Under-discussed challenges of dementia home care in India (Ardsicon2017)

Under-discussed challenges of
dementia home care in India
by Swapna Kishore (cyber.swapnakishore@gmail.com)
International Conference on “Advances in Dementia”
& “XXI National Conference of ARDSI”
22nd, 23rd & 24th September, 2017, Kolkata (India)

Dementia care discussions:
Some serious issues are ignored
• There are many serious challenges faced by home
caregivers that are not acknowledged and
discussed openly.
• Lack of such discussion makes many caregivers
feel isolated and unsupported. General advice
given may be inappropriate and insensitive
• Unintended silences: everyone assumes these
issues are rare
• Open discussions on such challenges will enable
creative approaches and better support.
© 2017, Swapna Kishore 2

There are a wide range of under-
discussed topics
• In this presentation, we discuss four such topics:
• Financial problems
• Situations where caregivers have a past history of being abused
• Lack of support to understand, believe, and begin acting on a
diagnosis
• Lack of explanations and support for late-stage dementia care
• Of course, there are other under-discussed issues
This presentation aims to create some recognition around some
under-discussed serious issues that home caregivers face
Also, for the 90% who remain undiagnosed, issues revolve around
worrisome behaviour and decline, not knowing about progression,
treatment or care. This is a major area, worth a separate discussion by itself
₹

Financial problems
4
₹

Affordability of Care Expenses
• Urban costs for dementia
care range from ₹ 7000 to ₹
14000 per month (Dementia
India Report 2010, Box 3.1)
• Assuming around 30% of its
income is used for
dementia care, the family
requires a monthly income
of ₹ 23,000 to ₹ 46,000
• >97% cannot afford ₹ 7K
• >99% cannot afford ₹ 14K Using: http://timesofindia.indiatimes.com/calculator.cms which
is based on Indian Readership Survey 2011, Q4 data
Only the top 2.24% of India can
handle a care cost of ₹ 7000
(monthly income > 23,000)
Only the top 0.38% of India can
handle a care cost of ₹ 14000
(monthly income > 46,000)

In fact, most families in India earn less
than what a trained attendant gets paid
A caregiver in Mumbai in an interview mentions the
monthly cost of one trained attendant (one shift) as
₹8100 for one month (interview from 2009)[1]
More than 83% of Indian families earn less
than what a trained attendant has to be paid
Using: http://timesofindia.indiatimes.com/calculator.cms which is based on Indian Readership
Survey 2011, Q4 data
6
[1]: https://dementiacarenotes.in/kalpana-interview/
© 2017, Swapna Kishore

Many care costs are unaffordable
In 2011, a household income of just ₹ 23,000/= per
month placed the family in the top 3%
Imagine how each important/ essential
cost would impact a family, for
example:
• Adult diapers, at 2 a day, costing ₹
35 to 50 each, requires ₹ 2100 per
month just for diapers
• A one-way trip in an ambulance
costs ₹ 500 to ₹ 1000 (higher for far
flung areas)
Using: http://timesofindia.indiatimes.com/calculator.cms which
is based on Indian Readership Survey 2011, Q4 data
Caregivers may hesitate to mention
money problems out of a sense of
privacy or shame. But these are very
common problems

And a peep into the neglected rural
India: “92% rural homes run on less than
₹10,000 per month”
From: http://timesofindia.indiatimes.com/india/92-rural-homes-run-on-less-than-Rs-10000-per-month/articleshow/47931716.cms
From a Times of India report of July 4, 2015,
sharing data from the Socio-Economic and
Caste Census (SECC) conducted in 2011-12:
…the Socio-Economic and Caste Census (SECC)
released on Friday says that a staggering 92% of
rural households reported their maximum
income below Rs. 10,000 per month. Nearly
three quarters of all rural household said that
the income of the highest earning member was
Rs. 5,000 or less

Care costs have many components
• Medicines, doctors, nurses, tests
• Reaching medical facilities or paying for
care at home for various medical
problems
• Products like diapers, hygiene and
cleaning products, special food items for
nutrition and hydration, walking sticks,
wheelchair, bed rest, air mattresses,
equipment for care in bed, etc.
• Adjustments needed at home because of
person’s safety/ privacy, etc.
• Costs of paid attendants if used
₹
Income
Costs
This goes on
for many years

Income may reduce because family
members have to take on care work
• Families make many changes to take out time
on for care work. Such changes may reduce
their income
• Most Indian families cannot afford for a trained
helper. So they give up their jobs or switch to
part-time jobs to do the care tasks
• Even with a part-time helper, family members
may have to reduce outside work to manage
care
• Income (and maybe the job) is also lost during
intense care periods and emergencies when
caregivers have to take extended leave
• When caregivers stop work for long periods,
their ability to resume work later also goes
down
I used to work as a
maid in four
houses. But two of
them dismissed me
when I took ten
days leave last
month to look after
my ill mother - they
wanted someone
who would not take
leave…

Reduction in earnings is a common
situation
In a survey of American caregivers conducted by the
Alzheimer’s Association (US), 13% had to go from working
full-time to part-time, 11% had to take a less demanding
job, and 11% had to give up work entirely.
In the 10/66 Dementia Research Group studies in Latin
America, India and China, the median proportion of
caregivers who had given up or cut back on work to care
across 11 sites was 33.3% (interquartile range 22.9-
37.0%).
From: World Alzheimer Report 2013: Journey of Caring -- An analysis of long-term care for dementia (Page 32)


Money management also affects
funds for care
• Sometimes, families lose part of their money because
the person with dementia may have made bad
decisions/ been cheated who took advantage of the
person’s confusion
• Liquidity may be a problem as money may be mainly
locked in investments and property
• Sometimes, the money may be in the name of the
person with dementia, or in joint holdings, which are
not available for care
• For example, the person with dementia may be having
money, but refuses to give the money out of suspicion, or the
person can no longer operate an account, or sell a property

Families make difficult choices
between expenses for various items
These cost-cutting measures impact current and future
prospects of various family members
This often leads to some family members feeling unhappy.
There may be conflict, abuse, and neglect
Even upper-middle-
class families have to
struggle
What can we
cut down?

Families may dip into savings or take
loans to meet expenses
• Dipping into savings reduces
the buffer the family has
against emergencies. Loans
mean EMIs have to be paid
• Families may be driven deeper
into debt and poverty
• For most Indian families,
expenses of extended care
are a setback they find it
very difficult to recover from
14
₹
...An overwhelming 96 per cent of
households feel that they cannot
survive beyond one year on their
current savings in case of loss of a
major source of household income…
Sections 4.4.3, 4.4.4 of How India earns, spends and saves: unmasking the real India / Rajesh Shukla, SAGE Publications (NCAER report of 2010, emphasis added)

Less than 1 per cent of
households that depend on
labour and agriculture as the
main sources of income can
sustain themselves for more than
a year on their savings…


What can we do?
Pranayama and
music therapy
sound nice, but
how do I pay for
my son’s
admission?
• We can discuss duration and costs of
care with caregivers. Ideas can be
shared on things like:
• Ways to budget, invest, and ensure
liquidity
• Ways for continue earning even after
caregivers are busy and home-bound.
• Ways to share costs with relatives
• Ways to reduce costs for care work, home
modifications, essential care products,
etc.

What can we do?
• We need to work vigorously on actions like getting
subsidised medicines and supplies, get tax cuts,
sponsorship for families coping with dementia, setting
up free day cares, appropriate employment
opportunities, etc.
• In the initiatives for spreading dementia
awareness and supporting care, we must not
forget rural India!
• Not only do they face severe problems of poverty and
unemployment, it is also much more costly and time-
consuming for them to reach places where they can get
medical help, information, etc.
• We must stop treating dementia as a problem of the urban,
advantaged classes… an implicit choice we make in how we
choose initiatives

Issues of Past Abuse

Possible history of abuse between the
person with dementia and the caregiver
• The person who now has dementia
may have abused the caregiver in
the past
• A caregiver who has been hurt and
damaged by past abuse may find it
difficult to adjust to a caregiver role
• In cases where the abuse was
severe, it may be unrealistic and
unfair to expect the caregiver to
provide intense care for many years
Problems of abuse when
younger
Then the person
gets dementia
(Examples: physical/
emotional/ sexual child
abuse, domestic violence,
dowry problems, etc.)

Abuse is far more common than we
want to notice
• Abuse happens at all levels:
• Child, young adult, adult, elders
• Boy, girl, man, woman
• Different types commonly talked about:
• Child abuse: physical, emotional, sexual, girl-child
neglect
• Women and partners: Domestic violence, Intimate
Partner Violence
• Dowry problems
• Surveys show that these are quite significant in our
society

Take the example of physical abuse
of a child
• 48.8% of young adults (age 18-24 years)
said in a survey that they had been
physically abused in childhood
• Type of abuse reported:
• Included 36.0% being beaten by stick and 7%
being kicked
• Majority reported the abuse was on several
occasions, or even frequent
• 60.35% were abused by parents
• 13.57% said that the physical abuse left
permanent marks on their body. 12.56% had
needed medical treatment
Data and quotes above from Study on Child Abuse, 2007, Ministry of Women and Child Development, Government of India, 2007
The young adult respondents were both male and female, largely educated, around 49% being graduates or above
every tenth
young adult
respondent from
the study sample
was subjected to
physical abuse of
a serious nature


Or consider domestic violence
• A published study[1] reported that nearly two in five
(37 percent) married women have experienced some
form of physical or sexual violence by their husband
• The study reports that almost two in five women who
experienced physical or sexual violence reported they
had injuries
• 36 percent had cuts, bruises or aches;
• 9 percent had eye injuries, sprains, dislocations, or burns
• 7 percent had deep wounds, broken bones, broken teeth, or
other serious injuries
[1] From Briefing kit, “Domestic Violence”, which uses data from Chapter 15 of International Institute for Population Sciences
(IIPS) and Macro International. 2007. National Family Health Survey (NFHS-3), 2005–06: India: Volume I. Mumbai: IIPS.

We ignore the ‘abuse’ aspect in
caregiver support
• Training programs and manuals don’t include tools and
techniques to help caregivers overcome past emotional
scars
• We do not discuss abuse openly because of social
conventions and family pressures
• Social media, sessions with volunteers, news articles,
social circles near us, assume that there was no past
abuse. Instead, we hear statements like :
• Our parents always loved us. Now it is our turn to care for them
• Our parents made so many sacrifices so that we could get what
we wanted
• Perfect love and perfect parenting is assumed to be
universal. Severe abuse in the past is not even considered
as a possibility

Caregiving is tougher for a caregiver
who was abused
• The hurt, pain, humiliation, and loss of self-esteem caused by
abuse lasts for years
• Though abused persons may continue to keep some contact
and interactions to maintain “normalcy” in social
appearances, this does not mean they can handle care work
• The continued contact required during caregiving can bring up
multiple reminders of past hurts
• This can make care stressful even for someone who suffered mild
abuse that others expect them to “forget and move on”
• Those who suffered severe abuse may find it impossible to
care for their past abuser
Given the shroud of silence and disapproval around any mention of past abuse,
who can caregivers ask for support when they are overwhelmed by past
experiences?

When I was young my
uncle had tried to rape
me, and no one in the
family believed me. Now,
Uncle has dementia, and
he has no children – and
my family expects me to
share the caregiving. This
is extremely difficult.
Examples from conversations with
caregivers
All through my childhood, my
parents favoured my brother
and I was called a burden
because I was a daughter.
Now, though I am doing the
care, they still value him
more though he doesn’t even
visit.

Examples from conversations with
caregivers
Father used to beat my mother and me when he
was drunk. Now I and my mother have to look
after him. I don’t want to, but my mother says it is
her duty. There is no one else to look after him. I
help her because I can’t let her do it alone. I am
living with them. My marriage has broken
because of this. I am very stressed.

Caregivers may feel judged and
unsupported, and hence withdraw
• Caregivers usually don’t feel comfortable talking about their
past experiences, especially if they hear a lot of “our parents
always love us” statements.
• When some caregivers use veiled mentions to start the topic,
like “he was always very angry with us”, they feel silenced by
typical responses. They may stop sharing their real problems
• Some examples of responses: “he did it because he loved you and
wanted you to be the best”, or “forget the past, he is your father, it
is your duty” , “be positive and loving”, “do your dharma”
Caregivers who were severely abused in the past may
end up withdrawing. They may thus get the least
support

What can we do?
• We need to create safe discussion spaces that
encourage and support caregivers to talk about their
real issues
• We should not assume perfect family history. We need to stay
clear from generation-bashing/ daughter-in-law bashing
statements.
• Listening is important. This will ensure any suggestions we
give are more relevant.
• If the caregiver seems to hesitate, we can gently try to get a
better understanding of the family dynamics.
• Our training programs and material can include
suggestions for caregivers facing issues because of their
past.

Lack of support to
understand, believe, and
begin acting on a diagnosis

There is a time-gap between getting a
diagnosis and modifying the care
approach for the person
• Families take time to understand and believe a diagnosis,
and to start looking for ways to modify their care
approach. In fact, they may ignore the diagnosis for years,
or even forever
The underlying disease gets progressively worse. The symptoms get worse.
The environment and way of helping need more and more
adjustments to be suitable for the person
Diagnosis is often only in
mid-stage dementia
Family members accept the
dementia and try to give suitable
care
We don’t help families minimise or close this gap.

The ‘dementia’ diagnosis/ label
• How people respond to a diagnosis depends on:
• Their familiarity with the word “dementia” (or “Alzheimer’s”)
• Their information and impressions about dementia
• Internationally, getting a diagnosis brings aspects like
• Positive reactions on getting a diagnosis are around some relief
at getting an explanation for the problems being faced
• Negative reactions on getting a diagnosis are around despair
and also reactions of others: the person is “not quite there”
attitude, loss of personhood and respect almost overnight
• Fear of a dementia diagnosis is another factor: US/ UK reports
have said this is greater than the fear of developing cancer,
heart disease, diabetes or stroke[1]
[1]: World Alzheimer Report 2011, The benefits of early diagnosis and intervention

Our awareness affects how we
understand and act on a diagnosis
• In India, only a small fraction of persons get
diagnosed. People view the label “dementia” from
the prism of poor awareness and inadequate
vocabulary:
• Very low levels of familiarity with the word dementia/
Alzheimer’s, and no mental image of what to expect
• Use of Indian language equivalents that don’t convey
the seriousness of the situation, or may stigmatize it
• A lot depends on how the doctor/ volunteer
explains it, how shocked the family is, and whether
the doctor/ volunteers stay in touch with the family

A typical scenario of when the
family hears “dementia”
Most families have not heard the word “dementia”
or “Alzheimer’s” when they get the diagnosis. This is
true even of educated, English-speaking, middle-
class families.
We were not aware of the name Alzheimer’s
Disease. We did not even have a vague idea
about how bad and scary our lives would be,
going forward[1]
[1] from a caregiver narrative in Dementia News - ARDSI Newsletter, January - April 2017


A major problem: how dementia is
explained in Indian languages
For example, the diagnosis may be conveyed using
stigmatizing words
When my mother was diagnosed with Alzheimer dementia, we had
never heard those words before. We asked the doctor for the disease
name in Hindi. He hesitated for some time, but when we insisted, he said
“paagalpan.” We were shocked.
After we returned home, my brothers made sure my mother remained
well-hidden from outsiders. We could not let others know we had
insanity in our family.
(From a conversation with a son in a middle-class Hindi-speaking family about a visit to a senior specialist in a reputed hospital in a metro.)

There are many ways dementia is
translated; some are stigmatizing
• For example, the authoritative word for
dementia in Hindi is either “dementia” or
“manobhransh” – neither of these is well-
recognized.
• The alternate terms used instead can be
quite damaging
• Unfortunately, the most common Hindi
translation is paagalpan (madness)
May 2017 screenshots from Commission for Scientific & technical Terminology http://cstt.nic.in/index.asp & Google translate http://translate.google.com/)

Or translations can be mild phrases
that create a different problem
• Take Alzheimer’s. This has no Hindi equivalent as it is a person’s
name, so we just write “Alzheimer’s” in Devanagari script for it.
• But various awareness campaigns have established the Hindi
equivalent for AD as “bhoolne ki beemari” (the disease of
forgetting). This is the same Hindi phrase as is used for amnesia.
• This “amnesia” equivalence is also true of other Hindi words for dementia/
AD
• Not surprisingly, I get queries from college students facing memory
problems
Playing around at Google translate http://translate.google.com/ (May 2017)

Sometimes families depend on local
terms used for changed behaviour
Commonly used Indian language terms used for the
changed behaviours seen in dementia don’t indicate
any underlying medical condition. They usually indicate
things like memory loss, changes associated with
becoming old, and insanity
Konkani: ‘Nerva frakese’
(tired brain)
Malayalam: ‘Chinnan’
(childishness)
Examples of words used in India for changed behaviors seen in dementia. They do not recognize
that these behaviors could be caused by an organic disorder/ medical problem.
(based on multiple sources, including the 10/66 Dementia Research Group)
Hindi: ‘sathiyaana’:
(getting 60+ and hence
“senile”)

Even English-speakers may be familiar
with “dementia” through negative uses
Unfortunately, the close association established between
dementia/ Alzheimer with forgetting/ confusion and with mental
illness has resulted in the words being used in normal language
while depicting confusion and forgetfulness.
Here, for example, are some phrases from essays on
utterly unrelated topics: “When the establishment is going senile,
it feels everyone else has Alzheimer’s.” or “If you have been lucky
to encounter such an odd creature, what do you think is wrong
with him? Senile dementia?”
Worse, dementia and Alzheimer are used to mock people,
especially politicians. In one instance, some workers of one party
sent Alzheimer pills to a senior leader of another party as a
“unique” protest.
From a study of 650+ articles published in India’s top 3 English and top 3 Hindi newspapers, detailed in a two-part blog entry. Above
excerpts are from Part 2, https://swapnawrites.wordpress.com/2016/02/04/newspaper-coverage-dementia-india-part-2/
Would people send diabetes medicines to mock
political opponents?


The doctor’s explanation is often
inadequate for the family
• Typically, initial doctor sessions are short. The information
conveyed is usually just the diagnosis name, a bit on early
symptoms, and a prescription. Caregiving tips, or pointers to
care support resources are missing.
• As families are unfamiliar with dementia, they cannot
understand or retain much of what they are told. Their
subsequent behavior depends on what they remember, how
well they understand and trust the diagnosis, the responses
and expectations everyone has, etc.
• We have no system to ensure the family’s continual
engagement with a doctor or with the health care system.
Families need multiple sessions to absorb the information about
dementia and to start the slow process of accepting and adjusting.

For mild symptoms, the diagnosis
may not convey seriousness
• Sometimes, doctors explain dementia using terms
like “age-related problem”, “happens to people
who grow old”, “seen in many old people”.
• If the symptoms are relatively mild, families
assume this means the problems are part of
normal ageing. They may not consider the
diagnosis serious.
• Based on this initial explanation, families do not
think of this as a progressive disorder. They expect
the medicine will solve it. They don’t try to find
out more or plan more.
• When the improvement due to medication tapers off,
they start hunting again, thinking that the initial
diagnosis or medicine was wrong.


But often, the family is dissatisfied
with the diagnosis
• In most situations, the families contact doctors because
they faced some serious problems. They had not gone
to the doctor for what they considered normal ageing
problems.
• Examples of problems that lead to diagnosis-seeking: the
person gets lost and confused in familiar settings, acts very
uncharacteristically violent or cannot do even simple tasks.
• The family wants medicines that will change back the
behaviour to “normal.
• If the explanation of the diagnosis or the treatment
does not meet what the family hoped for, they are
dissatisfied with the diagnosis.
💊

For worrisome symptoms, an extended
search for a cure is common; it uses up
too much time and exhausts the family
Dissatisfied families keep looking till they find a cure that makes
everything “normal” again. Outsiders, too, expect the family to
keep looking for a “cure.” The resulting extended search goes well
beyond seeking a second opinion, and is exhausting. Only when
all avenues seem exhausted do families accept the diagnosis.
Shafia said, “Wherever anyone
would say, we would show him. We
showed him here, we showed him
there, there was no place we left or
where we did not show him.”
…Nina… made Karamjit undertake
speech therapy, yoga, golf and
reading and writing, in addition to
giving him allopathic, Ayurvedic
and herbal treatments….
From Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath (Orient Blackswan Pvt Ltd, 2014)
 
Shafia herself conceded, ‘[When] no one said he was going to get
better, that was it.’

How outsiders respond affects what
the family does
• Relatives, friends, neighbours, and
colleagues react to the diagnosis
based on things like:
• perception of the symptoms and the
family’s care
• their knowledge (or ignorance) about
dementia
• their overall impression of families
where adult children are looking after
elders
• Perceptions of how outsiders may
react, in turn, affect how openly
the family shares the diagnosis
If the diagnosis is perceived
as a label of “paagalpan”,
for example, the family will
probably hide the diagnosis
and the person. They will
be worried about the
family’s social standing,
marriage prospects,
employability, etc.

Outsider reactions are diverse
For example:
• They may be dismissive about the problems and the need of
any diagnosis, especially if the visible symptoms are mid
• They may feel the problems are because the family is not
taking good care, and see continuing problems as continued
neglect or cruelty by the family
• They may see the problems as a sign of neglect, lack of love,
or even cruelty by the family
• The diagnosis may be seen as “incorrect” and outsiders may
feel the family needs to look for a “better diagnosis”, one
which has a cure
• The diagnosis may be viewed with suspicion, as an attempt
of a family being greedy or covering up neglect

Disbelief and suspicion around the
“dementia” diagnosis is common
General suspicion around adult caregivers, fear of
elder abuse, and a diagnosis being seen as “mental”
can make things really difficult socially
I have a medical certificate of the psychiatrist who
has been attending to Father. When I told my
relatives about it, they said I must have influenced
or bribed the psychiatrist to give such a certificate
and that I was trying to get Father declared mentally
unfit to get his money.
(from a caregiver interview at https://dementiacarenotes.in/nayantara-interview/ )


Outsiders often ignore the diagnosis
and either blame the adult children or
blame the person with dementia
• A diagnosis may not change how outsiders treat the
person or family
• For example, if father-in-law with dementia keeps
forgetting he ate breakfast and tells neighbours his
daughter-in-law starves him, they assume this is a case
of elder abuse.
• Outsiders may also mistreat the person with
dementia
• For example, if the person is disoriented, aggressive,
withdrawn, or showing socially unacceptable behaviour
like using bad language or sexual misbehaviour
• Lack of acceptance by outsiders adds to the pressure
of family caregiving

Cruel
Greedy
Negligent
Crazy
Stubborn
“Not there”
Outsiders have no incentive to understand the diagnosis or
change their interactions with the person and family

What can we do?
• Families getting a diagnosis should be helped to
appreciate the seriousness of dementia and its
impact without being alarmed or fearing stigma.
Repeated explanations and counselling are needed.
• We need to stay in touch with diagnosed families to
help them absorb the information, and to resolve
queries and doubts caused by the myths and
misinformation around dementia in society.
• We need good, standard, well-understood ways to
explain dementia in terms of what Indian society
understands. We also need these in Indian languages.
• Also, in general, better dementia awareness in society
may reduce societal pressure on the family.

Late stage care
• This is an inevitable, final phase of dementia.
• By this stage, the person with dementia is almost totally
dependent on caregivers.
• The person is mostly confined to a wheelchair or bed. Cognitive
impairment is severe. There are physical complications. Problems
faced by the person include problems in eating and swallowing,
bladder and bowel incontinence, inability to communicate, inability
to recognize people and familiar objects, breathing difficulties,
respiratory infections, etc.
• Other major diseases and medical complications may also be
present.
• In order to handle care for late-stage persons, caregivers
need to know about it and prepare for it. They need to be
either able to do it at home, or find suitable places they can
place the person in for such care.

Where do persons in advanced
dementia stay?
• In high-income countries with
better support for dementia
• many advanced stage persons live
in full-time care facilities suitable
for persons with dementia
• For home-care , many services,
such as palliative care and
emergency support and support
for hospital trips are available
Estimates of the
proportion of all people
with dementia living in
care homes in high income
countries vary from 30-
40% in the USA, 35-50% in
the UK and 50% in Canada
From: World Alzheimer Report 2013:
Journey of Caring -- An analysis of long-
term care for dementia (Page 33)


What are the options in India?
• Typical old age homes and private care
homes do not accept persons with
dementia
• Private facilities usually have admission
criteria that state that they will only accept
persons who are mentally competent
• So, persons in advanced dementia
either continue to stay at home, or be
placed in one of the extremely few
facilities designed specifically for
persons with dementia
Outside India, the
picture seems very
different. As per the
ADI report 2013,
“There is evidence to
suggest that, among
users of long-term
care, people with
dementia are over-
represented among
care home residents.”
From: World Alzheimer Report 2013:
Journey of Caring -- An analysis of long-
term care for dementia (Page 33)

Negligible full-time care capacity
compared to the demand
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41 lakh elders
had dementia
Less than 2000
Care centre (day-care
plus full-care)
capacity was:
In India, in 2015
Figure adapted from the infographic, Dementia in India, 2015
https://www.slideshare.net/swapnakishore/dementia-india-2015-infographic
In almost all cases, therefore,
late-stage dementia care is
done at home by family
caregivers
However, support like
palliative care support or
other required home health
services suitable for
dementia are negligible,
expensive, and very localized
in availability

Late-stage care poses special
challenges
• Families are already stressed after years of caregiving. They are
low on money and energy. But care at this stage needs more
attention and money.
• Caregivers need new skills for this care. They have to do home-
nursing for someone almost fully dependent and cannot explain
their needs. They have to set up the home for such care.
• Situations needing medical attention are frequent and difficult to
handle due to fragility and reduced mobility. For example:
• Regular check-ups, tests
• Treatments for infections, dehydration, etc.
• Major problems that require trips to the hospital
• Multiple medical conditions and coordination between specialists
• Need for end-of-life decisions
• Visible deterioration and closeness to death – this can be very
draining emotionally. Bereavement is tough to handle.

Alas, late-stage dementia is rarely
covered in articles & awareness talks
Published newspaper articles mostly talk of memory loss, and
sometimes of some changed behaviours seen in early and
mid-stage dementia. Late-stage dementia’s extreme
dependence and physical complications are not mentioned.
Many aspects of dementia were
neglected in almost all articles, such as
the duration, progressive nature, the
changed and difficult behaviour,
possibility of early onset, possibility of
initial symptoms other than memory loss,
increased dependence and reduced
mobility in later stages, etc.
For example, some articles said things
like “a person may even forget the names
of family members” as if that was the
worst that could happen, and ignored
problems of later stages, like persons not
being able to do even simple tasks,
incontinence, inability to swallow,
becoming bedridden, etc.
From a study of 650+ articles published in India’s top 3 English and top 3 Hindi newspapers, in a two-part blog entry. Excerpts, emphasis
added, are from Part 2, https://swapnawrites.wordpress.com/2016/02/04/newspaper-coverage-dementia-india-part-2/
 

Many families are unprepared for
this phase
• Decline to this stage is sometimes abrupt, such as after a serious
infection, etc. Unprepared families are taken by surprise, and
struggle to handle it
• They may not have decided which family member will handle this
(which house, which sibling)
• Cost-sharing may not have been discussed
• Information-seeking for decisions regarding end-of-life discussions may
not have taken place
• They don’t know home nursing
• Volunteers are unable to support this stage as they have very
little experience of this. Advice, if any, is superficial and cliched
• Because the person needs 24x7 care, the caregiver may get
isolated from support groups and others
• This phase may last for years. Families may not be able to pace
themselves for it

What we can do
• Given that, in India, late-stage care will most probably
be done at home, we need to alert families in time to
understand and prepare for this stage
• This includes explaining the symptoms at this stage, the
preparation and skills needed for care, the discussions the
family needs to have in advance, etc.
• We also need to help families put together whatever
support for care they can get for this stage depending
on their means and their location, etc.
• We can share data and suggestions to help them make
difficult decisions and get palliative care
• Another area is counselling to ease the emotional
stress and grief of late-stage care

We need to be open about
discussing diverse care
situations, so that we can
support them better

Many of us are concerned about
dementia caregivers
• We know caregiving is stressful and overwhelming
and want to help
• There are many areas we address through
awareness programs, when talking to caregivers,
designing interventions, creating services, etc.
• Typical areas are basic awareness of initial symptoms
of Alzheimer’s, and training programs covering topics
like communication, helping persons with dementia,
and person-centric care, etc.
• The reach of most such work is educated families who
are middle-class and above, typically living in state
capitals

However, our efforts have limited reach
and limited applicability given the
diversity of care situations
• Caregiving situations are far more diverse that what
we implicitly assume when trying to support
dementia care
• Most caregivers of persons with dementia do not even
get a diagnosis and they don’t know the person has
dementia
• They may not have understood the diagnosis
• They may have a diagnosis, but the available advice and
suggestions are inapplicable to them given the realities of
their lives

By opening up to the range of care
situations, we can support a wider
section of dementia care situations
• This presentation briefly covered some areas usually ignored
when trying to support caregivers. There are other such
topics.
• Some examples: Families facing very challenging behaviours like
sexual misbehaviour and disinhibition, major physical violence, etc.,
families with major internal conflicts, medically complicated
situations, situations where families cannot find a way to balance
between multiple important responsibilities, etc.
• We need to create spaces where we can listen to families
facing the currently under-discussed and under-supported
problems. This will enable generating solutions and
suggestions more feasible and applicable to a larger section
of families living with dementia.

Let us, then, open our hearts and our discussion
spaces to diverse care situations…
…and also remember that we too are,
or will be, affected by how open we
are in addressing caregiver issues…
It is said that “there are four kinds of people in the
world; those who have been caregivers, those who
currently are caregivers, those who will be caregivers
and those who will need caregivers.”
from Shaji K S, Reddy M S. Caregiving: A Public Health Priority. Indian J Psychol Med
2012;34:303-5

Thank you!
61
English site for dementia caregivers in India: dementiacarenotes.in
Hindi site for dementia caregivers: dementiahindi.com
Blog for sharing personal experiences: swapnawrites.wordpress.com
Videos: www.youtube.com/user/swapnawrites,
www.youtube.com/user/dementiacarenotes
Presentations and documents: www.slideshare.net/swapnakishore/
Presentation by Swapna Kishore
Email: cyber.swapnakishore@gmail.com
Main website: dementiacarenotes.in

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