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Dementia home care during COVID 19 (presented at AP HRDI, May 2020)


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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.

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Dementia home care during COVID 19 (presented at AP HRDI, May 2020)

  1. 1. Dementia Home Care During COVID-19 By Swapna Kishore Email: Main websites: and Also, presentations at: 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. 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. 3. Overview of dementia home care - its challenges and support systems 3Swapna Kishore
  4. 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. 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. 5Swapna Kishore
  6. 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 Swapna Kishore
  7. 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. 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 8Swapna Kishore
  9. 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 Swapna Kishore
  10. 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 10Swapna Kishore The Care Environment
  11. 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 Swapna Kishore
  12. 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 12Swapna Kishore
  13. 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 13Swapna Kishore
  14. 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 Swapna Kishore
  15. 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. 16. Dementia care during COVID-19 16Swapna Kishore
  17. 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 17Swapna Kishore
  18. 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 Swapna Kishore 18
  19. 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. 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 20Swapna Kishore
  21. 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 21Swapna Kishore
  22. 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 22Swapna Kishore
  23. 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☺) 23Swapna Kishore
  24. 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 24Swapna Kishore
  25. 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. 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 26Swapna Kishore
  27. 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. 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. 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. 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. 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. 31Swapna Kishore
  32. 32. Caregiver stress and self-care 32Swapna Kishore
  33. 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. 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. 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. 36. Supporting dementia home care 36Swapna Kishore
  37. 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, Swapna Kishore
  38. 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. 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. 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. 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. 42. Putting It Together 42Swapna Kishore
  43. 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. 44. Thank you Swapna Kishore Email: Main sites: and Also, presentations at: