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Caregivers: Issues and Challenges Faced
(GERON 2014, Kolkata, India)
by Swapna Kishore
( cyber.swapnakishore@gmail.com)
Th...
Care situations vary widely
 Problems vary...
 Medical conditions and behavior changes are different
 Families differ.....
Some broad categories of issues
 Problems due to poor awareness and lack of information
 Unrealistic and conflicting exp...
Problems due to poor
awareness and lack of
information
© Swapna Kishore, 20144
Absence of a diagnosis
 Poor awareness impact: family does not think
changed behavior is because of any medical problem
...
Crisis driven diagnosis/ treatment
 Crisis prompts consulting a doctor
 E.g., violence, wandering, stopping to eat, suic...
Identifying and staying in touch with
caregivers...
 How are caregivers identified?
 Diagnosis time
 Survey of communit...
Example: what dementia caregivers retain
 Regarding diagnosis and initial sessions:
 Most don’t remember specific diagno...
Inability to locate information/ support
 They don’t know where to learn more about the
disease, medication, caregiving
...
Information from doctors and others
 Doctor visits are short. Families don't register/
remember advice
 After the doctor...
Caregiver perceptions about situation
 Something wrong with the person caused the crisis
 Contribution of other factors ...
Unrealistic and
conflicting expectations
from caregivers
© Swapna Kishore, 201412
Several assumptions about caregivers
Implicit assumptions of many professionals/ volunteers:
 Caregivers can understand a...
Contradictory messages
Ideal, quality of life talk:
Rights of patients
Reality: Patient’s choices
not always acceptable
 ...
Assumptions influence caregiver advice
 Tell the already-overwhelmed caregiver what "more"
to do, rather than help with "...
Multiple medical problems
 Elders likely to have multiple health problems, not
just depression, dementia, etc.
 Care inv...
Emotional difficulties
adjusting
to the caregiver role
© Swapna Kishore, 201417
Example: Care situations and outcomes
© Swapna Kishore, 201418
Situation: Family caregiver supports person with dementia
w...
Example: Smoother care cases
 They understand that the patient’s
problems are genuine and related to
dementia
 Usually, ...
Example: Stress-filled/ unhappy care
© Swapna Kishore, 201420
Maybe we could have found out
about some better treatment
I ...
Typical advice scenario
 Core focus: diagnosis and medication
 Some additional advice available: usually basic informati...
Typical support material
 Focus: “how to” (factual, generic)
 Does not acknowledge learning curve,
difficulties, probabi...
More likely
to be spread
out, with ups
and downs.
May never
reach optimal
level
Unlikely to be
so rapid and
smooth
The und...
Emotional impact of caregiving
 Patient mood affects caregiver mood
 Isolation worsens this
 Home-bound caregivers are ...
Caregiver depression/ stress very likely
 Isolation/ sense of abandonment by friends/ relative
 Relationship crisis (mar...
The impact of the social
context
© Swapna Kishore, 201426
Social response to diagnosis
 Overall discomfort/ suspicion around mental health problems
 Diagnosis may be denied/ cont...
Society view of caregiver role
 Good children do whatever is needed to handle elder care
 Family must manage all the mon...
Mistrust of adult children
 Safety and wellbeing of elders requires planning and caution against
exploitation and abuse
...
Fear of stigma may override care focus
 Even approaching a psychiatrist carries a stigma
 Some types of diagnosis carry ...
Extremely challenging
situations
(and no place to discuss them)
© Swapna Kishore, 201431
Topics often not discussed in public
 Some topics are usually considered awkward, and
avoided. Examples:
 Severe shortag...
Silence and its implications
 Professionals/ volunteers don’t talk of these issues. Possible reasons
 Not our role/ comp...
Severe financial problems
 Earning drops (caregivers lose jobs/ have to stop
working)
 Care costs go up as situation wor...
Unresolved past issues with patient
 Not all patients were loving and
nurturing when younger.
 Patient may even have bee...
24 x 7 solo caregiving
 Single person handling patient, housework, earning,
etc.
 Other close family members unavailable...
Late stage (end-of-life) care
 Comes when the caregiver is already fatigued after
years of caring
 Volunteers lack relev...
Disconnect between
caregivers and
concerned persons
© Swapna Kishore, 201438
Examples of disconnect
© Swapna Kishore, 201439
Why don’t caregivers ask
family and friends for help?
Or use day cares and...
Examples of disconnect
© Swapna Kishore, 201440
Caregivers don’t love the
patients. They neglect them.
That is why they do...
Examples of disconnect
© Swapna Kishore, 201441
They should spend more
time with their elders.
Activities can make a lot o...
Support systems for
caregivers must
incorporate data from
caregivers
© Swapna Kishore, 201442
Caregiver voices are required
 Caregiver input and involvement can improve
systems designed to help them
 Outside India:...
Getting data from caregivers
Caregivers don’t share in public. Reasons they give:
 “Others just don’t understand”
 “I’ve...
Caregiver input can make support more
effective
 Will improve sensitivity while interacting
 Remarks less likely to be i...
Thank you!
© Swapna Kishore, 2014
http://dementiacarenotes.in
Contact: cyber.swapnakishore@gmail.com
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Geron 2014: Caregiver Issues and Challenges by Swapna Kishore (Kolkata, India)

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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/

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Geron 2014: Caregiver Issues and Challenges by Swapna Kishore (Kolkata, India)

  1. 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. 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. 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. 4. Problems due to poor awareness and lack of information © Swapna Kishore, 20144
  5. 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. 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. 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. 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 xxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxx qra aa xx xx xzy
  9. 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. 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 xxxxxxxxxxxxxxx xxxxxxxxxxxxxx xxxxxxxxxxxxxx xxxxxxxxxxxxxx
  11. 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. 12. Unrealistic and conflicting expectations from caregivers © Swapna Kishore, 201412
  13. 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. 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. 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. 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. 17. Emotional difficulties adjusting to the caregiver role © Swapna Kishore, 201417
  18. 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. 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. 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. 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. 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. 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. 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. 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. 26. The impact of the social context © Swapna Kishore, 201426
  27. 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. 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. 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. 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. 31. Extremely challenging situations (and no place to discuss them) © Swapna Kishore, 201431
  32. 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. 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. 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. 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. 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. 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. 38. Disconnect between caregivers and concerned persons © Swapna Kishore, 201438
  39. 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. 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. 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. 42. Support systems for caregivers must incorporate data from caregivers © Swapna Kishore, 201442
  43. 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. 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. 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. 46. Thank you! © Swapna Kishore, 2014 http://dementiacarenotes.in Contact: cyber.swapnakishore@gmail.com

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