This presentation was made online on May 27, 2020, at Andhra Pradesh Human Resource Development Institute as part of their Knowledge Sharing Sessions. It starts with an overview of dementia home care and the status in India, to help appreciate challenges posed by COVID 19 in such care. It discusses aspects like how to protect someone with dementia from COVID, how to modify care due to COVID risk and also restrictions due to lockdown and such measures, , and how to manage medical support in these challenging times. As dementia care can be very stressful, it also discusses self-care and suggest some practical ways to manage such care in these times. Finally, it looks at ways caregivers can be supported by systems around us, including how these need to be integrated with other health care and support systems.

1. Dementia Home Care
During COVID-19
By Swapna Kishore
Email: cyber.swapnakishore@gmail.com
Main websites: dementiacarenotes.in and dementiahindi.com
Also, presentations at: slideshare.net/swapnakishore
This was presented online on May 27, 2020 at
Andhra Pradesh Human Resource Development Institute (AP HRDI)
as part of their Knowledge Sharing Sessions

2. In this presentation
Overview of dementia home care - its challenges and
support systems
• To help appreciate the work and stress
Dementia care during COVID-19
• Protecting from infection, changes in care, impact of
restrictions/ relaxations
Caregiver stress and self-care
Supporting dementia home care
• How other persons, systems, structures can help
2Swapna Kishore

3. Overview of dementia
home care - its challenges
and support systems
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4. What is dementia
Essentially, dementia is the name for a group of symptoms
(not just “memory loss”) - symptoms and intensity differ
across persons
Dementia could be caused by a variety of brain illnesses - like
Alzheimer’s Disease, Vascular Dementia, Dementia with Lewy
bodies, Fronto-Temporal Dementia, etc.
4
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, 2012)
Swapna Kishore

5. Dementia symptoms and stages
Symptoms depend on how the brain gets affected by the illness.
• Early Stage: Often confused with 'old age’.
• Typical symptoms: short-term memory problems, language problems, difficulty in
making decisions, mood changes, depression, anxiety, aggressive reactions, loss of
interest in hobbies and activities.
• Middle stage: Limitations more visible, more restricting.
• Typical symptoms: Very forgetful. Wandering, repetitive behaviour, clinging,
problems with daily tasks, needs help with tasks like toileting, washing and dressing.
Problems recognizing places. Hallucinations.
• Late Stage: Near total dependence and inactivity.
• Typical symptoms: Serious memory disturbances. Physical symptoms very obvious.
Problems eating, walking. Bladder and bowel incontinence, breathing difficulties,
confined to a wheel chair or bed
Dementia may go on for a few years, or even more than a decade. Care is
adapted as it progresses –initial focus is on independence and empowerment,
followed by keeping person safe and supported, and finally providing comfort.
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6. Who gets dementia?
Anyone can get dementia.
There are many risk factors, but the
most clear risk factor is growing old
In South Asia, dementia prevalence
doubles for every 6.6 years
increase in age and in the 90+ age
group, 44.1% have dementia
Different states in India are at
different levels of the dementia
challenge, based on how they are
“ageing”
6
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%
Alzheimer’s Disease International:World Alzheimer Report 2015 Table 2.6
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7. Diagnosis
• Diagnosis required to see if someone has dementia
and to start treatment and care plans
• If symptoms are due to treatable medical conditions, the
person can get relief with treatment
• Unfortunately, India has a huge treatment gap: Only
around 10% of dementia cases get a diagnosis[1]
• Dementia is diagnosed when daily activities become
difficult
• Some persons have mild cognitive impairment (MCI) –
this does not interfere with independence in everyday
activities. They may or may not develop dementia later
7
[1]: Dias A, Patel V. Closing the treatment gap for dementia in India. Indian Journal of Psychiatry, 2009, 51 (5): 93–97.
Swapna Kishore

8. Treatment
• There are no treatments that can cure dementia, or
even alter the progressive course of dementia
• Some help is possible to reduce symptoms. These
may improve quality of life or reduce worrying
behaviours
• As the role of medicines is limited, suitable
caregiving is critical. It affects the quality of life of
the person (and everyone around)
• Guidance and support on care is scanty even for families
that get a diagnosis
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9. Almost all care is at home, usually
by women
• Estimate of persons with dementia in India in 2015:
44 lakhs[1]
• Huge service gap:
• Services offered exclusively for people with dementia: Day cares
– 15, Residential care facilities – 12[1]
• Some additional support from services for multiple geriatric/
neurological conditions – these are not exclusive for dementia,
but may accept persons with dementia
• Clearly, almost all persons with dementia are being cared
for at home
• Women are the main caregivers
9
[1] Ref: Dementia India Strategy 2018
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10. Healthcare systems, home
healthcare services , hospitals,
emergency support
Important systems like
banks, transport, legal
system, tax.
Dementia-specific
information and support
available to families
Understanding of
dementia and care by
people around family
Family dynamics, multiple
roles and responsibilities,
constraints, and conflicts,
coordination of carePast history of PwD and
others involved in care
PwD’s medical condition,
needs, and problems
faced
Home situation for care
Caregiver activities to support
PwD
*PwD = Person with dementia
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The Care Environment

11. To provide care
• Education: what is dementia, how it affects the person’s
abilities, moods, behaviour, and so on
• Learn care skills: like how to communicate, help with daily
activities, manage changed behaviour
• Design and follow a suitable daily routine
• Should include essential care tasks, exercise and activities for
cognitive and social engagement
• Provide a balance between rest and stimulation
• Give the person a predictable routine to get used to
• Plan for the future, especially late-stage dementia care
• Ensure balance between care work, other roles and
responsibilities, financial implications, self-care,…
11
Care has to be person-centric and integrated with the social and familial situation
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12. Dementia care and normal senior
care
• Dementia care different from caring for a senior
without dementia
• This is because of the person’s cognitive impairment.
Family members have to change the way they
interact with the person. This is difficult
• Example: communication
• Need to be face-to-face, talk clearly and slowly, make eye
contact, be reassuring, give person enough time to
respond. Choices given have to be limited
• Normally, we are not always so careful while talking
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13. Wandering
While all seniors get confused sometimes, disorientation in
dementia is much more severe
Wandering is one example. Persons who “wander” are not
trying to get lost – they have a reason to wander, based on
their understanding of their life and environment
• The person may want to catch bus to go to office - years
after retirement. Or want to go “home” - but home is where
they lived 30 years ago
• The person may be disoriented about time or place, as in a
new place (train, market, etc) or even at home. For example,
they may try to reach the bathroom and walk out instead
Explanations do not work because the person may not
understand them. Or may forget them because of the need
they are trying to meet
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14. Dementia care is stressful
• Goes on for years, requires
many compromises with other
roles and responsibilities. May
also have major financial impact
• Society support may be low, as
the work is seen as normal and
part of ‘duty’
• Caregivers also affected
emotionally seeing a family
member decline and die
• Main impact is on this primary
caregiver, but entire family
affected
14
Compared to caregivers for
people with conditions other
than dementia, caregivers to
adults with dementia had
increased prevalence and
incidence of depressive
disorders, had higher mean
levels of perceived stress, …
From: Women and Dementia:A global researchreview,
Alzheimer’s Disease International
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15. Seven actionable areas –
Dementia India Strategy 2018
1. Make dementia a national health and
social care priority
2. Dementia Awareness and dementia
friendly communities
3. Risk reduction and dementia
prevention
4. Improve access to best medical care,
strengthen standard treatment
protocols
5. Social support services
6. Research and Development
7. Strengthen dementia disease
surveillance system
15
Identified action points
include actions in the
dementia domain and also
other healthcare systems.
For example, need for multi-
sectorial approach,
integration with other old
age plans, NCD screening,
pollution reduction, inclusion
in various healthcare
systems, subsidies,
insurance, old age pension
plans
Swapna Kishore
Ref: Dementia India Strategy 2018

16. Dementia care during
COVID-19
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17. COVID infection and seniors with
dementia
• COVID-19 infection is more serious in seniors, especially
seniors with comorbidities
• Recommendations issued for seniors includes
• Stay at home unless need to go out for necessary work or
health purposes
• Guidelines available on how to care for seniors at home
• Also, improve immunity (guidelines available from AYUSH)
• Even more difficult if someone with dementia gets
infected with COVID or needs quarantine:
• Hospital stay and isolation is more frightening and
disorienting. The person may not understand what is
happening or say what he/ she wants
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18. Protecting person with dementia
from COVID: additional challenges
• Dementia persons may not understand or remember about COVID:
• Explanations will need to be simplified, repeated, and free of anything alarming.
• When person with dementia is at home, others must take all
precautions
• Everyone interacting should take precautions like masks, distancing, wiping
surfaces, washing hands.
• Caregivers performing direct help (like bathing, feeding) have to be extra careful
• Person with dementia may get upset because caregivers are wearing masks –
face unrecognizable, voice may be muffled. Caregivers have to be more
reassuring and gentle
• Person may refuse to wear mask, wash hands repeatedly, etc. Caregivers have
to decide what is required and practical for dementia person to do.
• If person needs to go out, precautions must be maintained
• As person may not remember the accompanying caregiver will have to be very
alert
• Need to be careful about infection even after lockdown is relaxed –
people around may be asymptomatic carriers, and also may be less
careful now
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19. Lockdown impact on care
• Disruption in the person’s daily routine.
Caregiver busier. Outside walks not possible.
Reduced activities. Regular attendant may not be
coming. Masks, social distancing by caregivers
• Changed home environment: more people at
home, more noise, work. On the other hand, no/
fewer visitors, regular help may be absent
• Major family challenges and stress: like job loss,
pay cuts, uncertain future, increase in substance
abuse and domestic violence
• Impact on person with dementia may include:
cognitive decline, mood changes, disorientation,
distress, agitation, boredom, isolation,
withdrawal. Increase in worrying behaviours like
wandering
19
Social distancing
measures …have
resulted in increased
isolation and great
disruption to people’s
daily activities that
contribute to brain
health. As a result, we
are concerned that the
number of people
experiencing cognitive
decline may increase
(WHO 73rd World Health Assembly Statement submitted
by Alzheimer’s Disease International ,)
Swapna Kishore

20. Possible behaviour changes in
persons not diagnosed earlier
• 90% cases not diagnosed, but their cognitive ability is
poorer
• These persons may not show obvious symptoms when in
familiar setting following their daily routine
• Typically, symptoms more visible when there is a change –
different city, bereavement, major change at home
• Due to COVID/ lockdown changes, someone with
undiagnosed dementia may show agitation or not adjust
the way the family expects
• Need for diagnosis, but family may not realize that, or
getting a diagnosis is trickier due to COVID/ lockdown
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21. Lockdown changes and late-stage
care
• Late-stage care has to balance many support
systems
• because the person is fully dependent, often bedridden,
communication very poor, and there are comorbidities
• Available support systems poorer under lockdown
constraints and related tension
• Getting medical support especially difficult
• like home visits of doctors, nursing attention (like drips),
handling emergencies, taking decisions around medical
intervention, getting palliative support and end-of-life
care and decision-making
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22. Lockdown and dementia seniors
living alone
• Some seniors live alone – elderly couple, or single
• These seniors face more problems:
• Handling essential needs while also staying safe from COVID
• Finding helpers
• Support for such seniors depends on neighbours, other
networks
• Children/ relatives outside try to coordinate care from a
distance
• Actual care tasks are done by people and systems close to the senior
• Remote monitoring not possible, if home not set up for it
• Due to COVID travel restrictions, children may not be able to reach
easily in a emergency
• If person living alone has dementia, understanding and
implementing precautions much more difficult
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23. Relaxation in lockdown brings its
pros and cons
• Lockdown is being relaxed in steps. Relaxation makes it
easier to get things, go to places, resume work. Tension
created by lockdown may reduce
• But relaxation can bring new challenges….
• As people resume normal work and life, the person may not
understand he/ she is still vulnerable and may protest at the
precautions being taken
• More people resume interacting with the person and may not
follow precautions; risk of exposure goes up
• The person may insist on things like outside walks, trips, etc,
but not follow precautions
• The person may have become used to the new way the home
was working, and now has to adjust all over again!!
• (all changes cause disruption☺)
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24. The key to care: establishing a new,
suitable daily routine
• The new routine should be based on the old routine,
adjusted for the changed situation (both lockdown and
relaxation in lockdown)
• Should be practical (may not be “ideal”) and not fatiguing
• Should be feasible and safe in current lockdown situation
• Switching to this to be done at an acceptable pace
• The routine should balance rest and stimulation and include:
• Safe, at-home physical activities, like chair taichi, chair yoga, chair
suryanamaskar
• Interesting but do-able cognitive activities, fun things to do together
• Social connection with relatives, friends through safe phone and
online modes
• Entertainment - old TV reruns, movie clips and songs, bhajans, etc
• “Outdoor” possible from/ near home, like sitting in balcony
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25. Chosen routine and approach
should suit all family members
• Family members should appreciate the impact of lockdown etc on
dementia person and remain alert:
• E.g., wandering, overstimulation
• Need for discussion to distribute tasks between everyone: Distributed
in a way that the dementia person will be comfortable
• Focus should be on essential tasks and objectives
• Tasks can be chosen so that a single activity meets multiple objectives,
E.g.,
• Playful interactions while washing hands (counting rhymes, playing with
bubbles)
• Simple chores can be used as joint play (like shelling peas)
• Choices should be practical given the home environment: Caregiver
workload should not be increased unless essential. Daily routine should
not cause fatigue.
25Swapna Kishore
In the event of domestic violence and abuse, managing that is priority

26. Medical support during COVID:
major concern area for families
Types of worries people have:
• How will I reach a doctor if there is an emergency?
• How do I know what to do about regular check-ups?
• How do I get the medication reviewed if there are some
behaviours/ symptoms that worry me?
• If I go to a hospital, is there a risk of getting infected?
How do I decide what is the right thing to do?
• What sort of transport can I use? Will I need e-passes?
A lot of fluidity around the situation and rules adds
to uncertainty
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27. Buying medicines, getting tests
and investigations done
• In early lockdown days, problems were faced reaching
pharmacies and getting specific medicines. Ability to get tests
and investigations done was also poor
• Situation better - as lockdown relaxed, but some issues
remain
• Many families realized they don’t have up-to-date
prescriptions
• Getting regular medical reviews and updated prescriptions is
advisable. Recent prescriptions are also needed for some medicines
• Families unclear about tests and investigations done –
required or not, whether home sample pickup or trip to lab -
because of risks
• Telemedicine can be used to get proper review of cases, get
advice on tests and investigations, and also get updated
prescriptions
27Swapna Kishore

28. Telemedicine: recommended for
non-emergency medical advice
• Telemedicine guidelines are now available and the
Govt has suggested that people use telemedicine
for any non-emergency medical advice
• Many doctors, hospitals, and medical service
providers have made teleconsultation available
• With lockdown relaxation, it may be easier now to
reach doctors and hospitals or have home visits
• However, given that such trips are still risky, use of
telemedicine remains a safe option for families to
get medical advice from their homes
28Swapna Kishore
Contd…

29. Telemedicine (contd.)
• As telemedicine is a new modality, families are not used
to it. Doctors / service providers also not experienced
• Some aspects families should understand and prepare for
• Selection of doctor (better go to regular doctor familiar with
the case. A new doctor may hesitate to give advice)
• Keeping required case history, medication list, test reports,
questions etc ready
• Choosing a mode that makes communication easier (like video
instead of only audio or text)
• Understanding what is possible through telemedicine and what
is not (old/ new case, medical condition being consulted for,
type of medicines, etc.)
• Get prescription in proper format
29Swapna Kishore

30. Visiting a doctor/ hospital is
unavoidable at times
• A COVID helpline should be contacted for COVID like
symptoms
• A trip to a hospital may be required for many situations:
• An emergency like an accident or a cardiac event. Delay can make
things worse
• Procedures like dialysis, chemotherapy, etc. These can be scheduled
and coordinated
• If going out, all precautions must be followed. Alertness that
the person keeps the mask on, hands are sanitized, etc.
• While planning, clarity is required on rules like how many persons
can accompany a patient in car/ inside hospital. (Stay informed about
changing rules)
• Teleconsultation can provide advice on other medical
problems to decide whether there is need to visit a hospital
30Swapna Kishore

31. Things to keep handy for
emergency
❑COVID and non-COVID helpline numbers
❑Numbers of ambulances, emergency cab services, and other
possible transport options
❑List of good, nearby hospitals that handle non-COVID
emergencies
❑Numbers and links for the local police and for emergency e-
passes. Normally, emergency travel is not a problem, but good to
stay informed. FB and Twitter handles of the police and municipal
commissioner handy – useful for a quick query or asking for help
❑Medical file, insurance cards, current medications (for both
caregiver and person with dementia), money, and some supplies
❑List of persons and numbers to call for help for the trip
❑Clarity on who will take over the person’s care if the primary
caregiver is unwell.
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32. Caregiver stress and
self-care
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33. Caregiver Self-care: essential, but
often forgotten. Or “difficult”
• Caregiving is a very stressful role. Dementia care is
supposed to be one of the most difficult types of
caregiving. The COVID situation adds to the stress
• Self-care is recommended to cope with stress, and to be
able to handle care work
• Like “wear your own oxygen mask before trying to help others” -
in airlines
• Several tips are available under labels like self-care, mental
health care, coping with anxiety, depression, etc.
• In practice, caregivers (especially primary caregivers) may
not do enough self-care
• They are already stressed and unable to jumpstart on “self-care”
33Swapna Kishore

34. Common tips given for self-care
These are good, useful tips that can help if even partly implemented
• Stay calm and follow a daily routine. Eat healthy. Be gentle with yourself
• Do home-based exercise to stay fit
• Do activities that engage, are useful/ meaningful, reduce boredom and
anxiety
• Stay socially connected with family and friends
Specially useful for COVID: Stay informed but don’t get
overwhelmed.
• Use only authoritative sources for reliable information. Limit media time.
Focus on information you need to do things
Important to take help if overwhelmed. Taking help is also self-care.
Talk to someone you trust, contact psychosocial helplines
34Swapna Kishore

35. Self-care: practical problems and
possible actions
• Caregivers unable to use tips that need more ideal home situations.
Problems mentioned:
• Low privacy/ space: Can’t chat with friends, journal, meditate, exercise
• Required equipment/ goods not available: Computer, TV taken over by
others staying at home. Things needed for hobby not available.
• No time and energy for complex self-care activity: Repeated interruptions,
expectations from others.
• Already stressed caregivers find it difficult to plan and do self-care
• Caregivers can start with small steps that don’t need equipment/
time/ space/ privacy, and can be done many times a day
• Examples: : take three deep breaths every time you enter a room, use a
ringtone that relaxes, use headphones for favourite song while doing
household work, use Whatsapp to connect with at least a few friends every
day if calling not possible, or call from the bathroom
• Staying safe from COVID is also part of self-care - follow safe practices
to avoid infection (in spite of relaxation of lockdown)
35Swapna Kishore

36. Supporting dementia
home care
36Swapna Kishore

37. How countries are handling
dementia support in COVID times
• Dementia organizations in various countries have closed their in-person
support and communities (these may open after it is considered safer).
Instead, support is being provided through various online/ phone mode,
like:
• Follow-up calls made to families to stay in touch
• Educational material made available online as manuals, short videos, e-learning
• Also, information on COVID for persons with dementia
• Online caregiver meetings
• Webinars and talk shows
• Helplines, phone support
• Online activities, Whatsapp groups
• Relaxation activities online
• Also, arrange for some doctors who can make home visits
• The ability to move online differs across organizations
37
Ref: ADI webinar on supporting people with dementia during COVID-19, https://www.youtube.com/watch?v=tNoXfedh3So
Swapna Kishore

38. Available dementia care support in
COVID times
• Existing services like day care, memory café, etc., have closed.
Some organizations have started online support. For online/
phone support, family can look at any online support in India (if
language matches)
• Useful support also available from organizations in related fields
like mental health, senior citizen groups, Parkinson’s movement
groups, etc.
• Even international resources can help if in language you
understand, on topic of interest, and sufficiently matching
culturally. Forums are useful for experience sharing and tips
• Challenge faced: How to locate what is available and select the
type of help needed. How to get match on language and culture.
How to get help for similar socio-economic situations
38Swapna Kishore

39. Support should be available and
publicly visible
• More support online/ phone/ TV/ radio/ community radio based etc , multi-
lingual, and suitable for all demographic profiles
• Databases for medical resources like doctors who do home visits,
recommended telemedicine doctors for dementia, maybe even guidance for
new suspected cases
• Support for variety of problems faced (could provide referrals if cannot help
directly) . Such as:
• Dementia care specific queries, experience sharing, counselling
• Staying mentally and physically healthy when in lockdown/ isolation
• Coping with COVID and its impact
• Extreme problems: stress, domestic conflict, violence, abuse, extreme poverty
• Training/ guidance to empower families to use digital platforms, social media,
and reach volunteers/ corona warriors – as systems transitioning to depend
more on these due to “minimize contact” approaches
• Advocacy efforts to sensitize services like police about seniors with dementia.
Special attention is required for seniors living alone
39Swapna Kishore

40. Adapting support to remain useful
during COVID and post-COVID
• Education: More IEC material and classes etc to be
made available on multiple media, suitable for low-
resource settings and less literacy
• Diagnosis:
• Need grassroot workers who can detect potential problem
that needs diagnosis
• Need to support families to get initial diagnosis or support,
possibly through telemedicine
• Need to support situations where hospital trips are required
• Need databases of health professionals
• Such adaptation is required across multiple health
domains. Experiences and learning can be shared
across domains
40Swapna Kishore

41. Dementia support needs to be
integrated with other systems
• Dementia care does not happen in
isolation. People face the problems along
with their social problems, economic
problems, health problems, stretched
resources and other problems
• Worse in disadvantaged families, and for
women
• When redesigning systems for COVID,
should integrate dementia care, including
training for healthcare workers
• Systems should remain relevant and
useful even after COVID challenges
reduce
41
“We call on all governments
to include dementia in their
COVID-19 response plans.”
(WHO 73rd World Health Assembly
Statement submitted by Alzheimer’s
Disease International)
Dementia India Strategy
2018 recognizes multiple
policy enablers that need to
converge to strengthen
dementia relevant services.
Swapna Kishore

42. Putting It Together
42Swapna Kishore

43. Putting it together
• India has a large number of persons with dementia, but most are undiagnosed.
Care is almost always at home, and support is poor. Dementia caregiving is very
stressful
• Given India’s expected demographic aging, dementia will be a larger problem in
future
• While seniors are more vulnerable to COVID complications, those with dementia
present additional challenges both in protecting them from infection and in
their care – like handling their day to day care and medical aspects of care
• Caregivers need information and support to adapt to the special challenges
posed by COVID - through education, suggestions and resources. Caregivers also
need help for self-care
• COVID has created tough changes for most families. Dementia adds to this
complexity and stress. Effective support systems need to be sensitized for
dementia and consider the entire context of the family to provide usable
support
• As various healthcare systems are being adapted for COVID, supporting
dementia home care needs to be integrated into these. This will remain useful
even when the COVID challenge eases
Swapna Kishore 43

44. Thank you
Swapna Kishore
Email: cyber.swapnakishore@gmail.com
Main sites: dementiacarenotes.in and dementiahindi.com
Also, presentations at: slideshare.net/swapnakishore