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Understanding Dementia Diagnosis from a
Caregiver Perspective
Exploring caregiver experiences around diagnosis for insights on how to improve it
International Symposium on Dementia and 22nd Annual Conference of ARDSI (Alzheimer’s
and Related Disorders Society of India)
14th to 16th September 2018, Indian Institute of Science, Bangalore (India)
Part 1 by Swapna Kishore
©2018 Swapna Kishore 1
This presentation…
• Shares Indian caregiver stories around dementia diagnosis[1],
including:
• Looking for help
• Selecting a doctor
• Diagnosis: during and just after
• Understanding care aspects
• Identifies possible actions to improve the diagnosis experience
2©2018 Swapna Kishore
[1]Data about diagnosis experiences has been obtained from caregivers of persons diagnosed with dementia
and volunteers/ professionals supporting them. All data is anonymised
Context: Diagnosis as a gateway for treatment
and support
• A diagnosis is necessary for appropriate
treatment and care.
• But is a diagnosis sufficient for this? Is it immediately
effective?
• Is it early enough to derive the best possible benefits
of available interventions?
• Receiving the diagnosis of a chronic, progressive
disease is a major event for a family.
• How well are families able to understand and process
the diagnosis to benefit from it?
3©2018 Swapna Kishore
In spite of the fact
that we had
suspected it earlier,
the actual diagnosis
and the medication
makes you realize this
is it, it is a long haul.
What caregivers say…
©2018 Swapna Kishore 4
In India, an estimated 90% of the cases do not receive dementia diagnosis and
treatment right till the end.
An estimated 10% get diagnosis and interventions at some point, and receive some
benefit
First attempt to get medical
help (howsoever feeble)
Symptoms get worrying
enough to seek a diagnosis.
This is usually mid-stage
dementia
Unclear diagnosis,
ignorance of
dementia, denial,
seeking clarity,
exploring options
Family members accept the
diagnosis and try to give
suitable care
Moderate acceptance of
dementia and its care
implications
Exploring,
wavering
Looking for help
5©2018 Swapna Kishore
Examples of problems that led to seeking help
• Families rarely seek help for mild memory
problems or confusion.
• Help mostly sought when care becomes
difficult/ socially awkward. Examples:
• Personal grooming
• Symptoms prominent in social settings
• Difficult behaviour that can’t be managed
• Crisis created by something like wandering
• Often a cluster of symptoms are seen before
help sought
©2018 Swapna Kishore 6
Problems that make families seek help
differ across countries. For example, the
top four difficulties that prompted
seeking help in Europe are:
• Memory/ confusion: 83%,
• Difficulties following conversations:
52.1%
• Difficulty finding belongings: 50.4%
• Difficulty travelling outside: 42.2%
(Table 3, European Carers’ Report 2018 (Alzheimer Europe)
Symptoms may not be noticed or may be
interpreted as ageing
• Symptoms may not be visible to family members.
• For example, adult children may not realize there are problems as they live
separately
• It is common for elder persons with symptoms to hide their problems
• It is also common for elderly spouses to hide problems from the children.
Complaints by neighbours are often assumed to be false or exaggerated
• Symptoms may be noticed but families may not feel they are because of a
medical problem.
• “we thought it was ageing”
• Commonly used terms in Indian languages - like Saṭhiyānā (‘gone sixtyish’) in Hindi,
chinnan (‘childishness’) in Malayalam and nerva frakese (‘tired brain’) in Konkani –
suggest that memory loss, stubbornness , increased aggression, paranoia and
suspicion are all part of ageing
• Symptoms may also be attributed to retirement, bereavement, relocating, stress
©2018 Swapna Kishore 7
The role of stigma
• Stigma and Fear (of a dementia diagnosis) are often
mentioned as reasons for delay in diagnosis-seeking.
• In many countries, getting a diagnosis brings aspects
like
• Positive reactions: relief at getting an explanation for
problems
• Negative reactions: despair, fear of loss of personhood,
reactions of others (“not quite there”, lack of respect)
• Which aspects of dementia symptoms and diagnosis
carry stigma in India?
©2018 Swapna Kishore 8
[1]: World Alzheimer Report 2011, The
benefits of early diagnosis and intervention
US/ UK reports have
said that fear of a
dementia diagnosis is
greater than the fear
of developing cancer,
heart disease,
diabetes or stroke[1]
Are families in India scared of a dementia
diagnosis?
Most families have not heard the word “dementia” or “Alzheimer’s”
before the diagnosis.
©2018 Swapna Kishore 9
I was utterly clueless. I did not know what to expect. I
had not heard of dementia before. I came back and
surfed for it.[2]
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
[2] as narrated by a caregiver son from a metro while talking of his reaction when he got a dementia diagnosis from a specialist
[3] page 50, Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath, Orient Blackswan Pvt Ltd, 2014)
We took her to a neurologist at
the hospital. He told me that
she had dementia, Alzheimer’s. I
was hearing these words for the
first time. I didn’t even know
what dementia or Alzheimer’s
was.[3]
Stigma re “mental health”: an example
©2018 Swapna Kishore 10
Case: A middle-class family assumed the mother’s forgetting was old age till
the day she lost her way home on a very familiar road. Her alarmed sons
took her to a reputed hospital over 500 km away, where doctors did the
required tests and gave the diagnosis. According to one son,
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.
The family
perceived
stigma only
after they
equated the
diagnosis with
a “mental”
problem.
Stigma in India
Some dementia symptoms are taken as natural even if inconvenient,
others invoke dread and stigma and hiding.
A useful way of understanding stigma as experienced in India is
described by Bianca Brijnath in her book. A quote (emphasis added):
©2018 Swapna Kishore 11
Dementia sits in the juncture between ageing and mental illness and its symptoms may
lend themselves to either category. …..
The stigma experienced by families depended on how others perceived them and
where they positioned themselves on a scale between ageing and madness.
(page 138, Chapter “Stigma and Loneliness in Care”, Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath , Orient Blackswan Pvt Ltd, 2014)

Selecting a doctor
12©2018 Swapna Kishore
Selecting a doctor
• Multiple factors affect this: accessibility, affordability, type of
symptoms, what the person agrees to, what the family consensus is.
©2018 Swapna Kishore 13
Rarely warrant a doctor trip of their own.
Symptoms may be mentioned to doctor being
consulted for other health problems like diabetes
and BP. Or may be mentioned to a known doctor
(relative, family friend, neighbour), for quick advice
or reassurance.
Families actively look for medicines
that can make things better.
May visit their regular doctor/
neighbourhood GP, reputed
hospital, specialist they consider
relevant.
Mild symptoms
Serious symptoms that are
overwhelming the family
Reputed public hospitals: awe, respect, or
dread of crowds, lack of attention
• Attraction: Govt. hospitals are considered for
serious problems because of their experienced
doctors. Also, more economically accessible.
• Deterrent: perception of crowds and long wait
lists for appointments. Impression is based on
past experiences and conveyed by peers.
• One common comment: “We can’t make my father
go through that, please suggest a private doctor.”
• Families are unaware if some hospitals have
improved their systems
©2018 Swapna Kishore 14
My father was very happy when we
took him to [hospital name]. He
kept saying, see, this is how much
my children care for me.”
See everybody knows about
[hospital name]. So when
something like this happens, serious
problems, it is like a mothership, we
go there because we don’t know
what else to do. We don’t have
knowledge on such problems.
What caregivers say…
Choice of doctor may delay obtaining
diagnosis
One daughter reported that initial symptoms were mild, but the family as worried
because of the father’s repetitive complaints about dry eyes and “something in my
stomach”. 20,000 times a day he would say my eyes are dry, my eyes are dry.
Several trips were made to the eye doctor. The prescribed drops made no
difference in his complaints.
The father’s endocrinologist (for thyroid) was also told about complaints. An MRI
was done, and it showed age-related changes. Endocrinologist said nothing is
wrong.
It took three years before the family realized the problem may be something else.
These repetitive complaints stopped after dementia medication was started
(from case study: Maya)
©2018 Swapna Kishore 15
Diagnosis: During and just after
16©2018 Swapna Kishore
©2018 Swapna Kishore 17
Family lets matters rest unless
severe problems
During and after the consultation
Doctor is dismissive about
symptoms.
Doctor assures family there is
nothing wrong.
Doctor does some investigations
and then says nothing is wrong
No diagnosis given
©2018 Swapna Kishore 18
“age-related”,
“memory
problems”
Family lets matters rest unless
severe problems
Medicine tried
or ignored,
assumed not
important
During and after the consultation
Doctor is dismissive about
symptoms.
Doctor assures family there is
nothing wrong.
Doctor does some investigations
and then says nothing is wrong
No diagnosis given
Doctor gives a diagnosis or refers family to a specialist who gives a
diagnosis
©2018 Swapna Kishore 19
Doctor gives a diagnosis or refers family to a specialist who gives a
diagnosis
“age-related”,
“memory
problems”
Dementia (or type of dementia) clearly mentioned.
Range of experiences regarding explanations of
seriousness or progression, medicine usefulness,
whether medicine given, any mention of care
Family lets matters rest unless
severe problems
Medicine tried
or ignored,
assumed not
important
During and after the consultation
Doctor is dismissive about
symptoms.
Doctor assures family there is
nothing wrong.
Doctor does some investigations
and then says nothing is wrong
No diagnosis given
Family may pursue treatment or may drop out for
multiple reasons such as belief that medicines
cannot help, lack of family consensus,
hopelessness, denial, search for miracles, etc.
©2018 Swapna Kishore 20
Doctor gives a diagnosis or refers family to a specialist who gives a
diagnosis
“age-related”,
“memory
problems”
Dementia (or type of dementia) clearly mentioned.
Range of experiences regarding explanations of
seriousness or progression, medicine usefulness,
whether medicine given, any mention of care
Family lets matters rest unless
severe problems
Medicine tried
or ignored,
assumed not
important
During and after the consultation
Doctor is dismissive about
symptoms.
Doctor assures family there is
nothing wrong.
Doctor does some investigations
and then says nothing is wrong
No diagnosis given
Family may pursue treatment or may drop out for
multiple reasons such as belief that medicines
cannot help, lack of family consensus,
hopelessness, denial, search for miracles, etc.
Even if the family had dropped treatment, a crisis makes the family seek medical help again.
Other factors also affect the family’s response, e. g., reactions of others, other life challenges, practical issues
Family may miss salient points re history
• Many families focus on what is bothering them. They may not mention
milder things they consider part of ageing like the person talking to herself
• Families may feel intimidated by the hospital setting, seniority of the
doctor, crowds
• Problems like disinhibition are not mentioned
©2018 Swapna Kishore 21
A son told me his father’s symptoms had come around four weeks ago, “almost
overnight” The doctor diagnosed dementia. The son couldn’t remember if they had
mentioned the rapid onset aspect to the doctor; they had been too worried about the
symptoms.
Family response depends on perceived
seriousness: no diagnosis means no action
• If the family members gets a diagnosis like
“memory problems” or “age-related”, they
have no clear name to read about or tell
other family members.
• Family consensus to continue treatment is
less likely.
• “Why go to the doctor again, this is just age”
©2018 Swapna Kishore 22
Doctors may assume they will
convey the diagnosis on the
next visit.
But the family may not visit
again if they think the problem
is mild.
For laypersons: “Age-related” = “normal ageing” = something we just have to cope with
Family response changes after the situation is
seen as serious
©2018 Swapna Kishore 23
Vineet and his mother noticed mild problems of memory loss, repeating himself, cognitive
inability after father retired. A neurologist diagnosed premature senility after tests. Vineet
explained: “Senility is what happens when someone is 75-80, my father got it earlier.”
The prescribed medicine did not help but the family did not pursue because they had the
impression that the medicine was meant only for short-term. They thought the problem
was his retirement and some bereavement, a situational problem, not a neurological one.
When, a year later, the father showed paranoia, the family realized it was serious. They
went to a reputed hospital, made 4 trips, each with long waits and got a “dementia”
diagnosis.
Family consensus matters, especially if
symptoms not a crisis
Diagnosis gets delayed if some important family members are against it
©2018 Swapna Kishore 24
…so honestly like a thief I had to
wait for my brother to go out of the
station and I took the appointment.
But then the doctor wanted lots of
tests done, and I couldn’t proceed
until my brother would agree.
“That is how far my father would go”…
Tara, on how her father relented about showing
her mother to a GP two years after symptoms.
“I took my mother to a neurologist. My father
was in no position to fight.” Tara on how, she was
able to pursue her mother’s diagnosis after her
father had a stroke (Case study detailed later)
What caregivers say…
Denial is a problem
©2018 Swapna Kishore 25
In an interview, a daughter talked about how , for seven years
after a diagnosis of “multi infarct lesions” and dementia, the
family delayed information-seeking. Speculating on reasons, she
mentioned busy lives, stress, viewing the mother’s behaviour as
a continuation of old characteristics, but finally admitted …
We are all highly educated in our family, intelligent, articulate
and have very successful careers. There are enough books on the
topics and information is so easily available on the internet. And
yet, we didn’t bother to educate ourselves on our mother’s
illness.
(From https://dementiacarenotes.in/nadira-interview/)
You know how it is, sometimes
they (other family members)
say, no let him be, we’ll see how
it goes ….
…. and one month became two
months and then it is six
months and they are saying,
what is there, this is old age,
memory problems happen in
old age, we just have to cope…
What caregivers say…
We need to accept that there will be denial
Denial can happen even if the diagnosis is clear.
• May be part ignorance, part dread…..
• Without guidance/ counselling, denial may be
prolonged
• People around the family may also encourage
diagnosis denial
• “this sort of thing happens with elders, you just have
to handle it”
©2018 Swapna Kishore 26
I think our family
worked in reactive
mode, consulting a
doctor when a problem
was observed.
What caregivers say…
I think the family just
hoped it was a blip that
would go away
Major problem: impression that “there is no
treatment”
• “There are no medicines”:
so why go to a doctor and
get a diagnosis?
• This impression comes from
articles and news coverage,
doctors, etc.
• Even articles on new research
remind us that so far there is
no medicine.
©2018 Swapna Kishore 27
The minute we read something like “we cannot treat
it” we think “what is the point, why should we go to
the doctor?” And I have read that you can only control
the symptoms, you cannot treat them. That he
(father) could benefit from something that controls
or treats him symptomatically never struck us.
What caregivers say…
A woman said they had not visited a doctor for a
diagnosis because ‘it is obvious he has Alzheimer’s’
based on some news article. They had read
medicines cannot help, so didn’t see the need of a
diagnosis.
Information on medicines can be misleading
and discouraging
The GP started treating for Tara’s mother depression, not dementia. When asked
why, the GP explained: depression and Alzheimer’s have same early symptoms.
Treating for depression okay but medicine for Alzheimer’s is a one-way route; once
medication started it cannot be stopped.
(One year later, with another doctor) The geriatrician who diagnosed Tara’s
mother’s Alzheimer’s did not give medicine, saying it was “waste of money” for a
progressive disease.
(Note: Tara persisted and found another doctor. This later neurologist explained
more and prescribed medicines, and Tara’s mother showed a lot of improvement
with them)
(From Tara’s case study)
©2018 Swapna Kishore 28
What next? Hope is important
• Families want relief from overwhelming
problems
• They want the disease to be cured. Or, at least,
symptom relief
• Just knowing the diagnosis label does not reduce
the problems. It does not tell the family what to do.
• If a doctor/ medical system doesn’t seem
helpful, the family looks around
• They may look at other doctors or at other hope-
providing systems
• The search is renewed at each crisis till the family
reconciles to their current approach
©2018 Swapna Kishore 29
Right in front of our mother, the
doctor said she would only get
worse and more dependent and
nothing could be done.
Our whole family was upset for
days.
What caregivers say…
…I heard there is a medicine for this
in America? Our doctor said there is
nothing…maybe he did not know…
The extended search for a cure uses up a lot
of time and exhausts the family
This extended search may last two to three years…
Bianca Brijnath points out in her book that the families wants to satisfy
themselves and others that they have done all they could.
©2018 Swapna Kishore 30
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 pages 53, 54, 76, Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath, Orient Blackswan Pvt Ltd, 2014)
 
…the search for ilāj is a combination of hope and desperation in the face of degeneration and
chaos. Biomedicine is but one part of this broader search and traditional and transcendental
medicines also play an important role in managing dementia.

End of the search
• The search ends when they reach a doctor they are satisfied with:
• Such consultations are usually longer.
• They include explanations on things like progression. The family is able to ask
questions
• They often include at least some mention of care
• Families walk out feeling clearer and more confident about the situation. They
are also more able to explain things to relatives and others.
• Unfortunately, luck is a major factor in “striking gold”:
• “We reached this psychiatrist because a doctor we knew personally suggested
his name”
• “I saw a billboard on my way to the gym”
©2018 Swapna Kishore 31
Multiple barriers, but education and pointers
would have helped
• Caregiver stories show many barriers
before families could benefit from the
diagnosis
• Caregivers said education helped. But
most of them had assumed in the
beginning that doctors would tell
them whatever was needed.
• On their own, even if vaguely familiar
with “dementia”, they did not know
about progression or treatment.
• Once they understood more, they were
able to handle things better
©2018 Swapna Kishore 32
…the symptoms were progressing and I was
trying to see what could be done. I was always
thinking of taking him to a doctor, not of
educating myself. I honestly did not know that I
could read somewhere or contact somebody
else…
What caregivers say…
…Even if they don’t have time to talk about it,
doctors can put together a pack of information.
Or give information on reliable sources where we
can read about it, educate ourselves.
Understanding Care Aspects
33©2018 Swapna Kishore
Impressions about care aspects formed
during diagnosis
• Care is rarely discussed along with
diagnosis. Caregiver stress and “care
for the caregiver” are also rarely
mentioned.
• Even if given, care advice is usually
short sentences with no clue on
how to implement.
• “Keep them active”, “Do activities with
them.”, “Take good care of her”
• Pointers for care resources are
rarely given
©2018 Swapna Kishore 34
What caregivers say…
While the doctor gave a diagnosis, it was a
clinical one with no guidelines on how to
handle her or how her condition could change.
The doctor only
told me, Keep him
happy. But what
am I to do? My
husband just
follows me all day.
Asked about what comes
next and what about
care, he (the geriatrician)
said it was not his job to
direct them to agencies.
(from Tara case study)
A missed opportunity to give an actionable
direction and hope
• Most families do not learn during diagnosis
that care can improve the situation
• Families continue to look only for medical
answers because the problem is supposed to
be medical.
• Knowing that suitable care can improve things
is empowering. It can give families something
to do, and feel hopeful.
©2018 Swapna Kishore 35
What caregivers say…
If there are support organizations
around, let us know. These things
are not so easy to find on your
own.
Asked if the doctors warned her
that care would get difficult and
need support, etc., the caregiver
said, “No, they didn’t actually. I
found out things myself.”
Putting it together
36©2018 Swapna Kishore
What can caregivers do to improve their
diagnosis experience?
• Prepare for the visit by collecting all information relevant for the
diagnosis
• Ask the right questions
• Ask for pointers for more education and support
©2018 Swapna Kishore 37
This is unrealistic to expect from caregivers who are uninformed about
dementia and not expecting the diagnosis. It may happen for second
opinions/ repeat visits, but only if the caregivers know that dementia is a
possible diagnosis and realize they need to prepare for the consultation.
Our approach should factor in India’s current
reality
• Dementia is a world-wide problem, but countries differ in their levels of
awareness and existing medical support. For example:
• In Europe, 7% of the diagnosed persons are in MCI stage, 53% in mild stage[1].
The situation in India is very different
• Stigma, too, is related to different aspects in India when compared to developed
countries with higher awareness levels. In India, instead of fear of “dementia”,
our problem is more around symptoms and mental health
• So our approach for India needs to be tuned for our starting point and
capacity constraints…
• … and adjusted to remain relevant and effective as our situation changes
©2018 Swapna Kishore 38
[1] European Carer’s Report 2018, Alzheimer Europe
Supporting more effective diagnosis
experiences: some possible actions
• In awareness programs, emphasize benefits of diagnosis
• Specifically counter the “why get a diagnosis if there is no
treatment” impression which deters families that suspect
dementia
• Help families prepare for a diagnosis
• E.g., direct them to appropriate doctors, help them put together
information needed for diagnosis
• Integrate diagnosis with appropriate education and
support. Give a “what do we do next” direction
• Examples: counselling, information packets that families can use
and share, explanations of care, pointers to support
organizations, reminders for follow-up visits
©2018 Swapna Kishore 39
Every positive diagnosis
experience improves
awareness, as it helps
society reinterpret what
was earlier called “just
ageing”
Increase in
diagnosis
Increase in
awareness
Detailed Case Studies, references,
and acknowledgements
40©2018 Swapna Kishore
©2018 Swapna Kishore 41
2010-2013
Eye specialist,
endocrinologist
Mild confusion (assumed to be ageing). But worried by father’s repetitive complaints
about dry eyes and “something in my stomach”. 20,000 times a day he would say my eyes
are dry, my eyes are dry. Several trips to eye doctor, prescribed drops made no difference
in complaints. Family felt this may not be an eye problem. Eye doctor suggested a
psychoanalyst.
Father’s endocrinologist (for thyroid) told about complaints. MRI done, showed age-
related changes. Endocrinologist said nothing is wrong.
2013
Psychoanalyst
The psychoanalyst asked many questions and told family it was dementia, memory
problems. Family kept postponing repeat visit, then dropped out.
2014 Senior
neurologist
Worrying levels of confusion, delusions, disorientation, Neurologist consulted, diagnosed
Alzheimer’s. Medicine did not help, had side-effects. Family gave up.
2014 Another
neurologist
Symptoms decline even more. Next neurologist asks for too many expensive tests, will not
use earlier reports. Family decided against this.
2015 Psychiatrist Psychiatrist asked many questions, did not repeat tests, confirmed diagnosis, explained
dementia, medicines, and care aspects. Medicine resulted in improvement. Old “eyes are
dry” problem vanished.
Case 1: Maya Parents, sibling’s family live in a metro. She was directly involved in part of the diagnosis, and in
another city for some part.
©2018 Swapna Kishore 42
Apr 2002 Uncharacteristic use of abusive language by mother-in-law (m-i-l) towards her
husband. A close family friend, a practising clinical psychologist, said “talk to them”.
Some improvement, or maybe F-i-l did not complain again
Aug 2004 Confusion noted in family gathering. Taken to neurologist. MRI done. Family told:
“patches in the brain” Medicine given to “improve memory.” No explanations. M-i-l
refused to take medicine. Children tried persuading then gave up assuming mild
problem.
Late
2005
More memory loss noted. Since m-i-l had refused to treatment earlier, family still
“largely kept quiet about it.”
Late-ish
2006
Major lapse in personal grooming noticed in family function, very uncharacteristic.
Taken to neurologist (m-i-l told it was an orthopaedist). M-i-l very upset on seeing it
was mental hospital. Another MRI done. Diagnosis: Alzheimer’s. Medicines had
severe side-effects but f-i-l insisted he would manage her alone. Family began process
of seeing how to handle.
Case 2: Pushpa: A fiercely independent elderly couple in their eighties living alone, children in same city/
abroad. Daughter-in-law Pushpa shared diagnosis experience of mother-in-law.
©2018 Swapna Kishore 43
2011-2013 Mother “slightly “off”-- repeating herself, hoarding, poor hygiene. By 2013, things worse, very
withdrawn. Sisters wanted to go to a doctor. Father was not convinced.
2013
GP
Father agreed to consult a GP with specialization in Family Medicine. GP started treating for
depression, not dementia. Explanation: depression and Alzheimer’s have same early
symptoms. Treating for depression okay but medicine for Alzheimer’s is a one-way route;
once medication started it cannot be stopped. GP upset when Tara wanted proper diagnosis.
2014
Geriatrician
Father suffered stroke. Tara moved in with parents. Took mother to geriatrician. He did
memory tests, etc. Diagnosis: Alzheimer’s. Did not give medicine as “waste of money” for
progressive disease. Asked about what comes next and what about care, he said it was not
his job to direct them to agencies.
2014:
Neurologist
Neurologist checked reports, asked the mother questions etc. Diagnosed Alzheimer’s. Said it
would not get better. Medicines may help. Medicines started. They helped.
2015:
Neurologist
specializing
in dementia
Tara moved back to her city with parents (more comfortable with medical systems and
infrastructure). Neurologist did tests, scans, memory tests, gave Alzheimer’s diagnosis.
Explained things clearly and honestly. Talked about caregiver self-care. Medicine is helping
mother. Additional diagnosis of Parkinsonism given in 2016
Case 3: Tara. Tara lives and works from one metro and used to visit her parents’ metro for a few weeks
every year. Sister in a third metro.
Acknowledgement and references
• This presentation has been made possible due to the generous sharing of personal
experiences by several caregivers who shared details about their dementia journeys even
though it often hurt them to remember things. I am very grateful to them.
• Also, gratefully acknowledging discussions with many persons working in the dementia
domain who share their observations and concerns on an ongoing basis. I am especially
thankful for the more recent and detailed discussions with Mangala Joglekar (Alzheimer
Support group, Pune) and Saadiya Hurzuk (ARDSI Hyderabad-Deccan).
• Main References:
• Brijnath, Bianca. Unforgotten: Love and the Culture of Dementia Care in India, Orient Blackswan
Pvt Ltd, 2014
• European Carer’s Report 2018: Carers’ experiences of diagnosis in five European countries,
(Alzheimer Europe)
• World Alzheimer Report 2011
• Shaji KS, Sivakumar PT, Rao GP, Paul N. Clinical Practice Guidelines for Management of Dementia.
Indian J Psychiatry 2018;60:312-28.
©2018 Swapna Kishore 44
©2018 Swapna Kishore 45
Thank you!
English site for dementia caregivers in India: dementiacarenotes.in
Hindi site for dementia caregivers: dementiahindi.com
Videos: 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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Understanding dementia diagnosis from a caregiver perspective (Ardsicon2018, India)

  • 1. Understanding Dementia Diagnosis from a Caregiver Perspective Exploring caregiver experiences around diagnosis for insights on how to improve it International Symposium on Dementia and 22nd Annual Conference of ARDSI (Alzheimer’s and Related Disorders Society of India) 14th to 16th September 2018, Indian Institute of Science, Bangalore (India) Part 1 by Swapna Kishore ©2018 Swapna Kishore 1
  • 2. This presentation… • Shares Indian caregiver stories around dementia diagnosis[1], including: • Looking for help • Selecting a doctor • Diagnosis: during and just after • Understanding care aspects • Identifies possible actions to improve the diagnosis experience 2©2018 Swapna Kishore [1]Data about diagnosis experiences has been obtained from caregivers of persons diagnosed with dementia and volunteers/ professionals supporting them. All data is anonymised
  • 3. Context: Diagnosis as a gateway for treatment and support • A diagnosis is necessary for appropriate treatment and care. • But is a diagnosis sufficient for this? Is it immediately effective? • Is it early enough to derive the best possible benefits of available interventions? • Receiving the diagnosis of a chronic, progressive disease is a major event for a family. • How well are families able to understand and process the diagnosis to benefit from it? 3©2018 Swapna Kishore In spite of the fact that we had suspected it earlier, the actual diagnosis and the medication makes you realize this is it, it is a long haul. What caregivers say…
  • 4. ©2018 Swapna Kishore 4 In India, an estimated 90% of the cases do not receive dementia diagnosis and treatment right till the end. An estimated 10% get diagnosis and interventions at some point, and receive some benefit First attempt to get medical help (howsoever feeble) Symptoms get worrying enough to seek a diagnosis. This is usually mid-stage dementia Unclear diagnosis, ignorance of dementia, denial, seeking clarity, exploring options Family members accept the diagnosis and try to give suitable care Moderate acceptance of dementia and its care implications Exploring, wavering
  • 5. Looking for help 5©2018 Swapna Kishore
  • 6. Examples of problems that led to seeking help • Families rarely seek help for mild memory problems or confusion. • Help mostly sought when care becomes difficult/ socially awkward. Examples: • Personal grooming • Symptoms prominent in social settings • Difficult behaviour that can’t be managed • Crisis created by something like wandering • Often a cluster of symptoms are seen before help sought ©2018 Swapna Kishore 6 Problems that make families seek help differ across countries. For example, the top four difficulties that prompted seeking help in Europe are: • Memory/ confusion: 83%, • Difficulties following conversations: 52.1% • Difficulty finding belongings: 50.4% • Difficulty travelling outside: 42.2% (Table 3, European Carers’ Report 2018 (Alzheimer Europe)
  • 7. Symptoms may not be noticed or may be interpreted as ageing • Symptoms may not be visible to family members. • For example, adult children may not realize there are problems as they live separately • It is common for elder persons with symptoms to hide their problems • It is also common for elderly spouses to hide problems from the children. Complaints by neighbours are often assumed to be false or exaggerated • Symptoms may be noticed but families may not feel they are because of a medical problem. • “we thought it was ageing” • Commonly used terms in Indian languages - like Saṭhiyānā (‘gone sixtyish’) in Hindi, chinnan (‘childishness’) in Malayalam and nerva frakese (‘tired brain’) in Konkani – suggest that memory loss, stubbornness , increased aggression, paranoia and suspicion are all part of ageing • Symptoms may also be attributed to retirement, bereavement, relocating, stress ©2018 Swapna Kishore 7
  • 8. The role of stigma • Stigma and Fear (of a dementia diagnosis) are often mentioned as reasons for delay in diagnosis-seeking. • In many countries, getting a diagnosis brings aspects like • Positive reactions: relief at getting an explanation for problems • Negative reactions: despair, fear of loss of personhood, reactions of others (“not quite there”, lack of respect) • Which aspects of dementia symptoms and diagnosis carry stigma in India? ©2018 Swapna Kishore 8 [1]: World Alzheimer Report 2011, The benefits of early diagnosis and intervention US/ UK reports have said that fear of a dementia diagnosis is greater than the fear of developing cancer, heart disease, diabetes or stroke[1]
  • 9. Are families in India scared of a dementia diagnosis? Most families have not heard the word “dementia” or “Alzheimer’s” before the diagnosis. ©2018 Swapna Kishore 9 I was utterly clueless. I did not know what to expect. I had not heard of dementia before. I came back and surfed for it.[2] 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 [2] as narrated by a caregiver son from a metro while talking of his reaction when he got a dementia diagnosis from a specialist [3] page 50, Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath, Orient Blackswan Pvt Ltd, 2014) We took her to a neurologist at the hospital. He told me that she had dementia, Alzheimer’s. I was hearing these words for the first time. I didn’t even know what dementia or Alzheimer’s was.[3]
  • 10. Stigma re “mental health”: an example ©2018 Swapna Kishore 10 Case: A middle-class family assumed the mother’s forgetting was old age till the day she lost her way home on a very familiar road. Her alarmed sons took her to a reputed hospital over 500 km away, where doctors did the required tests and gave the diagnosis. According to one son, 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. The family perceived stigma only after they equated the diagnosis with a “mental” problem.
  • 11. Stigma in India Some dementia symptoms are taken as natural even if inconvenient, others invoke dread and stigma and hiding. A useful way of understanding stigma as experienced in India is described by Bianca Brijnath in her book. A quote (emphasis added): ©2018 Swapna Kishore 11 Dementia sits in the juncture between ageing and mental illness and its symptoms may lend themselves to either category. ….. The stigma experienced by families depended on how others perceived them and where they positioned themselves on a scale between ageing and madness. (page 138, Chapter “Stigma and Loneliness in Care”, Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath , Orient Blackswan Pvt Ltd, 2014) 
  • 12. Selecting a doctor 12©2018 Swapna Kishore
  • 13. Selecting a doctor • Multiple factors affect this: accessibility, affordability, type of symptoms, what the person agrees to, what the family consensus is. ©2018 Swapna Kishore 13 Rarely warrant a doctor trip of their own. Symptoms may be mentioned to doctor being consulted for other health problems like diabetes and BP. Or may be mentioned to a known doctor (relative, family friend, neighbour), for quick advice or reassurance. Families actively look for medicines that can make things better. May visit their regular doctor/ neighbourhood GP, reputed hospital, specialist they consider relevant. Mild symptoms Serious symptoms that are overwhelming the family
  • 14. Reputed public hospitals: awe, respect, or dread of crowds, lack of attention • Attraction: Govt. hospitals are considered for serious problems because of their experienced doctors. Also, more economically accessible. • Deterrent: perception of crowds and long wait lists for appointments. Impression is based on past experiences and conveyed by peers. • One common comment: “We can’t make my father go through that, please suggest a private doctor.” • Families are unaware if some hospitals have improved their systems ©2018 Swapna Kishore 14 My father was very happy when we took him to [hospital name]. He kept saying, see, this is how much my children care for me.” See everybody knows about [hospital name]. So when something like this happens, serious problems, it is like a mothership, we go there because we don’t know what else to do. We don’t have knowledge on such problems. What caregivers say…
  • 15. Choice of doctor may delay obtaining diagnosis One daughter reported that initial symptoms were mild, but the family as worried because of the father’s repetitive complaints about dry eyes and “something in my stomach”. 20,000 times a day he would say my eyes are dry, my eyes are dry. Several trips were made to the eye doctor. The prescribed drops made no difference in his complaints. The father’s endocrinologist (for thyroid) was also told about complaints. An MRI was done, and it showed age-related changes. Endocrinologist said nothing is wrong. It took three years before the family realized the problem may be something else. These repetitive complaints stopped after dementia medication was started (from case study: Maya) ©2018 Swapna Kishore 15
  • 16. Diagnosis: During and just after 16©2018 Swapna Kishore
  • 17. ©2018 Swapna Kishore 17 Family lets matters rest unless severe problems During and after the consultation Doctor is dismissive about symptoms. Doctor assures family there is nothing wrong. Doctor does some investigations and then says nothing is wrong No diagnosis given
  • 18. ©2018 Swapna Kishore 18 “age-related”, “memory problems” Family lets matters rest unless severe problems Medicine tried or ignored, assumed not important During and after the consultation Doctor is dismissive about symptoms. Doctor assures family there is nothing wrong. Doctor does some investigations and then says nothing is wrong No diagnosis given Doctor gives a diagnosis or refers family to a specialist who gives a diagnosis
  • 19. ©2018 Swapna Kishore 19 Doctor gives a diagnosis or refers family to a specialist who gives a diagnosis “age-related”, “memory problems” Dementia (or type of dementia) clearly mentioned. Range of experiences regarding explanations of seriousness or progression, medicine usefulness, whether medicine given, any mention of care Family lets matters rest unless severe problems Medicine tried or ignored, assumed not important During and after the consultation Doctor is dismissive about symptoms. Doctor assures family there is nothing wrong. Doctor does some investigations and then says nothing is wrong No diagnosis given Family may pursue treatment or may drop out for multiple reasons such as belief that medicines cannot help, lack of family consensus, hopelessness, denial, search for miracles, etc.
  • 20. ©2018 Swapna Kishore 20 Doctor gives a diagnosis or refers family to a specialist who gives a diagnosis “age-related”, “memory problems” Dementia (or type of dementia) clearly mentioned. Range of experiences regarding explanations of seriousness or progression, medicine usefulness, whether medicine given, any mention of care Family lets matters rest unless severe problems Medicine tried or ignored, assumed not important During and after the consultation Doctor is dismissive about symptoms. Doctor assures family there is nothing wrong. Doctor does some investigations and then says nothing is wrong No diagnosis given Family may pursue treatment or may drop out for multiple reasons such as belief that medicines cannot help, lack of family consensus, hopelessness, denial, search for miracles, etc. Even if the family had dropped treatment, a crisis makes the family seek medical help again. Other factors also affect the family’s response, e. g., reactions of others, other life challenges, practical issues
  • 21. Family may miss salient points re history • Many families focus on what is bothering them. They may not mention milder things they consider part of ageing like the person talking to herself • Families may feel intimidated by the hospital setting, seniority of the doctor, crowds • Problems like disinhibition are not mentioned ©2018 Swapna Kishore 21 A son told me his father’s symptoms had come around four weeks ago, “almost overnight” The doctor diagnosed dementia. The son couldn’t remember if they had mentioned the rapid onset aspect to the doctor; they had been too worried about the symptoms.
  • 22. Family response depends on perceived seriousness: no diagnosis means no action • If the family members gets a diagnosis like “memory problems” or “age-related”, they have no clear name to read about or tell other family members. • Family consensus to continue treatment is less likely. • “Why go to the doctor again, this is just age” ©2018 Swapna Kishore 22 Doctors may assume they will convey the diagnosis on the next visit. But the family may not visit again if they think the problem is mild. For laypersons: “Age-related” = “normal ageing” = something we just have to cope with
  • 23. Family response changes after the situation is seen as serious ©2018 Swapna Kishore 23 Vineet and his mother noticed mild problems of memory loss, repeating himself, cognitive inability after father retired. A neurologist diagnosed premature senility after tests. Vineet explained: “Senility is what happens when someone is 75-80, my father got it earlier.” The prescribed medicine did not help but the family did not pursue because they had the impression that the medicine was meant only for short-term. They thought the problem was his retirement and some bereavement, a situational problem, not a neurological one. When, a year later, the father showed paranoia, the family realized it was serious. They went to a reputed hospital, made 4 trips, each with long waits and got a “dementia” diagnosis.
  • 24. Family consensus matters, especially if symptoms not a crisis Diagnosis gets delayed if some important family members are against it ©2018 Swapna Kishore 24 …so honestly like a thief I had to wait for my brother to go out of the station and I took the appointment. But then the doctor wanted lots of tests done, and I couldn’t proceed until my brother would agree. “That is how far my father would go”… Tara, on how her father relented about showing her mother to a GP two years after symptoms. “I took my mother to a neurologist. My father was in no position to fight.” Tara on how, she was able to pursue her mother’s diagnosis after her father had a stroke (Case study detailed later) What caregivers say…
  • 25. Denial is a problem ©2018 Swapna Kishore 25 In an interview, a daughter talked about how , for seven years after a diagnosis of “multi infarct lesions” and dementia, the family delayed information-seeking. Speculating on reasons, she mentioned busy lives, stress, viewing the mother’s behaviour as a continuation of old characteristics, but finally admitted … We are all highly educated in our family, intelligent, articulate and have very successful careers. There are enough books on the topics and information is so easily available on the internet. And yet, we didn’t bother to educate ourselves on our mother’s illness. (From https://dementiacarenotes.in/nadira-interview/) You know how it is, sometimes they (other family members) say, no let him be, we’ll see how it goes …. …. and one month became two months and then it is six months and they are saying, what is there, this is old age, memory problems happen in old age, we just have to cope… What caregivers say…
  • 26. We need to accept that there will be denial Denial can happen even if the diagnosis is clear. • May be part ignorance, part dread….. • Without guidance/ counselling, denial may be prolonged • People around the family may also encourage diagnosis denial • “this sort of thing happens with elders, you just have to handle it” ©2018 Swapna Kishore 26 I think our family worked in reactive mode, consulting a doctor when a problem was observed. What caregivers say… I think the family just hoped it was a blip that would go away
  • 27. Major problem: impression that “there is no treatment” • “There are no medicines”: so why go to a doctor and get a diagnosis? • This impression comes from articles and news coverage, doctors, etc. • Even articles on new research remind us that so far there is no medicine. ©2018 Swapna Kishore 27 The minute we read something like “we cannot treat it” we think “what is the point, why should we go to the doctor?” And I have read that you can only control the symptoms, you cannot treat them. That he (father) could benefit from something that controls or treats him symptomatically never struck us. What caregivers say… A woman said they had not visited a doctor for a diagnosis because ‘it is obvious he has Alzheimer’s’ based on some news article. They had read medicines cannot help, so didn’t see the need of a diagnosis.
  • 28. Information on medicines can be misleading and discouraging The GP started treating for Tara’s mother depression, not dementia. When asked why, the GP explained: depression and Alzheimer’s have same early symptoms. Treating for depression okay but medicine for Alzheimer’s is a one-way route; once medication started it cannot be stopped. (One year later, with another doctor) The geriatrician who diagnosed Tara’s mother’s Alzheimer’s did not give medicine, saying it was “waste of money” for a progressive disease. (Note: Tara persisted and found another doctor. This later neurologist explained more and prescribed medicines, and Tara’s mother showed a lot of improvement with them) (From Tara’s case study) ©2018 Swapna Kishore 28
  • 29. What next? Hope is important • Families want relief from overwhelming problems • They want the disease to be cured. Or, at least, symptom relief • Just knowing the diagnosis label does not reduce the problems. It does not tell the family what to do. • If a doctor/ medical system doesn’t seem helpful, the family looks around • They may look at other doctors or at other hope- providing systems • The search is renewed at each crisis till the family reconciles to their current approach ©2018 Swapna Kishore 29 Right in front of our mother, the doctor said she would only get worse and more dependent and nothing could be done. Our whole family was upset for days. What caregivers say… …I heard there is a medicine for this in America? Our doctor said there is nothing…maybe he did not know…
  • 30. The extended search for a cure uses up a lot of time and exhausts the family This extended search may last two to three years… Bianca Brijnath points out in her book that the families wants to satisfy themselves and others that they have done all they could. ©2018 Swapna Kishore 30 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 pages 53, 54, 76, Unforgotten: Love and the Culture of Dementia Care in India, Bianca Brijnath, Orient Blackswan Pvt Ltd, 2014)   …the search for ilāj is a combination of hope and desperation in the face of degeneration and chaos. Biomedicine is but one part of this broader search and traditional and transcendental medicines also play an important role in managing dementia. 
  • 31. End of the search • The search ends when they reach a doctor they are satisfied with: • Such consultations are usually longer. • They include explanations on things like progression. The family is able to ask questions • They often include at least some mention of care • Families walk out feeling clearer and more confident about the situation. They are also more able to explain things to relatives and others. • Unfortunately, luck is a major factor in “striking gold”: • “We reached this psychiatrist because a doctor we knew personally suggested his name” • “I saw a billboard on my way to the gym” ©2018 Swapna Kishore 31
  • 32. Multiple barriers, but education and pointers would have helped • Caregiver stories show many barriers before families could benefit from the diagnosis • Caregivers said education helped. But most of them had assumed in the beginning that doctors would tell them whatever was needed. • On their own, even if vaguely familiar with “dementia”, they did not know about progression or treatment. • Once they understood more, they were able to handle things better ©2018 Swapna Kishore 32 …the symptoms were progressing and I was trying to see what could be done. I was always thinking of taking him to a doctor, not of educating myself. I honestly did not know that I could read somewhere or contact somebody else… What caregivers say… …Even if they don’t have time to talk about it, doctors can put together a pack of information. Or give information on reliable sources where we can read about it, educate ourselves.
  • 34. Impressions about care aspects formed during diagnosis • Care is rarely discussed along with diagnosis. Caregiver stress and “care for the caregiver” are also rarely mentioned. • Even if given, care advice is usually short sentences with no clue on how to implement. • “Keep them active”, “Do activities with them.”, “Take good care of her” • Pointers for care resources are rarely given ©2018 Swapna Kishore 34 What caregivers say… While the doctor gave a diagnosis, it was a clinical one with no guidelines on how to handle her or how her condition could change. The doctor only told me, Keep him happy. But what am I to do? My husband just follows me all day. Asked about what comes next and what about care, he (the geriatrician) said it was not his job to direct them to agencies. (from Tara case study)
  • 35. A missed opportunity to give an actionable direction and hope • Most families do not learn during diagnosis that care can improve the situation • Families continue to look only for medical answers because the problem is supposed to be medical. • Knowing that suitable care can improve things is empowering. It can give families something to do, and feel hopeful. ©2018 Swapna Kishore 35 What caregivers say… If there are support organizations around, let us know. These things are not so easy to find on your own. Asked if the doctors warned her that care would get difficult and need support, etc., the caregiver said, “No, they didn’t actually. I found out things myself.”
  • 37. What can caregivers do to improve their diagnosis experience? • Prepare for the visit by collecting all information relevant for the diagnosis • Ask the right questions • Ask for pointers for more education and support ©2018 Swapna Kishore 37 This is unrealistic to expect from caregivers who are uninformed about dementia and not expecting the diagnosis. It may happen for second opinions/ repeat visits, but only if the caregivers know that dementia is a possible diagnosis and realize they need to prepare for the consultation.
  • 38. Our approach should factor in India’s current reality • Dementia is a world-wide problem, but countries differ in their levels of awareness and existing medical support. For example: • In Europe, 7% of the diagnosed persons are in MCI stage, 53% in mild stage[1]. The situation in India is very different • Stigma, too, is related to different aspects in India when compared to developed countries with higher awareness levels. In India, instead of fear of “dementia”, our problem is more around symptoms and mental health • So our approach for India needs to be tuned for our starting point and capacity constraints… • … and adjusted to remain relevant and effective as our situation changes ©2018 Swapna Kishore 38 [1] European Carer’s Report 2018, Alzheimer Europe
  • 39. Supporting more effective diagnosis experiences: some possible actions • In awareness programs, emphasize benefits of diagnosis • Specifically counter the “why get a diagnosis if there is no treatment” impression which deters families that suspect dementia • Help families prepare for a diagnosis • E.g., direct them to appropriate doctors, help them put together information needed for diagnosis • Integrate diagnosis with appropriate education and support. Give a “what do we do next” direction • Examples: counselling, information packets that families can use and share, explanations of care, pointers to support organizations, reminders for follow-up visits ©2018 Swapna Kishore 39 Every positive diagnosis experience improves awareness, as it helps society reinterpret what was earlier called “just ageing” Increase in diagnosis Increase in awareness
  • 40. Detailed Case Studies, references, and acknowledgements 40©2018 Swapna Kishore
  • 41. ©2018 Swapna Kishore 41 2010-2013 Eye specialist, endocrinologist Mild confusion (assumed to be ageing). But worried by father’s repetitive complaints about dry eyes and “something in my stomach”. 20,000 times a day he would say my eyes are dry, my eyes are dry. Several trips to eye doctor, prescribed drops made no difference in complaints. Family felt this may not be an eye problem. Eye doctor suggested a psychoanalyst. Father’s endocrinologist (for thyroid) told about complaints. MRI done, showed age- related changes. Endocrinologist said nothing is wrong. 2013 Psychoanalyst The psychoanalyst asked many questions and told family it was dementia, memory problems. Family kept postponing repeat visit, then dropped out. 2014 Senior neurologist Worrying levels of confusion, delusions, disorientation, Neurologist consulted, diagnosed Alzheimer’s. Medicine did not help, had side-effects. Family gave up. 2014 Another neurologist Symptoms decline even more. Next neurologist asks for too many expensive tests, will not use earlier reports. Family decided against this. 2015 Psychiatrist Psychiatrist asked many questions, did not repeat tests, confirmed diagnosis, explained dementia, medicines, and care aspects. Medicine resulted in improvement. Old “eyes are dry” problem vanished. Case 1: Maya Parents, sibling’s family live in a metro. She was directly involved in part of the diagnosis, and in another city for some part.
  • 42. ©2018 Swapna Kishore 42 Apr 2002 Uncharacteristic use of abusive language by mother-in-law (m-i-l) towards her husband. A close family friend, a practising clinical psychologist, said “talk to them”. Some improvement, or maybe F-i-l did not complain again Aug 2004 Confusion noted in family gathering. Taken to neurologist. MRI done. Family told: “patches in the brain” Medicine given to “improve memory.” No explanations. M-i-l refused to take medicine. Children tried persuading then gave up assuming mild problem. Late 2005 More memory loss noted. Since m-i-l had refused to treatment earlier, family still “largely kept quiet about it.” Late-ish 2006 Major lapse in personal grooming noticed in family function, very uncharacteristic. Taken to neurologist (m-i-l told it was an orthopaedist). M-i-l very upset on seeing it was mental hospital. Another MRI done. Diagnosis: Alzheimer’s. Medicines had severe side-effects but f-i-l insisted he would manage her alone. Family began process of seeing how to handle. Case 2: Pushpa: A fiercely independent elderly couple in their eighties living alone, children in same city/ abroad. Daughter-in-law Pushpa shared diagnosis experience of mother-in-law.
  • 43. ©2018 Swapna Kishore 43 2011-2013 Mother “slightly “off”-- repeating herself, hoarding, poor hygiene. By 2013, things worse, very withdrawn. Sisters wanted to go to a doctor. Father was not convinced. 2013 GP Father agreed to consult a GP with specialization in Family Medicine. GP started treating for depression, not dementia. Explanation: depression and Alzheimer’s have same early symptoms. Treating for depression okay but medicine for Alzheimer’s is a one-way route; once medication started it cannot be stopped. GP upset when Tara wanted proper diagnosis. 2014 Geriatrician Father suffered stroke. Tara moved in with parents. Took mother to geriatrician. He did memory tests, etc. Diagnosis: Alzheimer’s. Did not give medicine as “waste of money” for progressive disease. Asked about what comes next and what about care, he said it was not his job to direct them to agencies. 2014: Neurologist Neurologist checked reports, asked the mother questions etc. Diagnosed Alzheimer’s. Said it would not get better. Medicines may help. Medicines started. They helped. 2015: Neurologist specializing in dementia Tara moved back to her city with parents (more comfortable with medical systems and infrastructure). Neurologist did tests, scans, memory tests, gave Alzheimer’s diagnosis. Explained things clearly and honestly. Talked about caregiver self-care. Medicine is helping mother. Additional diagnosis of Parkinsonism given in 2016 Case 3: Tara. Tara lives and works from one metro and used to visit her parents’ metro for a few weeks every year. Sister in a third metro.
  • 44. Acknowledgement and references • This presentation has been made possible due to the generous sharing of personal experiences by several caregivers who shared details about their dementia journeys even though it often hurt them to remember things. I am very grateful to them. • Also, gratefully acknowledging discussions with many persons working in the dementia domain who share their observations and concerns on an ongoing basis. I am especially thankful for the more recent and detailed discussions with Mangala Joglekar (Alzheimer Support group, Pune) and Saadiya Hurzuk (ARDSI Hyderabad-Deccan). • Main References: • Brijnath, Bianca. Unforgotten: Love and the Culture of Dementia Care in India, Orient Blackswan Pvt Ltd, 2014 • European Carer’s Report 2018: Carers’ experiences of diagnosis in five European countries, (Alzheimer Europe) • World Alzheimer Report 2011 • Shaji KS, Sivakumar PT, Rao GP, Paul N. Clinical Practice Guidelines for Management of Dementia. Indian J Psychiatry 2018;60:312-28. ©2018 Swapna Kishore 44
  • 45. ©2018 Swapna Kishore 45 Thank you! English site for dementia caregivers in India: dementiacarenotes.in Hindi site for dementia caregivers: dementiahindi.com Videos: 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