribed medicines are
intended for (memory? agitation? vascular problems?)
 Regarding caregiving advice: caregivers
only remember summary statements like
“the psychiatrist said, keep your husband
happy”
 They don’t think their actions affect the
person’s wellbeing (positively or negatively)
© Swapna Kishore, 20148
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9. Inability to locate information/ support
 They don’t know where to learn more about the
disease, medication, caregiving
 Unaware of counselling/ support services
 No access to experience/ stories/ tips of other
caregivers
 No idea how to separate facts from myths
 Which source is authoritative? Whom to ask questions?
 Reluctance to approach any source with the label
“mental health”
 Younger caregivers hesitate to inform elder
caregivers (seems rude)
© Swapna Kishore, 20149
Caregivers may not think they need more information!!
They may not look for better ways to identify patient needs, to
communicate with them, help them, etc.

10. Information from doctors and others
 Doctor visits are short. Families don't register/
remember advice
 After the doctor visit, families don't have material
that reinforces authoritative data on disease, care,
etc.
 Day/ night exposure to other information:
 Friends, relatives, colleagues full of "everyone says"/
"they say" type of advice
 “it’s just ageing”
 Media/ social circle messages that conflate depression
with sadness
 Newspaper hype on miracle cures, traditional cures,
new cures
© Swapna Kishore, 201410
The brief sessions with the doctor are difficult to remember or believe
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11. Caregiver perceptions about situation
 Something wrong with the person caused the crisis
 Contribution of other factors not seen
 No impact of factors like environment, stress, interactions
 Impact of caregiver interactions not seen
 Medicine should solve it/ person should change herself
 Scope and limitations of medicine not understood
 Caregivers assume they should continue to live and interact
with the person as earlier
 (no change required)
 Belief: “Good families instinctively know what patients need
and can cope” x

© Swapna Kishore, 201411
Caregivers need explicit counselling to appreciate their role

12. Unrealistic and
conflicting expectations
from caregivers
© Swapna Kishore, 201412

13. Several assumptions about caregivers
Implicit assumptions of many professionals/ volunteers:
 Caregivers can understand and flawlessly implement advice
after one or two sessions
 Caregiving is the family's main concern (money, time, energy)
 Social pressures don’t matter
 The only problems being faced are the ones that caregivers
mention to doctors/ volunteers
 privacy, shame, diffidence not factored in
 Caregivers can grasp relevant medical terms and concepts
 Anyone can learn and apply caregiving skills
 Handling unwell/ depressed/ dying persons not a problem
© Swapna Kishore, 201413
These implicit assumptions are often unintended and unexamined.
They affect the advice given.

14. Contradictory messages
Ideal, quality of life talk:
Rights of patients
Reality: Patient’s choices
not always acceptable
 Patients should be involved and
informed to the extent possible
 Everyone should respect patient
likes and dislikes
 Patient autonomy should be
respected
 Caregivers should assist, not
dominate
 If patient refuses to visit doctor,
seen as “neglect” by family
 Many instances where patient
choices/ likes/ dislikes are not
accepted
 Unusual food habits, odd dresses,
refusal to meet persons, refusal to go to
day care centre, do exercise, activities,
etc.
 Refusal to accept help/ use attendant
© Swapna Kishore, 201414
Caregivers blamed for all patient actions/ inactions that are
considered inappropriate. etc. Patient unwillingness/ lack of
cooperation is not accepted as a reason. Caregivers are expected to
“explain” to the patient/ “make” them see “reason”, etc.

15. Assumptions influence caregiver advice
 Tell the already-overwhelmed caregiver what "more"
to do, rather than help with "time management" or
suggest "what less to do" or how to prioritize
 Does not factor in of severe problems (e.g. financial
problems or caregiver’s own health), thus making the
advice impractical
 No environment where caregivers can talk openly of
problems or ask questions/ clarify doubts
 Pressure to manage care smoothly
 Induces guilt, inadequacy
 Induces resentment, anger
© Swapna Kishore, 201415
Caregivers may feel alienated and stop seeking help

16. Multiple medical problems
 Elders likely to have multiple health problems, not
just depression, dementia, etc.
 Care involves coordination between multiple specialists
 Typically, no "care team" unless admitted in a hospital
 Many professionals/ facilities don’t know how to
support elders with mental health problems
 Patients may not be able to visit doctors
 Caregivers need to communicate to multiple doctors
and coordinate
 Caregivers need to make decisions for patients who
are uncommunicative/ unable/ unwilling to decide
© Swapna Kishore, 201416
This is very challenging for caregivers, especially because
most of them are not medical persons

17. Emotional difficulties
adjusting
to the caregiver role
© Swapna Kishore, 201417

18. Example: Care situations and outcomes
© Swapna Kishore, 201418
Situation: Family caregiver supports person with dementia
while also handling other roles and responsibilities
Multiple factors influence care situation and ability to support
(e.g., state and progression of disease, other problems, family
situation, caregiver personality, health, emotional make-up, etc.)
Diverse outcomes
Stressful care: Patients
perturbed/ withdrawn more
often. Caregivers
overwhelmed most of the
time. Afterwards, may carry
guilt and regrets.
Extremely unhappy
situation: Repeated
unpleasant episodes,
conflicts. Even later,
caregivers see it as a
black hole in their lives
Smoother care:
Patients relatively
peaceful, satisfied.
Caregivers neutral/
positive most of the
time.

19. Example: Smoother care cases
 They understand that the patient’s
problems are genuine and related to
dementia
 Usually, they faced problems in the initial
stage
 Merely hearing lists of symptoms or “theory”
had not been enough
 They found it helpful to hear several
caregiving stories, spread over time.
Some stories then “clicked” for them
 They began changing their interactions
after this understanding
 They began having fulfilling moments
during caregiving. This reinforced their
use of effective techniques
© Swapna Kishore, 201419
Things improved after we began
using better communication
tools and introduced activities for
the patient
We didn’t really understand
dementia in the beginning.
But after we started
understanding what Appa
was feeling, we found it
easier to see what to
change

20. Example: Stress-filled/ unhappy care
© Swapna Kishore, 201420
Maybe we could have found out
about some better treatment
I was absolutely isolated
The stigma was too much.
We were so ashamed.
Everyone blamed us.
I ended up
neglecting my
teenaged son
Our life was at a
standstill for years
Had we understood
how he/ she suffered,
we would not have
yelled, argued, etc.
He/ she would not listen
to us. We tried but he/
she would not cooperate.
She was physically and
emotionally impossible
to handle.
Caregiving severely
affected other aspects
of their life
They did not relate
changed behavior to
dementia
They felt guilty
because the disease
kept getting worse

21. Typical advice scenario
 Core focus: diagnosis and medication
 Some additional advice available: usually basic information and
essential caregiving skills (communication, assistance in daily tasks)
 Many aspects often not discussed, such as:
 Emotional acceptance of disease and caregiving realities
 Practical tips to adjust to the role and to change lifelong interaction habits
 How to fit caregiving work with other responsibilities
 Isolation, loss, dejection, fatigue
 Handling stigma, criticism, unsolicited advice, diagnosis denial
 Private problems caregivers hesitate to mention, such as
 Incontinence, disinhibition
 Family conflicts, old resentments and unresolved emotional issues
 Legal/ financial disputes
 Severe money problems.
 Sharing responsibility and costs between family members
© Swapna Kishore, 201421

22. Typical support material
 Focus: “how to” (factual, generic)
 Does not acknowledge learning curve,
difficulties, probability of mistakes
 Does not acknowledge emotional cost
of disease and role
 Makes caregiver the “doer” and patient the “object” of
action, hence adds to caregiver’s overwhelming feeling of
responsibility
 Aimed at generic “caregiver” : lacks "bridge" to help
caregivers apply to diverse care situations
 Not available in Indian languages, does not use enough
Indian idiom/ examples
 May not work for lower/ middle class. May not apply in India at
all (e.g., end-of-life-care discussions)
© Swapna Kishore, 201422
Often, full of:
 Do
 Don’t

23. More likely
to be spread
out, with ups
and downs.
May never
reach optimal
level
Unlikely to be
so rapid and
smooth
The underestimated learning curve
 It takes time to appreciate the patient’s problems
 Weeks? Months? Years?
 Caregivers may not reach acceptance before patient
dies
 Lack of emotional acceptance affects ability to learn
and apply essential skills
 Acceptance is patchy, not a smooth, linear path
 Good days and bad, Plagued with doubts, Loops and
reversals
 Social denial of disease reduces openness to learn
 Why learn something that is not considered necessary
 In some conditions like dementia, acceptance is
more difficult because deterioration has been slow
 Resistance also because “caregiver” concept
seems counter to “everyone lives with elders,
what’s the big deal”
© Swapna Kishore, 201423

24. Emotional impact of caregiving
 Patient mood affects caregiver mood
 Isolation worsens this
 Home-bound caregivers are busy, cannot
leave care on others, so unavailable for
company
 Rejected by others as “too boring”, bad/
negative
 In irreversible conditions like dementia
 Difficult to watch patient's decline, no
direction/ hope, just waiting for the end
 Diminished caregiver identity at losing
shared past, not being recognized, and
having no future
 Worse if caregiver is elderly, and/ or spouse of
patient
© Swapna Kishore, 201424
Yet
another
day!!

25. Caregiver depression/ stress very likely
 Isolation/ sense of abandonment by friends/ relative
 Relationship crisis (marriage problems) faced by adult children
looking after elders
 Spouse caregivers feel cheated of their future
 Being told: "Ask for help/ support" does not help
 where are the services that can help?
 do others know how to help?
 "Take care of yourself" advice difficult to implement
 self-care becomes yet another chore
 Inability to handle their own stress/ depression becomes another area
they feel inadequate about
 The more overwhelming the care is, the less likely that a respite can
be arranged

© Swapna Kishore, 201425
At present, detecting and addressing caregiver depression/ stress
are not part of support systems

26. The impact of the social
context
© Swapna Kishore, 201426

27. Social response to diagnosis
 Overall discomfort/ suspicion around mental health problems
 Diagnosis may be denied/ contested in social circles
 Suspicion (grab property after declaring person insane)
 Dismissal (dementia is just ageing, depression is just laziness/
sadness, etc.)
 "Bad family" judgments based on patient complaints
 "Bad person" judgments about patient if character changes
 Poor awareness/ misinformation also means people believe
miracle treatments, exaggerated expectations
 Pressure/ criticism for not getting "right treatment", not "trying hard
enough“
 “She will be normal if you take proper care”
 Friends insist family tries out untested, undocumented “baba”
cures
© Swapna Kishore, 201427
x

28. Society view of caregiver role
 Good children do whatever is needed to handle elder care
 Family must manage all the money, time, energy needed for this
 Other roles/ responsibilities must not affect this responsibility
 Shortfalls: "bad family", not "culture", failing in "duty", no "love“, no
“sanskar”
 No difference between living with elders and caregiving. No need
to learn anything. Caregiving is instinctive, otherwise you don’t love
the care recipient enough
 All talk of problems is negative/ making excuses to evade duty
 Mentioning past issues/ problems/ family conflicts is unacceptable
© Swapna Kishore, 201428
Caregivers may identify with other caregivers when they hear
criticism directed at other caregivers. They may keep quiet about
their own problems fearing they will be criticized, too.

29. Mistrust of adult children
 Safety and wellbeing of elders requires planning and caution against
exploitation and abuse
 Activists and media encourage elders to be alert and ask for help.
 Sometimes there is general suspicion about all adult children
 This adds to caregiver challenges when elders confused/ deluded/
paranoid and make erroneous complaints which are believed socially
 "Shamed" caregivers are stressed and isolated. This affects care.
 Negates the intention to protect elders
 Very common in cases of dementia
 Example: a father-in-law keeps forgetting he ate breakfast and tells
neighbors his daughter-in-law starves him.
 Example: friends tell the patient the diagnosis is a conspiracy to
declare the patient incompetent and grab his property
© Swapna Kishore, 201429

30. Fear of stigma may override care focus
 Even approaching a psychiatrist carries a stigma
 Some types of diagnosis carry major stigma
 Impacts social status of family, marriage,
job prospects of family members
 Label can’t be wiped off once diagnosis is known
 Legal, economic implications not clear, not discussed
 How does diagnosis impact "competence", "power of
attorney", ability to sell property, etc.
 Attempted suicide: will the patient be jailed?
 Family may focus on hiding problem rather than care
 Cannot risk an “insane” label/ "bad character"
 Hide attempted suicide rather than treat depression
 Avoid seeking services/ support/ help of others
© Swapna Kishore, 201430

31. Extremely challenging
situations
(and no place to discuss them)
© Swapna Kishore, 201431

32. Topics often not discussed in public
 Some topics are usually considered awkward, and
avoided. Examples:
 Severe shortage of money
 Internal conflicts and major issues in apparently amiable
families
 Unresolved emotional issues with current care recipient
(control, neglect, favoring other sibling)
 Disinhibition
 Death and dying
© Swapna Kishore, 201432

33. Silence and its implications
 Professionals/ volunteers don’t talk of these issues. Possible reasons
 Not our role/ competence area
 “we can’t do anything anyway”
 Assume these problems are rare (because everyone is silent)
 Caregivers do not bring up issues
 Family stops them from talking to outsiders
 Feel they and their family will be judged/ mocked
 Continued silence affects “implied normal” about situation and
possible discussions
 Problems assumed to be rare
 Hints dropped by caregiver may not be noticed.
 Impact of problems assumed to be minor
 Apparently normal comments end up being insensitive.
 Advice ignores the problems; could be Impractical/ irrelevant

© Swapna Kishore, 201433
Caregivers may feel blamed or angry or disconnected. They don’t
think they are getting any help. They stop contacting professionals.

34. Severe financial problems
 Earning drops (caregivers lose jobs/ have to stop
working)
 Care costs go up as situation worsens. Savings are
depleted.
 Money may be lost as patient makes bad decisions/ gets
cheated
 Investments/ property may be locked because patient
refuses to (or cannot) sell, or other family members don’t
agree
 Cost-sharing between immediate family is not always
possible
 Social status maintenance becomes difficult.
 Other responsibilities (like children's education, other
family member health) may also suffer
 Basic needs start getting affected
 Severe financial problems can create very tense
situations, even an abusive environment
© Swapna Kishore, 201434
₹0.00

35. Unresolved past issues with patient
 Not all patients were loving and
nurturing when younger.
 Patient may even have been an alcoholic/
abuser, wife-beater, or may have harassed
a daughter-in-law for dowry/ caste.
 But now the patient needs care...
 Caregivers with past issues can
experience resentment, disbelief, and
fear. They cannot confide these
problems and feelings.
© Swapna Kishore, 201435
Caregivers with past issues with patients need help to achieve
emotional balance without trivializing their past trauma.

36. 24 x 7 solo caregiving
 Single person handling patient, housework, earning,
etc.
 Other close family members unavailable. They may
be far away or in denial. May even cut off.
 Day and night work, overall fatigue. No slack even
for falling ill.
 May have health problems and financial problems
 Some caregiving work repulsive/ physically hard
 Alone in taking heart-breaking decisions
 Emotions closely linked to patient’s situation and
mood
 Utter isolation, fatigue, burnout
 Scared to even talk as they may lose control
 Dare not think of a break as returning unimaginable
 Terrified of what will happen if they fall ill/ collapse
 Extreme loss/ extreme readjustment problems when
the role ends
© Swapna Kishore, 201436

37. Late stage (end-of-life) care
 Comes when the caregiver is already fatigued after
years of caring
 Volunteers lack relevant experience; most advice is
clichéd / irrelevant
 Often heavy home nursing involved but no guidance
on it—this area falls between cracks of specialists/
doctors
 Need to be alert for medical complications
 Have to decide for someone who cannot explain their
needs
 Care is expensive
 Emotionally perturbing to watch/ support someone
dying
 This fully-dependent stage may drag for years;
caregivers cannot “pace” themselves
 Bereavement is even tougher
© Swapna Kishore, 201437

38. Disconnect between
caregivers and
concerned persons
© Swapna Kishore, 201438

39. Examples of disconnect
© Swapna Kishore, 201439
Why don’t caregivers ask
family and friends for help?
Or use day cares and other
services? They shouldn’t let
themselves get stressed.
Family? My brother doesn’t even return
my calls.
Does he think I don’t know I am
stressed and need a break? Will he
come and look after my father to
give me “respite”?
Has she ever changed the diaper
of an adult? I can’t afford an
attendant or respite care. Which
of my friends will change my
father’s diapers to give me a
break?
Why do caregivers say they
are tired? They chose to be
caregivers.
What choice do they think I had? No
one in the family thinks she needs any
help. Should I have walked out of the
house and left her alone?

40. Examples of disconnect
© Swapna Kishore, 201440
Caregivers don’t love the
patients. They neglect them.
That is why they don’t bring
them for repeated checkups.
Stop blaming me if my mother
doesn’t do something. She
refuses to visit doctors, what am
I to do, tie her and gag her and
take her along? She’s not an
obedient doll.
Last time the trip to the hospital took us
four hours and Amma was totally tired.
She was cranky for days after that. The
doctor just spent five minutes looking at
her papers and gave no medicine, Why
should I take her there again?

41. Examples of disconnect
© Swapna Kishore, 201441
They should spend more
time with their elders.
Activities can make a lot of
difference to the quality of
life of the patients.
They talk as if I have all the time
and money I want. I feel angry but
I can’t admit my money problems
to anyone.
My father was an alcoholic and
would beat up my mother and
me.. Now she and I are looking
after him. I had to leave my job.
My savings are almost wiped
out. I am so, so angry.
Children nowadays
forget how much their
parents sacrificed for
them. They are
selfish. They should
do whatever they can
to make their parents
comfortable
My son has his board exams. My daughter
needs help with her studies. My husband has
diabetic complications. I’m already working
day and night. Where am I supposed to get
the time and energy from?

42. Support systems for
caregivers must
incorporate data from
caregivers
© Swapna Kishore, 201442

43. Caregiver voices are required
 Caregiver input and involvement can improve
systems designed to help them
 Outside India: caregiver blogs, forums, associations,
major online communities with sections devoted to
caregiver stories
 No such public visibility/ sharing environment in India
 We need to locate caregivers of diverse profiles and
help them talk about their issues and challenges
 Disease types, age, socio-economic status, region,
religion
 This requires a systemic effort
 Sporadic input from a few caregivers not enough
© Swapna Kishore, 201443

44. Getting data from caregivers
Caregivers don’t share in public. Reasons they give:
 “Others just don’t understand”
 “I’ve faced enough criticism and lectures”
 “Why should I speak up when no one else does?”
 “My family doesn’t want me to talk about it”
 Even if they feel they should share...
 They are too busy when actively caregiving
 After the patient’s death, past seems painful, and need to “move
on” and “let things be”

© Swapna Kishore, 201444
Effort to gather data has to work around these problems

45. Caregiver input can make support more
effective
 Will improve sensitivity while interacting
 Remarks less likely to be insensitive/ preachy
 Advice may be more relevant and practical
 Can help in:
 Creation of useful services and facilities
 Creation of support forums where caregivers share
experiences and tips
 Design effective awareness and advocacy campaigns
 Give better suggestions for related policies and
frameworks
© Swapna Kishore, 201445

46. Thank you!
© Swapna Kishore, 2014
http://dementiacarenotes.in
Contact: cyber.swapnakishore@gmail.com