The COVID 19 pandemic has made home care of someone with dementia even more challenging. Caregivers have to protect the person from infection, help the person adjust to the changed situation, create a suitable new daily routine, get required medical support etc. Families are still trying to handle multiple challenges, uncertainties, restrictions, fear and stress in this “new normal”.
India is currently in the grip of COVID wave 2, with cases rising extremely fast and healthcare systems stretched to the extreme. It is even more important for families to stay safe from COVID and keep the person with dementia safe, and to stay informed on the various lockdown/ containment type restrictions and health care systems as applicable to their location. These depend on the local governments’ assessment of the COVID situation. They affect availability of transport, whether travel is allowed and at what time for what purpose, type of passes required, rules for doing work, travelling, etc. There are also systems on how persons can get tested and what protocols need to be followed. Fortunately, vaccinations are now available, and as larger sections of the population get vaccinated, the situation may come under better control. As persons with dementia are more likely to forget COVID appropriate behavior, and more at risk and vulnerable, vaccination should be considered for them. Their family members and caregivers should also get vaccinated to reduce the chance of their passing on an infection to the person with dementia.
This page has been created as a resource for families in India supporting home care for someone with dementia. It is also relevant for people supporting such families. The page does not provide medical advice or information on COVID 19 as such. For that, please check authoritative sources like India’s Health Ministry site Opens in new window and the WHO site Opens in new window The focus of the page is care-related discussion relevant in the COVID 19 infection context, including lockdown and unlock implications and vaccination.
On this page:
- Protect dementia persons from COVID 19 infection (includes update on vaccination) .
- Minimize the person’s disorientation and disruption.
- Ensure continued medical support.
- Look for available dementia care support.
- Opt for a sustainable approach.
- Find special ways for remote support.
- Additional tips for family caregivers.
- What others can do to help.
- Collated Resources.
Lockdown was first imposed on March 25, 2020, and was subsequently revised and relaxation done selectively in geographical areas. A year later, almost all restrictions were relaxed somewhat except for “containment” zones, but many requirements and SOPs (standard operating procedures) were to be followed. However, with wave 2, there is need for firm steps to control the increasing number of cases and to be able to test and treat better. The Ministry of Health has issued an advisory with containment framework Opens in new window and many states and union territories are again using lockdown or stern measures to arrest wave 2. The need to protect vulnerable persons continues to be recognized in all orders. (ref: Order from Ministry of Home Affairs, India Opens in new window )
Requirements like wearing masks in public and maintaining social distance etc are not just good COVID-appropriate practices but violating these are offences that may invite penalties and prosecution, as per various Govt orders. Ensuring that the person with dementia follows these is therefore critical.
Clearly, protecting someone with dementia from infection is a priority as COVID 19 infections have more serious implications for seniors, especially seniors with comorbidities like dementia. Also, if infected and needing treatment, persons with dementia face more problems. They typically get more disoriented in hospital settings, may not understand enoughunl about COVID or the required precautions etc, and may not be able to communicate their needs or problems.
When the pandemic started, the Government of India issued a document, Advisory for Senior Citizens during COVID 19 Opens in new window. Among other things, it recommends that seniors should stay at home, avoid visitors, follow various good hygiene practices, and take care of their health. It also advises that persons looking after seniors should wash hands before helping the persons, use face coverings when attending to the senior, wipe surfaces that were used frequently, ensure the senior is assisted properly and also ensure proper nutrition and hydration. It emphasizes that carers suffering from any symptoms should not go near seniors. In general, to protect the person from infection, family members need to stay safe from infections as well as take precautions when interacting with the person.
We cannot relax actions taken to keep seniors safe from the infection so long as the pandemic continues. The latest order continues to recognize vulnerable sections of the population and advise that : Persons above 65 years of age, persons with co-morbidities, pregnant women, and children below the age of 10 years are advised to take necessary precautions. With wave 2 in many parts of India now, and with new variants of the virus, the risk of exposure to carriers of COVID is much higher now. Many infected persons are asymptomatic, and exposure may happen inadvertently. As persons with dementia may not maintain the required precautions (masks, social distancing, hand wash etc), the family has to continue to take precautions. These aspects are discussed below.
One major step to boost immunity is COVID vaccination. As part of Phase 2 of India’s vaccination drive, from March 1, 2021, the eligible category was opened for all persons above 60, and those persons in the 45-59 age group who have one or more of a defined set of co-morbidities (dementia is part of “disability” in these). From April 1, 2021, anyone over 45 is eligible for the vaccine. Vaccine eligibility is being expanded in phases. Families need to seriously consider getting persons with dementia vaccinated, subject to any other medical advice and managing the logistics. If eligible, their family members and caregivers should also get vaccinated. Some relevant aspects to remember:
The authoritative site for registering for vaccination and knowing related processes etc (all vaccination needs registration) is www.cowin.gov.in Opens in new window Alternate place to register is www.aarogyasetu.gov.in Opens in new window. More options and information about registration can be seen on these sites.
- Please consult your doctor for any doubts around vaccination, especially if there are other medical conditions also. This may include discussion on whether some medication needs to be paused, some treatment cycle completed, or a gap given between other vaccinations and COVID vaccine etc. also, any doubts about side effects and when to consider them serious. Some concerns of persons with various comorbidities are also discussed in : COVID 19 Vaccines: FAQ for people with co-morbidities Opens in new window
- Registration is a must to get vaccinated.. You can visit www.cowin.gov.in Opens in new window or www.aarogyasetu.gov.in Opens in new window
- Be clear about the vaccination process and choose a modality that suits you (convenient vaccination centre registration method, appointment or walk in). If necessary, get a medical certificate.
- Also, carry data about the various medical conditions of the person to be vaccinated as the doctors at the vaccination centre may ask for some data on this (keeping the latest prescription handy may be useful even if no specific medical certificate is required)
- Plan for the trip, such as for things to be carried if you think the wait may be long (water, snacks, hand sanitizer, extra masks, etc).
- If getting the person with dementia vaccinated, see if you can arrange so that the person with dementia doesn’t have to wait long, and also ensure some family member stays with the person so that the person does not get disoriented/ confused/ agitated.
- (A useful set of tips is available in this blog post: Tips for Senior Citizens for Taking Covid Vaccine Opens in new window)
- Be ready for more care for the person with dementia after the vaccination as there may be minor side-effects but these could worry the person who may need more attention and consolation. It is possible that the person may not tell family members about any discomfort or side-effects caused by the vaccine (like fever, soreness, etc) and family members must remain alert.
- If the caregiver is getting vaccinated, ensure there is some alternate caregiver for the person with dementia for some days, in case the caregiver getting vaccinated gets some side effects after vaccination.
- Be careful to ensure that both doses of the vaccine are taken as per the recommended interval
- Also, even after vaccination, all required COVID appropriate behavior needs to be followed, as the vaccine reduces the chance of infection, but does not remove it.
- It is currently unclear how vaccination can be done for people who cannot leave home/ are bedridden, but vaccination is now being made available at any venue (housing society, offices etc) where there are enough persons to be vaccinated. Remain alert on news for such options and for when vaccines may be possible even at home, if the person with dementia cannot be taken to a vaccination centre or is at too high a risk for any outside trip.
- See the “resources” section for vaccination specific resources and some useful articles with FAQs etc on vaccination for seniors/ persons with comorbidities.
Also, there are various general and traditional suggested ways to improve immunity, such as the recommendations of the Ayush Ministry Opens in new window.
Persons with dementia are at greater risk of COVID is because they may not understand or follow COVID appropriate behaviour to stay safe, their caregivers come in close contact while helping them and may be carriers, and also, the person may not alert family members if there are symptoms and therefore may not get treatment in early stages of thsune infection. These additional challenges while protecting persons with dementia from COVID are discussed below:
- Understanding COVID: Persons with dementia may not understand about COVID or may be disoriented or disturbed by changes around them. Explanations of COVID may not register or may not be remembered. So, if explanations are required, they need to be simple, repeated often, and supplemented with pictures/ cartoons. It may suffice to just broadly say there is a problem that requires such precautions. Explanations should definitely not be alarming.
- Problems adjusting to personal hygiene type changes, especially face coverings used by caregivers while doing tasks like bathing, feeding, etc.: Faces look different, expressions are not visible, speech may not be clear. Special effort will be needed to ensure the person is comfortable with the caregiver wearing a face covering.
- Hygiene practice changes for stay-at-home persons with dementia: Opinions differ on their need to wear face coverings or greatly increase frequency of hand washing. Many feel these are not required if all other precautions are followed. In any case, the person with dementia may not agree to wear a mask as it is uncomfortable. Many report that persons with dementia get agitated and remove any face covering. The person may also refuse to wash their hands often. Practical aspects and the benefit of these actions need to be considered to decide what changes to make.
- Aim for better ventilation indoor as the virus may remain airborne for some time in closed spaces without cross-ventilation.
- Extra care to not pass infection to person: It is possible that family members don’t wear masks at home, and may not do so even if helping the person with tasks that require close contact. Infection spread is more common within a family if even one person gets infected, so extra alertness is needed by family members that they should not be COVID infection carriers (they may have the infection and may not show symptoms). Alertness if also needed to detect any sign that the person is infected (the
There are situations where a person with dementia may not remain at home, such as if living alone and needing to shop, etc. This is far trickier because the person needs to stay alert about the hygiene practices but may not understand or remember them. Another situation where the person with dementia may have to go out is when a visit to a hospital is needed, and all precautions are required for any such trip.
Overall, it is a challenge to protect the person while also performing all required care and reducing/ removing the person’s agitation with the changes required. Forums can be useful to read shared tips and experiences and see if there is something suitable, and to post queries and discuss with others.
COVID 19 induced changes can significantly disorient the person with dementia. Caregivers need to minimize the person’s disorientation, distress and potential decline stemming from the changes due to the COVID 19 situation.
One obvious aspect is being forced to stay at home. Also, the person sees others using face coverings, repeatedly washing hands, wiping surfaces, etc. In many cases, family members who were away at work all day long are now at home instead. There is more activity in the house, more interaction, less privacy, and possibly more argument between family members. While in some homes the help has resumed work, in others helpers like maids, cooks, and dementia attendants may not be coming, so household chores and care work have to be handled by family members. Such changes can unsettle the person with dementia. They disrupt the daily routine and exercise and increase isolation. Adjusting to anything new is usually tough for someone with dementia, and with so many changes, the person may get agitated, withdraw, or show other changed behaviour.
During unlock, when things became apparently almost normal in many ways, the situation was confusing with mixed messages. Many people disregarded masks, or wore them on their chins as a formality. Workplaces that opened were not always strict about following defined protocols. Now, with COVID wave 2 in India, many local governments have re-imposed restrictions in varying degrees, persons are scared, and there is uncertainty as the pandemic shows no sign of getting over .
One important challenge is an increased chance of wandering. Wandering in the current COVID situation can be particularly dangerous. People may hesitate to approach or help a stranger who looks lost (due to social distancing). Finding and getting the person home safely is more challenging than per-COVID Also, the person who has wandered is unlikely to stick to COVID appropriate behavior and so there is an additional challenge that the person may have got infected by the time he/ she is located and brought home safely. If the person is in an area that is a containment zone or under lockdown, the person wandering may be seen as someone breaking the rules, and there may also be more difficulties getting together persons for a search party.
The fact is, with so many changes, disorientation is likely to be there and can result in changed behaviour. Families have to try to reduce it. They also need to ensure that any stay-at-home does not worsen mood, cause boredom, create social disconnect or cause physical or cognitive decline for the person with dementia. Here are some tips collated from multiple sources:
- Create a daily routine based on the old routine duly adjusted for the changed scenario. This helps because persons with dementia feel comfortable with routine and predictability. The new routine should be practical to follow day after day without adding to caregiver stress or resentment or fatigue. Switch to this new routine at a pace that suits everyone.
- Include suitable physical and cognitive activities. Look for things that provide engagement and relief to the person, reduce their restlessness and provide cognitive stimulation. Consider activities they enjoyed doing earlier, and which fit their current interest and cognitive ability. Select things that do not cause discomfort or irritation. Ensure caregiver effort required is doable. For example, if the caregivers have time and energy for it (and if the person is enjoys it) caregivers can encourage the person to tape or write or somehow document their old memories, recipes, etc. Or select some online exercise sessions where the person can “participate” along with those in the video. There are many simple movement/ exercise online programs like chair taichi, chair yoga, chair suryanamaskar etc designed for seniors, even seniors with cognitive impairment (there are many web resources and classes for this, choose one that suits). These may be from organizations working with seniors, or for persons with dementia, or conditions like Parkinson’s Disease. Check that these are safe and gentle enough before using them.
- Use available resources to keep persons entertained. This may keep the person engaged and happy without needing much effort from caregivers. For example, old, nostalgic TV reruns (some such serials are being aired in India). Or old movie clips and songs, bhajans, etc. See if you can put together some reminiscence therapy type of entertainment if you have the time. Choose what the person would enjoy. Avoid anything that can overexcite or agitate the person.
- Consider ways to include social engagement. As outside walks as well as visitors may not be possible in the COVID situation, use other ways to make the person feel socially connected, improve the mood and reduce isolation. Families are using platforms like Facetime, Zoom, Skype, Whatsapp, etc to stay connected with relatives and friends, and these can also provide connection for persons with dementia. Even simple, non technology-based actions help, like increasing the time the person sits in a balcony and watches the surroundings. Be careful when deciding what to resume as re-opening happens.
- Remain alert about wandering. All family members must be careful the person does not wander out or hurt themselves.
- Avoid overstimulation. Ensure that the person is not subjected to excessive or confusing input – like violent movies, or repeated loops of worrying news reports, or even hearing loud, animated conversations of work-from-home family members. This may need some adjustment of space and carefulness on the part of all family members.
A large part of the worry and challenge is related to medical aspects. Like, how to ensure medical support is available when needed, how to navigate the transport availability issues or restrictions on how many attendants can accompany a person. There is a lot of confusion on which medical facilities are avaialble and many anecdotes and reports of problems families have faced in gettiong required medical attention. Also, there is a great fear around any hospital trip, so one challenge is how to balance between need to visit a hospital for a health problem versus the potential of infection risk of such a trip.
Smooth handling for medical support needs correct information and enough planning and effort so that there is no bottleneck. But the situation and available capacity and facilities and the SOPs keep changing. Family caregivers therefore have to stay informed without getting swamped, overwhelmed and stressed.
Till the COVID wave 2 subsides, and till they are vaccinated, seniors with dementia should avoid any trip to a clinic/ hospital unless necessary, and use teleconsultation to get medical input.
Various aspects of medical support are discussed below. Note that in case someone with dementia is being taken outside home for some investigation or consultation etc, the person should be made to wear a mask, and due caution has to be taken to ensure they do not touch their eyes, nose and mouth , and that either frequent hand washing or hand sanitisers are used to keep the hand clean. This may need a lot of alertness and persuasion.
Getting medicines was particularly challenging during earlier days of the first lockdown, and while unlock or later lockdowns are more geared to ensuring medicines remain available, families need to stay alert on having enough quantities of critical medicines..
One problem noticed during the first round of lockdown was that not all families have recent prescriptions. In fact, they may not have any prescriptions for some medicines, especially alternate medicines or medicines that have been used for years. Many families are not in regular touch with doctors because they manage with old prescriptions and take the same medicines for years, and just “adjust” dosage at their own discretion. This may not be medically advisable, but is a reality nevertheless.
So, families need to ensure they locate (or get) prescriptions for their medicines (this may require telemedicine, see section below). Some hospitals have even started taking e-orders and providing home delivery for prescriptions they give based on telemedicine.
Services to get blood tests done from home are available,. See our city-wise pages for services that may be available in a particular city. If your locality has been declared a containment zone, there may be issues so you will need to find out what is allowed. Ensure any technician coming home follows safe processes. Use precautions like hand sanitisers, masks, etc, to stay safe and also keep the technician safe. Given the situation, consider deferring or combining tests to reduce possible exposure and inconvenience. Some investigations require a visit to a hospital/ facility. See section on hospital visits below.
It is best to discuss with the doctor which tests and investigations are required and which can be deferred. For doctor advice, see section on telemedicine below.
A doctor’s advice may be needed for various health issues – symptoms that could be dementia or other physical problems, handling comorbidities, mood problems, review of existing medication, getting new prescriptions, etc.
Most hospitals and polyclinics are running at reduced staff levels and have restricted OPD timings. Doctor availability for in-person physical consultation is not fully back to normal, and at many places doctors and staff may work on staggered timings. As SOPs for many medical services may include sanitization and fumigation, the time required for such steps also affects how many patients can be seen. This is especially so for health care services that require closer contact, like eye, dental, medical procedures, etc.
And as in the previous section, there are challenges planning any trip to a hospital. The Ministry of Health and Family Welfare, India recommends use of telemedicine for non-emergency situations, and has issued comprehensive guidelines for it. Telemedicine offerings have really grown after COVID started, but problems persist in interfaces and how satisfied families feel with the consultation. Doctors and hospitals, too, are still getting used to this modality of doctor-patient interactions. Here are some key points to remember, collated from experiences of families and doctors who have tried telemedicine:
- Note that telemedicine is a paid consultation and not a free helpline. Best get clarity on the terms and payment before the consultation. Some doctors may charge after the session sometimes instead of before.
- It is best to try for telemedicine consultation with the regular doctor who knows the patient rather than consult a new doctor. This is because:
- The old doctor may remember the patient and either be able to access the data or at least remember when given some details. For a new doctor, the family will need to give all the history and also decide what to prioritize. The family may not even have all the data, especially if the earlier doctor kept the case file with themselves.
- The old doctor is more likely to give suitable advice. A new doctor may hesitate or even refuse, and may keep saying things like it is your call or I cannot really say. If you are worried, please visit a hospital.
- The family needs to prepare for the teleconsultation by gathering the case history, recent prescription, test reports, their current problem and their questions. This step is good to do even if consulting your usual doctor, as the doctor may not remember the case, or may not have access to the case file. The more prepared the family is, the more likely they will get useful advice.
- One problem faced by families has been that while the appointment was given in a hurry, there was no way for them to send the reports to the doctor before they spoke to him/ her. Or that they sent the reports but the doctor had not received them. So a lot of time was spent reading out reports on phone, not a very effective way to do tings. Try to ensure this part goes through smoothly for you.
- Remember a doctor can refuse to give answers if they feel they don’t have the data they need or that a physical examination is required.
- Try for a video consult, as against audio or text only. (This is not always possible) A video consult may enable to doctor the recognize the family from earlier visits and also feel more comfortable about giving advice. If it is challenging to get the dementia person join a video call, you can share a picture of the person, or use video clips of the person with the doctor. Some doctors are open to getting Whataspp video forwards.
- The scope of a teleconsultation is limited. There are protocols on which medications can be prescribed through telemedicine, and these depend on whether this is a new case (new patient, or a new medical problem in an existing patient) or an old case (the patient was in touch with the doctor for the same condition recently).
- However, a doctor should be able to tell the family whether the situation is an emergency requiring a hospital visit.
- Ensure the prescription is in a format an online pharmacy will accept. This most probably means something with a clear letterhead and data on the doctor, patient name, date, clearly written name of medicine and its generic equivalent and its strength and dose.
Over time, as more people opt for telemedicine, more doctors will be used to it and trained for it. Some doctors still see teleconsultation as a “contact if problem” case rather than something to do overall follow-up up/ oversight, an important part of health care for geriatric populations. Ask around to see if you can find a doctor who is more comfortable with advising on teleconsultation.
A visit to a doctor/ hospital can be a tough decision in the times when people are scared that going to a hospital is itself a risk for infection. Many families report that they don’t want to visit a hospital in times like this. However, such visits cannot always be avoided, and sometimes should not be delayed either. Delays in some cases can worsen the situation.
- If there are symptoms that could be COVID 19, the family should not hesitate to contact the COVID helplines. The helpline will provide guidance on what needs to be done and how.
- If there is an accident or other medical emergency (like a cardiac event), such a trip is urgent and essential. And in such cases it is better to go to a hospital with all facilities.
- If there are ongoing procedures that are required (like dialysis, chemotherapy, etc), trips are required and should be coordinated as per the advised frequency and schedule.
- If there are important check-ups that need face-to-face consults and equipment only medical facilities have, use teleconsultations to decide when and how to to go for such visits.
A hospital trip can be tricky to handle. For example, for non-emergency trips, there may be restrictions on how many caregivers can accompany the person in the hospital . Depending on the COVID status of your geographical area, transport options may be limited (but increasingly, transport is no longer much of a challenge now). There is risk of exposure to infection during travel, and risk of infection at the hospital itself. A hospital trip may be required at short notice (one can’t predict an emergency). Some things that can make a hospital trip smoother are:
- Identify in advance which hospitals are more suitable (and which seem less risky) – both for COVID and non-COVID. It is best to know in advance which hospitals take which type of emergencies. If possible, call the hospital before going to avoid getting turned away.
- Know the helplines for COVID related problems, and for non-COVID support. These may be different. Also, relevant ambulance support or hospital transport options for COVID and non-COVID.
- Travel restrictions have been relaxed so long as SOPs are followed and there is no containment zone involved. But procedures for these keep changing. Stay informed and up-to-date regarding the SOPs and containment zones. The twitter and FB accounts of the municipal corporation and the police chief and commissioners are reliable sources for information. The websites of the state’s COVID cell also have the latest information. This sort of information search should not be left for an emergency situation.
- Stay prepared for an urgent visit to a hospital. Keep important medical data handy. Also, keep necessary phone numbers and supplies like hand sanitisers and masks readily available.
- Consider what sort of fallback support will be used to care for the person with dementia if the primary caregiver has a health setback.
All dementia organizations had suspended their physical, face-to-face programs for education and support when lockdown was imposed; many opened up later after implementing suitable SOPs. Some organizations provide equivalent support through online/ phone initiatives. For example, they hold online support meetings using Skype or Zoom or other platforms, and provide more information through phone. Some hold sessions for interactive exercises etc. But other organizations have not yet extended their work to online platforms. Some organizations offer online support, but mainly for families they were already supporting through in-person support. With wave 2, the situation may again change depending on the local administration’s regulations and the decisions of those offering the services.
If considering use of an in-person service, please ensure this is safe. For example, ensure that the travel to-fro and the actual facility is all safe . also satisfy yourself that any such service is following required and suitable standard operating procedures before letting the person with dementia use them.
One advantage of online/ phone support is that the support resource doesn’t have to be confined to a particular city. Families can search around wider for India-based entities. Even international online resources may be useful for some types of information, peer interactions, and support.
Briefly, type of support offered (not necessarily from India) are on platforms like Skype, Zoom, Cisco Webex, Facebook Live, Youtube Live, online forums, phone helplines, etc. Some webinars/ meetings focus on providing information (and allow typed questions). Others are interactive sessions like support meetings or interactive exercise programs. Some are public(anyone can join/ view) and the recording may even be available later. Others are private.
While using online options, families need to be careful about their privacy. They may not want their name associated with their questions – so for example, they may prefer a Zoom program where they can anonymize their name instead of querying on a Facebook Live session using their Facebook profile. In general, though, families can benefit from sessions where others are asking questions as often these questions cover many common concerns.
Families can identify online/ phone resources by contacting entities they were in touch with, or any other dementia organization (such as those on our city-wise pages) and asking for online offerings. A useful tip received from a reader: Elder Helplines may also be useful for families facing difficulties as these may be able to help, or may connect families with those who can. So you can also try the senior citizen helplines. Relevant support is also available through organizations working for seniors or supporting persons with Parkinson’s Disease or disability or mental health challenges, as there are significant overlaps in concern areas. So, if you can’t get “dementia” help, look at allied resources. Also, for helplines and some other resources, see the resources section below.
COVID changes have had a significant effect on the home environment. There is loss of privacy as many are “work-from-home” or working in staggered shifts. Some may be utterly bored and binge-watching Netflix, others may struggle to work from home or study. Household work and cooking load goes up as more people are at home, especially if the family has stopped using household help because of infection risk. are not coming. If trying to stay home to be safe, shopping needs more planning and effort. People may get on each other’s nerves. There have been reports of increase in domestic abuse due to this. While unlock eased this, with wave 2 here, problems may get worse again. In any case, part of the economic impact of COVID may continue for much longer and work from home is still a significant mode of work now.
Caring for someone with dementia in such an environment increases the challenge multi-fold. It would be nice if family members can discuss and arrive at a mutually workable way to share household and care work. The degree of comfort and familiarity of the person with dementia with the caregivers should be considered while deciding care responsibilities – the changes should not upset or disorient the person – so shifting all care to another family member may be impractical.
Most dementia care related suggestions focus on how to make life better for the person with dementia and sometimes include tips to reduce caregiving stress. For example, a presentation may list several activities to do with a person with dementia to ensure enough cognitive stimulation. In real life, families handle care work along with handling other life challenges. Also, the caregiver’s workload and tension may have gone up substantially in this COVID situation. Such an increase in care activities may cause excessive work, stress or guilt.
Here are some tips and suggestions for primary caregivers for retaining balance through such times. Oh, and please do not let these suggestions be a source of stress. Take it in small bites, and a day at a time. Caregivers should be gentle with themselves. That is far more important than trying to be a good or perfect caregiver. The more self-compassionate and realistic caregivers are, the less stressed they will be. That may create a much better home environment than doing everything “good”.
Pull in other family members to do some tasks. These may not be care tasks. If other tasks are taken off the primary caregiver’s task-load, the caregiver may be better able to handle care tasks.
Focus on essential tasks and objectives, and try to design tasks to meet multiple objectives at the same time. Look at all the work that is being done or needs to be done. See what is essential, what is desirable, and what is not really required. Focus on essentials. See if these can be handled so that they meet more than one function. Do this in ways that work for the caregiver and the person being cared for – there is no standard list.
But here is one example – the task of making the person with dementia wash her hands can become an occasion to chat and engage the person – maybe use a rhyme to count fingers and also lather the soap and joke about bubbles. This gets an essential task done while also providing some cognitive stimulation and fun.
Or while doing a mundane task like shelling peas, see if it can be done sitting with the person with dementia and maybe give her a few pods to peel. That makes it a time of interaction while also getting a required chore done. Use creativity for this, but remain safe.
Remember, the purpose is to reduce stress – if shelling peas with mom adds to stress, don’t do it this way. The selection of tasks has to be based on what works for the caregiver and the person being cared for, not what some book or presentation (or a page like this) considers good 🙂
Don’t increase the care workload unless very essential. When making changes, substitute existing tasks with others that are more suitable in these changed times. When it comes to care tasks or house work, there is always more that can be done. But as many have discovered, homes get by without all tasks being done perfectly. Choose a routine that doesn’t tire, or at least doesn’t tire too much. Opt for sustainable, not perfect.
When it comes to self-care, anything small the caregiver actually does is better than an ambitious, ideal self-care routine and that never gets done. Under existing constraints, caregivers may not get the self-care slots that were available earlier. Walks and runs may not be possible. Home may not be set up for Yoga or as a substitute for gym (though some gyms are opening now, the risk of using them may not be acceptable). Longer slots of “me-time” may be infeasible. Privacy may be an issue. A caregiver who used to journal said she doesn’t feel comfortable writing private thoughts in a crowded home environment. Another comment received was of people calling friends from the bathroom to avoid others overhearing.
Redesign self-care as a series of simple actions that are short and possible even if there is less privacy or space. Look for things that give some relief. Look for events that happen all the day long and which can serve as reminders to take a few moments of relief. Mentally connect the doable small actions to these reminders, so that these simple self-care acts are sprinkled through the day.
Here is an example: Every time when walking through a door, take three deep breaths or just watch the next three breaths. Or every hour, when the clock strokes 12 (phone alarms can be used as reminders), listen to a song on headphones. Change the ring tone that brings a smile to the face or feels peaceful. Some thought will help identify many small doable actions that don’t require taking visible time out or needing privacy
Also, stay connected with friends. Maybe rotate calling through a list of contacts so as to touch base with a few friends every day.
Stay informed but not overwhelmed. COVID 19, lockdown, unlock, conflicting political views and options, projections etc are a major thing in media nowadays. Obsessive reading of reports can suck the reader into fear, frustration and helplessness, and increase the stress. Best stick to authoritative sources like the Ministry of Health and Family Welfare and the state administration and state police sites. Many find it helpful to fix time slots for checking information and news sites, and only look for useful information. Caregivers are already busy and stressed – if there is more time, use it to relax or do something creative and empowering instead of getting pulled into repetitive, depressing news.
If the person with dementia is not living with the caregiver, the caregiver role is that of a remote coordinator. This situation is particularly challenging as care depends on other people and systems for actual tasks and the remote caregivers cannot reach the person with dementia. Travel has opened up somewhat, but some states have some restrictions and some countries may not allow travel to or from India. This sort of situation keeps changing based on assessments of infection risk. Also, , but actual availability of transport is lower, and much confusion exists on what sort of tests and quarantine may be required. Also, even if a remote caregiver manages to reach the location, that may not help if they are placed in home quarantine instead of of being able to do the helping and running around needed. Plus, there is a risk of infecting the person with dementia,
For remote care: If the home of the person with dementia is not suitably set up, there may also be no video contact like Skype to see what is happening. This is typically the case with adult children who have parents living alone (either an elderly couple or just one parent with mild cognitive problems) in another city or locality.
In such a situation, remote caregivers need to be much better connected and informed and have to take a very active role. Some families are also arranging to move the parents in with them (the travel coordination is tough but has been managed with effort and planning) – but overall, remote care remains a far more difficult situation to manage care in.
In this COVID scenario, the changed ways of working and constraints, and with the risk seniors face being high, care management depends a lot on ability to use technology and to network. Many caregivers are seniors themselves, often with comorbidities and health challenges. Even simple tasks like vegetable shopping become time consuming acts.
Caregivers uncomfortable with technology, reclusive by nature, or generally unwilling to ask for help may be more overwhelmed. But COVID has made many of them venture into technology and many have found that using technology or reaching out was not difficult once they overcame their initial hesitation. Neighbours can help (if asked), or friends (and their children) can show them easier ways to find what is available. Many organizations are offering courses for seniors to help them get better at using techniology, and also teach other subject and conduct hobby classes, and organizations working with seniors also help get a task done. There are forums where people post requests for specific help.
No one is certain how long the COVID 19 risk and related preventive measures will continue or how these will change over time. But with some effort, caregivers can build an information base and skills to handle it better and also find ways to tap others for help selectively when needed.
Those trying to help families can use the above discussion to identify areas to help. Some suggestions are also listed below:
- Available helplines and other online resources should be publicized and be visible to those who need help.
- Support can be through relevant information, online support groups, phone counselling to stressed caregivers, online forums for caregivers and for person with dementia, database of reliable doctors who offer telemedicine, etc. Support should be available for any family that needs help (not just the organization’s existing mailing list).Support should be in multiple languages for multiple profiles of caregivers (not just English speaking upper-middle-class urban families).
- Families also need support to know the procedures required for getting medical help, and get help with them.
- One useful database to create is a pool of doctors and other healthcare professionals who can make home visits when really required. Or doctors who handle telemedicine for new cases.
- Another area is empowering caregivers through training to use online resources.
- Outreach modalities that don’t require sophisticated Internet connections or online expertise can also be used, like radio programs.
- Those in advocacy can work to ensure that the impact of COVID 19 measures on persons with dementia and their carers is not forgotten.
This section includes some resources particularly useful for dementia home caregivers in India. Many organizations have put up resources, webinars, etc related to COVID, and given this flood of information, it is difficult to locate what may be reliable and helpful. The selection below is curated for caregivers.
Resources to get latest COVID related information, guidelines, and lockdown and unlock processes in India.
The latest order related to effective control of COVID-19 in can be seen at Order from Ministry of Home Affairs, India Opens in new window and an advisory with containment framework is here Opens in new window. State and union territories decide, based on their assessment of their situation, what the rules and restrictions will be for various geographical locations/ containment zones/ micro-containment zones – these are available on the local state/ district/ city sites.
Authoritative site for COVID 19 in India: site of Ministry of Health and Family Welfare, India Opens in new window. Overall guidelines and protocols are available here. Each state has its own site and dashboard also Opens in new window, and there are also Facebook and Twitter handles for the municipal bodies and police. These give current data on cases, rules, containment zones, etc, and also enable individuals to reach out to the administration and get responses.
The helplines are:
- General (non-COVID) helpline: Pan-India single emergency helpline number ‘112’ for all needs – this will direct to the appropriate agency like police (100), fire (101), health (108) and women (1090).
- COVID helpline: All-India: 91-11-23978046, email@example.comToll Free : 1075. For state-wise helplines, see State-wise COVID helplines Opens in new window.
- The psychosocial toll-free helpline from the Ministry of Health is at 08046110007.
A useful resource is the iCall Psychosocial helpline for free professional counselling – 91529 87821, Special COVID line – 9152987820 (Mon-Sat/ 10-6 pm), email firstname.lastname@example.org, and nULTA app (chat), Monday to Saturday 10 am to 8 pm.
Some discussions and experience sharing focused on dementia and COVID
To read what other caregivers experience, and any problems and suggestions, a good resource is online forums. One forum with a special section on COVID related experiences is UK based Talking Point UK’s forum section on COVID Opens in new window – while many posts may be irrelevant for families in India, but some readers want to see it. It also includes a section, Coronavirus: Information for people affected by dementia Opens in new window
One video that explains how one of the largest care homes in India has taken steps to keep its residents safe (recorded in Sep 2020) can be see here and will give some idea of aspects to consider when evaluating a care home during COVID times (relevant speaker introduction and talk start at 34 seconds): Prem kumar Raja on COVID management in Institutional settings.
Some India-based material:
- Advice on mental health and COVID is available from NIMHANS (includes a few points on dementia): Mental Health in the times of COVID-19 Pandemic Opens in new window.
- An article at WhiteSwan discusses dementia care in COVID times (some points relevant for home care): Caring for the elderly with dementia, during the COVID-19 pandemic Opens in new window.
- Recommended: The iCall Psychosocial Helpline section COVID 19 Opens in new window containing topics like care for the carer, well being during COVID, creating personal space, dealing with loneliness, handling overwhelming thoughts, etc.
Resources related to the vaccination process
The authoritative site for registering for vaccination and knowing related processes etc (all vaccination needs registration) is www.cowin.gov.in Opens in new window In addition to registration, this includes information on where vaccination is available, and the process etc. Note that the process is being adjusted as the ground realities change, so while experiences of friends and others is helpful, you still need to make sure you check this for updated information. Alternate place to register is www.aarogyasetu.gov.in Opens in new window
A useful article addressing many concerns of persons with various comorbidities who are considering vaccination is available here: COVID 19 Vaccines: FAQ for people with co-morbidities Opens in new window
A useful set of tips for the registration and getting the vaccination is available in this blog post: Tips for Senior Citizens for Taking Covid Vaccine Opens in new window
Resources for handling problems caused by constraints in movement (medical and services, remote family support, travel restrictions and logistics challenges)
Many volunteers are acting as “corona warriors”, both in small circles (like within an apartment complex) or in across city situations. One very prominent example of such a group is HumanKind Global (prev. Caremongers India), which is present on platforms like Facebook Opens in new window and has very active participation of persons willing to help/ suggest resources and contacts.
Resources on handling various medical situations from home during COVID
Many patient-oriented and care-oriented organizations have been conducting webinars to discuss challenges on platforms like Zoom, Cisco Webex, Facebook Live, Youtube Live etc. Recordings are usually made available online later.
Several useful webinars for multiple comorbidities that may be of concern are available from PatientsEngage.com and can be seen on their website Opens in new window, their Facebook page Opens in new window, Youtube channel; and other social media presence.
Some geriatric issues and dementia issues are also addressed in webinars organized by Samvedna Senior Care Opens in new window.
Some webinars around stress management at times like this are available from multiple sources, such as White Swan.
(Suggestions for additional resources of this page can be sent to email@example.com)
The discussion of dementia care during COVID 19 is also available as a 4-part series in Hindi.
- डिमेंशिया देखभाल और कोविड 19 (COVID 19) (भाग 1): व्यक्ति को वायरस से बचाएं Opens in new window.
- डिमेंशिया देखभाल और कोविड 19 (COVID 19) (भाग 2): देखभाल कैसे एडजस्ट करें Opens in new window.
- डिमेंशिया देखभाल और कोविड 19 (COVID 19) (भाग 3): दवा खरीदना, टेस्ट करवाना, टेलीमेडिसिन से सलाह लेना, अस्पताल जाना Opens in new window.
- डिमेंशिया देखभाल और कोविड-19 (COVID 19) (भाग 4): कारगर देखभाल और तनाव मुक्ति के लिए अन्य सुझाव, सहायता के लिए संसाधन, इत्यादि Opens in new window.