Dementia Home Care in India: Overview and Challenges ARDSICON 2015

Dementia Home Care in India:
Overview and Challenges
by Swapna Kishore (cyber.swapnakishore@gmail.com)
http://dementiacarenotes.in
Presentation for the 19th National Conference of ARDSI
(Alzheimer’s and Related Disorders Society of India)
December 4 and 5, 2015 at Mumbai, India
...because most dementia care happens at home

Topics
© 2015, Swapna Kishore 2
Dementia prevalence. Support available. Expectations around the family
Handle stress.
Do self-care.
Understand and accept
situation
Learn, apply, & refine
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
Overview of dementia & care
The family situation and constraints

About this presentation
• This presentation will be made available online at
http://www.slideshare.net/swapna.kishore
• Contact me at cyber.swapnakishore@gmail.com
• The presentation is intended for home caregivers as
well as volunteers supporting dementia care in India.
✉

Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
OVERVIEW OF DEMENTIA &
CARE

What is dementia?
Dementia is a syndrome,
usually of a chronic or
progressive nature, caused
by a variety of brain
illnesses that affect
memory, thinking,
behaviour and ability to
perform everyday activities
(WHO report: Dementia: A Public Health Priority; emphasis added)
Syndrome: group of symptoms that
characterize a condition (But not
everyone may show all symptoms or
the same intensity)
Affect memory, thinking, behaviour,
etc. : Not just mild forgetfulness seen
in old age. Affects everyday life.
Brain illnesses: Symptoms happen
because of illnesses that affect the
brain. Alzheimer’s Disease is one of
them, but there are many others. Cause
is “illness” not poor will-power
Chronic: Continues for a long time.
Progressive: Symptoms keep getting
worse.

Brain illnesses cause dementia
Alzheimer’s disease is the most common form of
dementia and possibly contributes to 60–70% of cases.
Other major contributors include vascular dementia,
dementia with Lewy bodies, and a group of diseases that
contribute to frontotemporal dementia.
(WHO report: Dementia: A Public Health Priority)
Brain images courtesy: ADEAR (Alzheimer’s
Disease Education and Referral Center)

Brain illnesses cause dementia
Alzheimer’s disease is the most common form of
dementia and possibly contributes to 60–70% of cases.
Other major contributors include vascular dementia,
dementia with Lewy bodies, and a group of diseases that
contribute to frontotemporal dementia.
(WHO report: Dementia: A Public Health Priority)
Chronic and progressive
...currently no cure for Alzheimer's disease or for
most other causes of dementia. Nor can a cure
be expected in the near future. Researchers
....still do not know how to prevent the disease
from occurring, how to stop its progression, or
how to reverse its effects.
(http://www.alz.co.uk/info/faq#cure, Nov 2015, emphasis added)
💊🚫
Brain images courtesy: ADEAR (Alzheimer’s
Disease Education and Referral Center)


Cannot be reversed
Cannot be stopped

Dementia symptoms & stages
• Many possible symptoms.
– Different persons show different symptoms
– Type and intensity of symptoms depend on the underlying illness
– Symptoms and their intensity get worse when the illness progresses

• Broad stages
– Early stage: Symptoms seem similar to old age.
Possible symptoms: forgetfulness, disorientation, difficulty finding the right
words, problems making decisions or doing difficult tasks, mood and behavior
changes

Get worse as underlying brain illness gets worse

• Broad stages
changes
– Middle stage: Symptoms are more obvious.
Examples: More forgetful. More need for help in various tasks. More visible
behavior changes. May not recognize familiar persons and objects. Increasing
dependence. Communication is difficult.


• Broad stages
changes
– Middle stage: Symptoms are more obvious.
Examples: More forgetful. More need for help in various tasks. More visible
behavior changes. May not recognize familiar persons and objects. Increasing
dependence. Communication is difficult.
– Later stage: Person is almost fully dependent for everything.
Examples : Incontinence. Mobility problems. Communication very poor. Even
unable to tell when not well. Eating and swallowing problems. Other medical
problems increase.

When someone has dementia...
The brain illness continues to damage the brain.
Medications cannot stop or reverse this damage
Chronic and progressive .....

If diagnosis is obtained (this happens in only 10% of the
cases), some drug or non-drug treatment is possible.
Early diagnosis gives more “benefits of diagnosis.”

Most families live through this without knowing about dementia.
Caregivers may be young or old, mostly female but could be male.
They usually live with the person, but could also be living at a
distance. Sometimes caregiving is shared by taking turns.
If diagnosis is obtained (this happens in only 10% of the
cases), some drug or non-drug treatment is possible.
Early diagnosis gives more “benefits of diagnosis.”

Person gets worse as the brain illness gets worse


When does “care” start?

Somewhere along the dementia journey, the family members
become caregivers whether they know it or not

When do families realize the problem is serious? When do
they start switching from “living together” to “taking care”?
When do they start....
• Seeking diagnosis?
• Planning for years of care?
• Actively looking for information, solutions, and help?

Before the diagnosis
• No diagnosis, wrong diagnosis, late
diagnosis
– No understanding or advice about
dementia
– Stigma for person or family
common. Social isolation.
– No drug or non-drug treatments
– Family continues usual interactions
and expectations continue. This
makes the situation worse
• Most persons don’t get a
diagnosis
• Those who get diagnosed often get
the diagnosis late

Before the diagnosis
• No diagnosis, wrong diagnosis, late
diagnosis
– No understanding or advice about
dementia
– Stigma for person or family
common. Social isolation.
– No drug or non-drug treatments
– Family continues usual interactions
and expectations continue. This
makes the situation worse
• Most persons don’t get a
diagnosis
• Those who get diagnosed often get
the diagnosis late
All through this, the family may
never know about dementia...

Symptoms assumed to be old age or
laziness/ stubbornness
Doctor does not
diagnose
dementia
Doctor diagnoses
dementia
Family starts
adjusting
Family may consult doctor
(if feasible and if the person agrees)
Something odd happens. Family hides
person/ignores symptoms

Just after the diagnosis
• No instant change
• Diagnosis is not believed
– Families may not understand or believe
the diagnosis
– Others may not believe it
• Family expects medicines will cure
the disease
• Family has no idea how dementia will
impact them
– No advice for care or future planning
If they say she has an illness,
they should give medicines. If
Allopathy has nothing, find
something in some other
system.
I’m sure your mother will
become perfectly alright again.
She is a nice lady. You should
have hope. Be nice to her.
Forget the diagnosis. Doctors
always use big words. There is
nothing wrong with your
mother. She’s just a bit more
forgetful, so what?

Just after the diagnosis
• No instant change
• Diagnosis is not believed
– Families may not understand or believe
the diagnosis
– Others may not believe it
• Family expects medicines will cure
the disease
• Family has no idea how dementia will
impact them
– No advice for care or future planning
If they say she has an illness,
they should give medicines. If
Allopathy has nothing, find
something in some other
system.
I’m sure your mother will
become perfectly alright again.
She is a nice lady. You should
have hope. Be nice to her.
Forget the diagnosis. Doctors
always use big words. There is
nothing wrong with your
mother. She’s just a bit more
forgetful, so what?
It takes time for families to start
learning about dementia and
changing for it

Caregiving: a gradual learning
process
• Ongoing learning and
adjustment
• In spite of all that is
done, the person
declines
– (because dementia is
chronic, and
progressive)
• This goes on for years. It
requires big adjustments
– It is tiring physically and
emotionally
– Takes up a lot of family
attention and resources
Family members try to understand how
dementia affects the person. They try to see
what sort of care is needed.
They adjust their lives adjustments to take
out time and money for care. They start using
various methods to support the person
Things improve for
some time
Then person’s
dementia gets
worse. Now the
cycle has to start
again
Some care methods
do not work. They
need to be refined.


Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
DEMENTIA PREVALENCE.
SUPPORT AVAILABLE.
Dementia prevalence. Support available.

How many around us have dementia?
• Anyone can get dementia
• Older persons have a higher chance of
dementia
– Dementia prevalence doubles for every 6.6 years
increase in age
– In the 90+ age group, 44.1% have dementia
• Persons below 60 years of age can also have
dementia
– Data on this very poor (heavily underdiagnosed)
– Current estimates: this adds 2-8% to the number
of persons with dementia
60-64 70-74 80-84 90+
Age (years)
65-69 75-79 85-89
1.9% 3.0% 4.9%
8.3%
14.0%
23.0%
44.1%
Data in this section is based on published reports and national/ international resources: Dementia India Report 2010, World Alzheimer Report
2015, WHO report: Dementia, a Public Health Priority, ARDSI website and National Dementia Helpline, UN Population Reports, etc.

• India, 2015: 41 lakhs elders (persons
above 60) have dementia
– that is 4.1 million persons or 3.7% pf persons above 60
🏠🏠🏠🏠🏠🏠🏠🏠
🏠🏠🏠🏠🏠🏠🏠🏠
3.7 % of people
above 60 have
dementia
1in every 16 households with an elder has
someone with dementia
2015
• Households with anyone above 60 years old

• India, 2015: 41 lakhs elders (persons
above 60) have dementia
– that is 4.1 million persons or 3.7% pf persons above 60
🏠🏠🏠🏠🏠🏠🏠🏠
🏠🏠🏠🏠🏠🏠🏠🏠
3.7 % of people
above 60 have
dementia
1in every 16 households with an elder has
someone with dementia
2015
... because dementia is not diagnosed in most cases
IndiaIn
1 10Only out of people with
dementia get any diagnosis,
treatment or care
• Households with anyone above 60 years old
• But we don’t realize this ...

Current help from health
professionals is very limited
• Most health professionals do
not understand or recognize
dementia....
– emergency care doctors,
specialists in other areas,
physicians, dentists, etc.
... awareness regarding the disease is very
poor in the community as well as the
medical fraternity.
(from Dementia India Report 2010)


Current help from health
professionals is very limited
• Most health professionals do
not understand or recognize
dementia....
– emergency care doctors,
specialists in other areas,
physicians, dentists, etc.
• Extremely few specialists
– The Dementia India Report calls
this “very low human resource
capacity” the “most
significant barrier” in
supporting dementia
• Even families that consult
doctors may not get a diagnosis
or suitable advice
... awareness regarding the disease is very
poor in the community as well as the
medical fraternity.
(from Dementia India Report 2010)

Number of specialists per 10,00,000 population
Psychiatrists
Neurosurgeons
Psychiatric nurses
Neurologists
Psychologists
Social workers
1 2
Note that dementia is just one of the many medical
problems that these specialists support

Current care support is very, very low
• Almost all care is done at home
– No place where person can spend
the day while family members do
their jobs or other work
• Attendants very few, and
expensive and unreliable
– Most families in India earn less
than the monthly salary of a semi-
trained attendant.
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41 lakh elders
have
dementia
Less than 2000
Care centre
capacity is:
In India

Current care support is very, very low
• Almost all care is done at home
– No place where person can spend
the day while family members do
their jobs or other work
• Attendants very few, and
expensive and unreliable
– Most families in India earn less
than the monthly salary of a semi-
trained attendant
• Extremely few dementia related
services. Nothing affordable by
most Indians.
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41 lakh elders
have
dementia
Less than 2000
Care centre
capacity is:
In India
No financial help for families
supporting someone with dementia

₹

Multiple Constraints
• Language and literacy barrier
– Most information requires reading English
– Material available requires reading skills beyond
primary school level
Even when in other languages, the material is
complex. (excerpt from a Govt. website, Oct 2015)
...इनमें मस्तिष्कीय कोशिकाओं का क्षय,
मस्तिष्क से प्रेरणा का कम पारेषण िथा
मस्तिष्कीय कोशिकाओं के मेटाबोशिज्म के
अंतिम उत्पादों का स्तथति पररवितन
िाशमि है।

• Geographical barrier
– Information available only in major metros and
large cities
– Not available in smaller cities
– Not available in rural areas (70% of India)
– Some regions have very low coverage
Very few dementia-specific organizations; an
example of ARDSI chapters (taken Oct 2015)

• Geographical barrier
– Information available only in major metros and
large cities
– Not available in smaller cities
– Not available in rural areas (70% of India)
– Some regions have very low coverage
• Support not affordable. Everything costs
money
– Consulting doctors, doing tests
– Services like day care, attendants
– Basic medicines, and care and hygiene products
– Transport costs to reach cities for doctors/
organizations
– Using emergency and other medical systems
Very few dementia-specific organizations; an
example of ARDSI chapters (taken Oct 2015)

Projected growth in dementia
Dementia will increase most
rapidly in regions with higher
populations. But current
awareness and support is lower
in these regions.
Dementia India Report 2010

The impact of dementia will increase
as India “ages”
People are living longer
Older persons (above 60) will be a
larger part of the population
Life
expectancy
if born in...
36.62 years
49.4 years
67.47 years
75.87 years
1950-55
1970-75
2010-15
2045-50
From 8.9% in 2015
...
To 19.4% in 2050
2015 8.9% 2050 19.4%

The impact of dementia will increase
as India “ages”
People are living longer
Older persons (above 60) will be a
larger part of the population
Life
expectancy
if born in...
36.62 years
49.4 years
67.47 years
75.87 years
1950-55
1970-75
2010-15
2045-50
From 8.9% in 2015
...
To 19.4% in 2050
2015 8.9% 2050 19.4%
By 2050,
133.3 lakh people will have dementia (increase of 225%!)
The overall population will increase by 30%
So more and more families will be impacted by dementia
2015 2050

Families need to know the
status of dementia in India
• Remain alert about symptoms. Get a diagnosis
– Find out more about dementia
– Be alert about symptoms and consult doctors early
– Don’t give up if information/ diagnosis is not easy to get
• Have realistic estimates of available support. Plan accordingly.
– Ensure services that claim to support dementia are genuine
– Don’t assume people (or even doctors) will understand
– Appreciate why families have to create their own support system
• Create enough awareness around family to cope with dementia
• Create a group of persons who are helpful and sensitive enough to
support
• Connect with other families living with dementia


Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
CAREGIVER ACTIONS: UNDERSTAND
AND ACCEPT SITUATION
situation

Understand and accept dementia
• Understanding enables for realistic expectations
– Gives a basis for a practical approach. Motivates to
learn new ways and change habits
• Without this,
– Caregivers keep getting disappointed or angry.
– Waste energy on things that don’t work
– Failed interactions continue. Things get worse. The
person with dementia reacts to family members, and
there is a loop

Understand and accept dementia
• Understanding enables for realistic expectations
– Gives a basis for a practical approach. Motivates to
learn new ways and change habits
• Without this,
– Caregivers keep getting disappointed or angry.
– Waste energy on things that don’t work
– Failed interactions continue. Things get worse. The
person with dementia reacts to family members, and
there is a loop
• Typically, diagnosis is not enough for understanding
and accepting dementia
• It usually begins happening after some major episode
counselling, talking to other families, reading books, blogs,
seeing movies
• There are multiple factors and multiple reinforcements

Accepting is key for effective care
Different families, different care experiences
Stressful care: Persons
perturbed/ withdrawn more
often. Caregivers are
overwhelmed most of the time.
Afterwards, may feel guilt,
regret
Extremely unhappy
situation: Repeated
unpleasant episodes,
conflicts. Even later,
caregivers see it as a black
hole in their lives
Smoother care:
Persons relatively
peaceful, satisfied.
Caregivers neutral/
positive most of the
time.
🔑

Accepting is key for effective care
Different families, different care experiences
Stressful care: Persons
perturbed/ withdrawn more
often. Caregivers are
overwhelmed most of the time.
Afterwards, may feel guilt,
regret
Extremely unhappy
situation: Repeated
unpleasant episodes,
conflicts. Even later,
caregivers see it as a black
hole in their lives
Smoother care:
Persons relatively
peaceful, satisfied.
Caregivers neutral/
positive most of the
time.
All families need time to adjust. Families with happier outcomes give turning
point as:
• “I stopped getting upset once I believed he really didn’t remember”
• “We changed what we expected from Amma”
• “Once we understood her problems, we changed how we talked to her”
• “When others told us they had similar problems, we realized she was not
being stubborn. It was the effect of a disease.”
🔑

Diagnosis is not enough
• Diagnosis and initial sessions are short and
take the family by surprise:
– Doctors may not explain “dementia”
– Family members don’t remember specific diagnosis
– Because they don’t know about dementia, family
members do not know what is being said or what to
expect
• They don’t even know what the medicines will help with--
memory? agitation? vascular problems?
• Hardly any care advice is given or
remembered
– Doctors often don’t give care advice
– Caregivers only remember summary statements like “the
psychiatrist said, keep your husband happy”
– Families don’t realize their actions can affect the person’s
well-being (positively or negatively)
In the diagnosis session
What is remembered
xxxxxxxxxxxxxxxxxxxxx
xxxxxxxxxxxx
qra aa xx xx
xzy

Information from doctors compared
to other information
• After the doctor visit, families don't get any reinforcement of what they were
told
• Instead, people around them say things like
– “it’s just ageing”
– “if you show enough love, she will be alright”
– “give her more fruits”
– “have you read about <xyz> miracle cure?”
• Also, because of the stigma, families often hide the diagnosis and signs of
changed behavior. They even hide the person at home.

Information from doctors compared
to other information
• After the doctor visit, families don't get any reinforcement of what they were
told
• Instead, people around them say things like
– “it’s just ageing”
– “if you show enough love, she will be alright”
– “give her more fruits”
– “have you read about <xyz> miracle cure?”
• Also, because of the stigma, families often hide the diagnosis and signs of
changed behavior. They even hide the person at home.


 

 📣
Messages heard by the family
day and night carry more
weight and are believed more
The doctor’s
explanations are
forgotten
qra aa xx xx
xzy

What families can do
• Visit the doctor again for clarifications
– Have the questions ready
– Ask about the dementia type and possible
treatments
– Ask about how it may get worse
– Get addresses of services and organizations that
can help
• Locate reliable information to understand
dementia better
• Try to connect with other families living with
dementia
• Don’t assume that the comments and advice
of others are correct
– If they give wrong advice, it is you who will suffer
– Most of them are repeating what they heard
How can the neighbor
be so sure there is
nothing wrong with
Amma? He has not
seen the brain scans.
He is not a doctor. He
doesn’t even know the
name of Amma’s
disease or her
problems.


Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
CAREGIVER ACTIONS: LEARN,
APPLY, & REFINE CAREGIVING
SKILLS.
caregiving skills

Adjusting takes time
• Accepting dementia takes time. But better acceptance
makes it easier to adjust
– Acceptance makes it easier to apply essential care skills
– But acceptance is not smooth
– There are good days and bad. There are doubts, loops, and
reversals
• Motivation reduces when others around the family refuse
to accept the diagnosis
– Why learn something everyone considers unnecessary?
• Tendency to slip back into “diagnosis denial” because
deterioration is slow
– On some days it is just “like old times”
• “Learning care skills” does not match the “everyone lives
with elders, what’s the big deal” statements that families
keep hearing
Learning is more
likely to be
spread out. Has
ups and downs.
May never reach
optimal level.
What
professionals
expect: rapid
and smooth
learning

Information caregivers need
• Enough about dementia to
– recognize how it impacts behavior
– Know what drug and non-drug treatments can do
– Set realistic expectations
💊

• Enough about dementia progression to plan care
– How the symptoms will change/ increase
– How long the care may take
– Costs and extent of care that may be needed
💊


• Basic care skills
– How to interact and support
– How to adapt the environment to keep person engaged and safe
– How this differs from living with non-dementia elders
– How to “enrich” life of the person and the entire family

💊


• Basic care skills
– How to interact and support
– How to adapt the environment to keep person engaged and safe
– How this differs from living with non-dementia elders
– How to “enrich” life of the person and the entire family
• Tips for implementation
– Practical ideas for normal care
– Practical ideas for special challenges
– Some ideas of what not to expect from yourself as a caregiver

💊

₹

Sources of material and training
• Books, manuals, blogs, videos
• Training courses, workshops, interactions with
qualified and experienced counsellors
• Forums where caregivers share personal stories
• Be careful about sources used
– Which source is authoritative? Whom to ask
questions?
– Start with very well-established international
sources, re-validate “hopeful” claims with them
• Be careful about the personal data you share in
forums
– moderated, confidential forums are better

Apply material to the
specific care situation
Existing material and training needs to be
interpreted and applied
• Be careful: material often assumes the caregiver is the
“doer” and person with dementia is the “object” of action
– No practical advice on how to persuade an unwilling person
• Be careful: material often assumes
– A “typical caregiver”: You need to adapt it for own situation and
home care
– Abundant money, time, and resources are available: You need to
see what is practical. You have to be creative
• Material is not be easy to apply in India
– It is usually written for countries where support is better and the
way of living is different
– Not for Indian environment, not in Indian languages, does not
have Indian examples
• Material ignores some aspects of care
– e.g., end-of-life-care discussions
📓

Apply material to the
specific care situation
Existing material and training needs to be
interpreted and applied
• Be careful: material often assumes the caregiver is the
“doer” and person with dementia is the “object” of action
– No practical advice on how to persuade an unwilling person
• Be careful: material often assumes
– A “typical caregiver”: You need to adapt it for own situation and
home care
– Abundant money, time, and resources are available: You need to
see what is practical. You have to be creative
• Material is not be easy to apply in India
– It is usually written for countries where support is better and the
way of living is different
– Not for Indian environment, not in Indian languages, does not
have Indian examples
• Material ignores some aspects of care
– e.g., end-of-life-care discussions
Caregiving manuals usually
do not have tips on how to
learn faster. They do not
discuss how to cope with
the emotional cost of
dementia care.
They focus on what to do.
They rarely mention that
mistakes are common.
📓

Use support services
(if affordable)
• Very difficult for a small family to handle all the required care for many
years
• Families share the work to the extent possible. They also consider services if
affordable, reliable, and available.
• Types of services available
– Trained paid caregivers
– Day care centre, respite care centre, full-time care centre
– Home medical services—doctor visits, blood tests, IV and injections at home
– Services to help elder get company/ occupational therapy/ physical therapy
– Caregiver resources, training, support groups
• Most families create their support systems using their money, their family
members and close friends, and their creativity
– Educate friends, relatives who are willing to listen
– Modify and use support systems available for other illnesses/ ageing elders
• like training an ayah to care for someone with dementia

What caregivers can do
• Learn about dementia and care. Remember...
– Mistakes will happen. Everyone makes mistakes
– You will forget to use what you learned
– Be kind to yourself when you make mistakes


• Build enough reminders to remember how
dementia affects the person and how you can
help
– Stay in touch with dementia realities through
books, caregiver stories, forums
Example of pictures to
remind caregivers about
dementia’s impact


• Build enough reminders to remember how
dementia affects the person and how you can
help
– Stay in touch with dementia realities through
books, caregiver stories, forums
• Regularly review how well you have changed your
habits
• Use forums and counsellors for ideas and support
• Avoid people who blame and criticize
Example of pictures to
remind caregivers about
dementia’s impact


Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
CAREGIVER ACTIONS: HANDLE
SPECIAL PROBLEMS
Handle special
problems

The special behavior challenges
• Some behaviors are more difficult to handle
– Usually socially embarrassing, physically difficult to clean up
after, risky for person or others
– Examples: smearing feaces, hitting others, shouting at night,
making sexual passes, removing clothes, hitting people, stealing
car keys and driving off, hiding things, repeatedly taking/
demanding medication and food
• No easy answers, no easy suggestions
• Socially unacceptable to mention many of these
– Stigma for family or person or both
– May be asked to vacate home by landlord
– Family may be ostracized

The special behavior challenges
• Often receive simplistic advice that is not specific for difficult
behavior
– “show more love”
– “spend more time”
• Even if the family has ideas on what can improve the situation,
they may not be in a position to make the required changes.
– Problems of space, money, location, neighborhood, etc.
• On approaching doctors
– Medication may reduce one problem but add other problems
(confusion, drowsiness)
– Some behavior get worse with medication

• Talk to doctors, counsellors, and also see how other families handle it
– Support groups (online or face-to-face)
– Books, blogs, case studies
– Sometimes it takes time to reach a suggestion that works
– You may never find it
• Try standard problem-solving techniques and various tips. If the
problem persists, see how to reduce its impact
– Reduce risk to person and surroundings
– Reduce physical and emotional impact on others
– Reduce social criticism and how you feel about it
– Make other parts of life smoother and less frustrating
• The special challenge will seem smaller if the rest of the day is better
• Stay connected with support groups and non-judgmental friends

📓
Not all problems can be solved. Try to find ways to reduce or
solve problems, but don’t blame yourself if you can’t.
⌕

Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
CAREGIVER ACTIONS: BE ALERT
ON DECLINE
Be alert on
decline

Stay alert for signs of decline
• There are many possible reasons for decline
– Does the existing care approach need
refinement?
– Has the environment changed?
– Could it be a medical problem?
– Has the dementia disease become worse?
• If the cause is not dementia, resolve it
• If dementia is getting worse
– Don’t feel let down or overwhelmed if the
decline is because of dementia. This is the
nature of dementia
– “Understand and accept” this decline. Find care
approaches suited for this new situation

Stay alert for signs of decline
• There are many possible reasons for decline
– Does the existing care approach need
refinement?
– Has the environment changed?
– Could it be a medical problem?
– Has the dementia disease become worse?
• If the cause is not dementia, resolve it
• If dementia is getting worse
– Don’t feel let down or overwhelmed if the
decline is because of dementia. This is the
nature of dementia
– “Understand and accept” this decline. Find care
approaches suited for this new situation
I thought Papa’s
dementia had become
worse, but fortunately
we realized that his
hearing aid was not
working. He improved
once we fixed that.
Things were going on
well. I’m feeling so sad he
has deteriorated. We did
all we could and still...
Yes, it is so difficult to
see this. But dementia is
progressive after all...

Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
CAREGIVER ACTIONS: HANDLE
STRESS. DO SELF-CARE
Handle stress.
Do self-care.

Dementia care affects caregivers
emotionally
• The person’s mood affects caregiver mood
– This is more when the caregiver is tired and also facing other
problems
• Isolation: Caregivers don’t get other company
– Too much work, can’t leave home
– Others may be critical
– Some old friends avoid the caregiver because caregiver is
“negative” or is not “interesting.”
• Difficult to watch the person declining and dying
– Dementia is progressive. Things get worse in spite of all the care
– This was a person the caregiver knew. Seeing the decline can be
very difficult. But there is no “respite” from watching this
– Also hurts to lose shared memories
– Worse for caregiver spouses because planned retirement plans
won’t work out now
– Increasing dependence can be really difficult to see

Dementia care can create resentment
and conflict in family
• Unresolved past issues with person who has dementia
– Not everyone with dementia was loving and nurturing when
younger.
– May even have been an alcoholic/ abuser, wife-beater, or may
have harassed a daughter-in-law for dowry/ caste.
– Caregivers may experience resentment, disbelief, and fear. They
cannot confide these problems and feelings.
When younger
Then the person
gets dementia

Dementia care can create resentment
and conflict in family
• Unresolved past issues with person who has dementia
– Not everyone with dementia was loving and nurturing when
younger.
– May even have been an alcoholic/ abuser, wife-beater, or may
have harassed a daughter-in-law for dowry/ caste.
– Caregivers may experience resentment, disbelief, and fear. They
cannot confide these problems and feelings.
• Future plans are affected because of the dementia
– Major adjustments may affect many other family plans and eat up
savings or drive family to poverty
• Relationship issues can arise
– One person taking up too much attention
– Disagreement over care decisions and sharing of cost and
responsibility
– Property disputes
No money or time for
vacations planned
earlier
🍸
When younger
Then the person
gets dementia

Caregiver may not be suited for all
aspects of role
• Physical handling of care work
– Stamina for prolonged work
– Some work may repulse (handling adult diapers, soiled clothes, etc.)
– Own health problems, back problems
• Learning, changing, managing are not easy
– Many things need to be understood and changed
– Some of these require comfort with medical concepts, like home nursing, of deciding
what is a medical emergency
– Many areas in life have to be planned for and managed. Constant creativity is needed
• Emotional handling of care work
– Watching the decline
– Sense of isolation
– Loss of hope. Feeling of bleak future
– Ability to take tough decisions, or medical decisions
– Ability to handle how this care is affecting other areas of life
– End of life can be particularly difficult to handle

Fatigue is natural and common
• Care is 24 x 7 x 365, and not equally distributed between
family members
– Primary caregivers become more involved, and others may start
getting distant
• Caregiving lasts for years
– But often caregivers burn themselves out by doing too much work
in the initial stages (when it is not needed). Then they are
exhausted by the later years
– Social pressure expects them to be perfect for years

Fatigue is natural and common
• Care is 24 x 7 x 365, and not equally distributed between
family members
– Primary caregivers become more involved, and others may start
getting distant
• Caregiving lasts for years
– But often caregivers burn themselves out by doing too much work
in the initial stages (when it is not needed). Then they are
exhausted by the later years
– Social pressure expects them to be perfect for years
• In some families, there is only one caregiver
– Alone in taking heart-breaking decisions
– Emotions closely linked to person’s situation and mood
– Utter isolation, fatigue, burnout
– Cannot take a break
– Terrified of what will happen if they fall ill/ collapse
– Extreme loss/ extreme readjustment problems when the role ends

“Care for the caregiver” becomes
another pressure for caregivers
Do not get stressed.
Take a break.
Don’t do everything yourself.
Use an attendant.
Who will look after
your mother if you fall
ill? You must remain
healthy. Daily exercise,
good food, enough
sleep...
Take out time every day
for something you like

“Care for the caregiver” becomes
another pressure for caregivers
Do not get stressed.
Take a break.
I know I am stressed and need a break!
Will he look after my father to give me
a break?
I can’t afford an attendant.
Will my friends pay?
Don’t do everything yourself.
Use an attendant.
Which work can I cut down to
make time for myself? And how
can I sleep at night? Who will
take Amma to the bathroom 3-4
times every night?
Who will look after
your mother if you fall
ill? You must remain
healthy. Daily exercise,
good food, enough
sleep...
Take out time every day
for something you like
I feel bad that I can’t do all I must do. Now
people tell me I am not doing “self-care.” I
don’t need to feel even more bad! I’m not
going to meet these counselors again.

• Plan for self-care just like you plan for dementia care. Do it before the
person needs 24x7 care. Examples of what you can plan:
– Learn things that may help later, like yoga or meditation
– Find services you can use when you are tired (dabba services you like)
– Arrange your home so that you can fit in small, practical breaks, like listening to
music, painting, coloring, music, walks, exercise
– Buy things you may need later, when you will be too busy to shop
• Stay connected with others. Keep them informed and involved
– This is an investment. You may need to educate them and listen to criticism
– But later, these persons may be helpful when you are stressed
• Identify friends who can help you de-stress
– Some people use different friends for different moods
– Old friends may fall away. Make friends in support groups
• Move away from “toxic” persons
• Use helplines and support groups before you are overwhelmed


Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
EXPECTATIONS AROUND THE
FAMILY
Expectations around the family

Most discussions don’t include social
expectations
• Reasons given by professionals
– We can’t change the social context
– We can’t help
– We don’t know enough about such things
– The family should not bother about society. They
should do their “duty”
• Caregivers do not bring up such issues
– Shame, privacy, fear of criticism
– They think they are alone in such concerns
• Advice often ignores such issues
– So the advice is impractical and not used
– Volunteers sound insensitive
– Such unsuitable advice and commentary increases
caregiver stress or isolation
No one talks of
these things.
Maybe I am the
only person
unable to handle
it. I should keep
quiet, or what
will they think!

Reality: Pathetic dementia awareness
in society
• Misinformation, myths, stigma
– Dementia symptoms are just normal ageing
– Indians do not get dementia
– He/ she is acting odd because he/ she is mad, stubborn, bad character, lazy
– He/ she has problems because the family is cruel, greedy, and negligent
Crazy 
Stubborn
“Not there”

Cruel
Greedy
Negligent
• Diagnosis denied/ contested in society
• Visitors make insensitive comments to the person with dementia
• Because of “mental illness” stigma, family may hide person instead of looking
for diagnosis and information
• Exploitation: “miracle cures”, False claims by service providers and centres
about being suitable for dementia

=

Reality: Caregiving role not
recognized in society
• Socially assumed that this is just like living
with a normal ageing adult
– Even if dementia mentioned, it is assumed
to be just “memory loss”
• So caregivers cannot express any fatigue
or frustration
– They may be seen as lazy or complaining
– They may get lectured instead of being
helped
• Even if someone wants to help, they don’t
think they need to learn anything to help
properly
So what? All
elders have
problems. We all
live with our
elders. Why do
you keep
complaining?
Don’t you love
them?

• Create a small circle of aware people
– Use authoritative literature, experts who will be
believed, books, movies, videos, pictures
– Have “counter explanations” for common
criticisms. Be patient
• Think of this effort as an investment
– Do it in early stages, when the work is less
• Use this circle of friends to
– Get help, especially for crisis (like wandering)
– Tell other acquaintances that your problems are
genuine, and thus reduce criticism from others
Use pictures to convey the
“illness” aspect


Use pictures to convey the
“illness” aspect

Some people will never believe you; don’t waste
your time on them

Medical professionals, facilities do not
support dementia well
• Very poor understanding and support from non-specialists
– They don’t know how to help persons with dementia (diagnosed or
undiagnosed)
– Most elderly persons have many medical conditions. If person also has
dementia, the person cannot communicate and will get frightened,
and the family is not believed
• No medical support for home care for someone with dementia
– Persons with dementia don’t agree to visit doctors. Even if they do, it
is difficult to take them to clinics
– This is an even bigger problem in late stage care and for end-of-life
decisions
• Families face problems coordinating across various specialists
• Medical facilities cannot handle confused persons
– Persons with dementia may get worse in clinics and hospitals

Doctors often prescribe without
explaining to family
• Over-prescription of anti-psychotics is common
– Even specialists tend to over-prescribe anti-psychotics
• Doctors do not discuss the various medical options,
the pros and cons of each drug and the possible side-
effects
• Doctors do not tell families about non-drug ways to
help person
– They confine their advice to medicines
– Families do not know they can consider non-drug methods
• No discussions on end-of-life options or on pros and
cons of aggressive treatments like strong antibiotics,
catheters, and tube feeding
💊

Volunteers can be critical and
insensitive
Caregivers don’t ask for help
so that they stay in control.
They chose to be caregivers.
Why do they complain about
being are tired? If they felt
love, they would never be
tired.
They should spend a few hours every day
with their elders. But all they want to do is
enjoy and have fun.


Volunteers can be critical and
insensitive
Caregivers don’t ask for help
so that they stay in control.
They chose to be caregivers.
Why do they complain about
being are tired? If they felt
love, they would never be
tired.
Children nowadays don’t
care for their parents. They
neglect them. That is why
they don’t bring them for
repeated checkups.
They should spend a few hours every day
with their elders. But all they want to do is
enjoy and have fun.
That family has an apartment and a car. Why
can’t they spend money on their parents?
Children are selfish and forget how much
their parents sacrificed for them.
They should move in with their
parents. So what if they have to
give up their jobs? Money isn’t
everything.


For medical visits
– Keep the medical records handy. Mention dementia prominently
– Explain about the dementia to doctors and nurses
• Refer them to the specialist or senior doctor if they don’t believe
– Stay informed about medical options in dementia care
– Actively discuss with doctors (senior doctors are often more open to
discussions)
• Ask doctors about side effects when they prescribe medicines
• If things don’t improve, ask for a review of all medicines. Or take a second opinion.
Discuss with others to find doctors who understand dementia
– Plan in advance how you will handle an emergency trip
For ongoing health of person
– Try to find a doctor who makes home visits.
– Do regular tests and checkups for all relevant medical areas (not just
dementia)
Avoid or ignore volunteers who don’t understand
– Remember, they are just ignorant and impractical


💊

Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions
THE FAMILY SITUATION AND
CONSTRAINTS

The family situation affects care
• Economic status, income, saving,
investments and property, existing loans,
financial commitments
• Age, health, and status of various other
family members
• Size of family, and whether living together,
near each other, or spread out
• Conflicts and issues within the family
• Education level of caregivers
• Geographic location, access to nearby
services etc.


Assumptions that volunteers make
about family situations
• The family is assumed to be upper middle-class and above
– Typical advice: “spend more time”, “relocate”, “Use day care”,
“make home adaptations”, “buy tools”, etc.


Assumptions that volunteers make
about family situations
• The family is assumed to be upper middle-class and above
– Typical advice: “spend more time”, “relocate”, “Use day care”,
“make home adaptations”, “buy tools”, etc.
• Underlying assumptions about primary caregivers and family
– Can give up part of regular income or all the income. There are
enough savings for years of dementia care.
– Can handle the physical and emotional work needed for care
– Time and energy can be used fully for dementia care.
– Caregivers can understand available material
• no language or literacy or personality constraints
– They can access experts, counsellors, and doctors
• no geographic constraints, no problem paying for transport, no problem
transporting person with dementia
– They are not affected by stigma or social disapproval
– Living spaces are large enough for live-in attendants and for
activities that need space and privacy



Care requires money
• Cost components
– Medicines, doctors, nurses, tests
– Reaching medical facilities or paying for care at
home for various 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 for actual care work
• If external help used, attendants/ ayahs, day care +
transport
• If family members do the regular care work, then
income is lost
• During intense care periods and emergencies, income is
lost
₹

Care requires money
• Cost components
– Medicines, doctors, nurses, tests
– Reaching medical facilities or paying for care at
home for various 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 for actual care work
• If external help used, attendants/ ayahs, day care +
transport
• If family members do the regular care work, then
income is lost
• During intense care periods and emergencies, income is
lost
₹
Income
Costs
This goes on
for many years

Spending and saving patterns
in India
All-India 2004-2005 data for household spending and saving. Patterns are likely to be similar even now.
• Income, expenses and savings
– Routine expenses: Around 63% of income
• for food, housing, durables, clothing. Around 4.7% of this is spent on health
– Non-routine expenses. Around 13%, of income
• for ceremonies, education, travel, emergencies, etc. Around 27% for medical emergencies
– Savings: Usually 25% of income,
• for emergencies, education, old age , house, business, durables, gifts, etc.
• only around 2% households buy insurance policies
– Nearly a fourth had outstanding loans
(Data based on:How India earns, spends and saves: unmasking the real India / Rajesh Shukla, SAGE Publications (NCAER report of 2010)
₹
₹

in India
• If we combine what a family uses for health, medical emergencies and all its
savings, that is around 30% of the income.
– How much of it can be used for one person for years? What about other medical expenses
and emergencies?
₹
₹

in India
• If we combine what a family uses for health, medical emergencies and all its
savings, that is around 30% of the income.
– How much of it can be used for one person for years? What about other medical expenses
and emergencies?
• “Economic shock” (death of chief earner, sickness, crop loss, business loss)
– For sickness, methods used to find money to cope:
• savings (57%), loan from friends, relatives (23%), selling/ mortgaging (6%) ...
₹
₹

Savings and lost income
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, the shares for ‘self-employed in
non-agriculture’ and salary earning categories being seven per cent and
nine per cent, respectively.
...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....
.... yet 54 per cent households claim that they are financially secure.
Urban Indians appear to be even more optimistic than their rural
counterparts. ...
Indians do not take a long term view of their financial security...
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)



So, what sort of expenses does
dementia care involve?
• Dementia India Report 2010 suggests urban costs as ranging from ₹ 7000 per month to ₹
14000 per month
• If a family uses up 30% of its income on this, they still require a minimum monthly income of ₹
23,000 to ₹ 46,000
– These expenses are beyond the reach of most families in India

14000 per month
23,000 to ₹ 46,000
– Only the top 2.24% can handle the ₹ 7000 expense. Only the top 0.38% can handle ₹ 14000
Using: http://timesofindia.indiatimes.com/calculator.cms

14000 per month
23,000 to ₹ 46,000
– Only the top 2.24% can handle the ₹ 7000 expense. Only the top 0.38% can handle ₹ 14000
Using: http://timesofindia.indiatimes.com/calculator.cms
Or just consider a few of the many
expenses
• Diapers: Adult diapers, at 2 a day,
costing ₹ 35 to 50, for a month,
that comes to ₹ 2100 per month
just for diapers.
• One trip in an ambulance costs ₹
500 to ₹ 1000 (more for far flung
areas)
And see how difficult most families
find it to handle care expenses

Impact of increased expenses
Tough decisions have to be
made.
• They impact current and
future prospects of family
members, and social
interactions.
• Can lead to conflict, abuse,
neglect.

Impact of increased expenses
Poor families cannot handle
more expenses. Even middle-
class families get deeper into
debt and poverty
• Apparent wealth like a car is
not the same as cash needed
to pay for an ambulance or
diapers or attendant
Tough decisions have to be
made.
• They impact current and
future prospects of family
members, and social
interactions.
• Can lead to conflict, abuse,
neglect.
But as millions rise out of poverty, millions fall
in — partly because “free markets” are not free
enough, and partly because of the lack of
healthcare.
( “Poverty’s Two-Way Street”, Deepa Narayan,
http://www.nytimes.com/2009/05/27/opinion/27iht-ednarayan.html)
...poverty is a condition, not a characteristic
http://www.eldis.org/go/home&id=42500&type=Document



What can caregivers do?
• Accept that care will go on for years. It will be costly. Finances need to
be planned
• Look for ways to continue earning even when actively caregiving
• Discuss with family and relatives (close and distant) how you can share
work and expenses
– Keep everyone informed of problems and status
– Be ready to give details like “expense statements”. Remind relatives if they forget
• Examine expenses to save more and spend less
– Can current spending or commitments be reduced? Discuss and decide along
with family
– Habits and commitments take time to change. Start this as soon as you can
• For investments and assets
– Re-organize for the liquidity you want, invest future savings wisely
• Plan for possible future relocation
• Be careful before taking on new commitments like loans, expensive
education


Balancing with other roles
• Often not talked about when training /
counselling on dementia
– While attending trainings, conferences, a lot
of advice seems do-able
– When caregivers return home, they
remember all the other things they need to
do
– They don’t know how to find the balance
During trainings
Back at home

Balancing with other roles
• Often not talked about when training /
counselling on dementia
– While attending trainings, conferences, a lot
of advice seems do-able
– When caregivers return home, they
remember all the other things they need to
do
– They don’t know how to find the balance
• Dementia home care does not replace
other work
– It gets added to other work
– Other tasks cannot be ignored. Adjustments
and down-sizing take time. They are not
always possible
During trainings
Back at home

What can be done
• Caregivers
– when attending trainings or discussing care, explain your time and energy
constraints
– ask for practical and time-saving ways to do things
– talk to other caregivers to share tips
– look at various time management and financial planning advice
– don’t assume you have to be perfect
– don’t feel guilty if others don’t understand your problems
• Volunteers/ professionals
– Help families living with dementia with practical ways to cope
• Think of what they can do differently within the time and money they have
– Avoid anything that is critical or blaming



What can be done
• Caregivers
– when attending trainings or discussing care, explain your time and energy
constraints
– ask for practical and time-saving ways to do things
– talk to other caregivers to share tips
– look at various time management and financial planning advice
– don’t assume you have to be perfect
– don’t feel guilty if others don’t understand your problems
• Volunteers/ professionals
– Help families living with dementia with practical ways to cope
• Think of what they can do differently within the time and money they have
– Avoid anything that is critical or blaming
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



SUMMING UP...
Handle stress.
Do self-care.
situation
caregiving skills
Handle special
problems
Be alert on
decline
Caregiver actions

Support is very poor, so caregivers
have to be informed and active
• Family caregivers are essential for dementia care in
India
• Awareness and support is extremely low.
Caregivers face several challenges and difficulties
– They need to get information, plan care, keep refining
what they do, and support the person throughout the
dementia journey
• They have to maintain multiple roles and responsibilities
– They have to explain the situation to others and get
support, and plan for their own self-care
• This is needed because dementia is stigmatized and
caregiving is not supported in our society
– They should have realistic expectations of what they
can achieve


Volunteers need to “get real” to give
useful help
• Some things that professionals and
volunteers can do
– Improve dementia awareness and sensitivity
within the overall medical and volunteer
community
– Understand what dementia home care involves
– Be sensitive and realistic while interacting with
caregivers.
– Find practical actions to suggest to caregivers
– Create affordable (or free/ subsidized) services
and support systems for families living with
dementia
– Spread dementia awareness within the public


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

Dementia Home Care in India: Overview and Challenges ARDSICON 2015

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