Dementia Home Care, the COVID-19 infection risk, and Lockdown/ Unlock challenges

The COVID 19 pandemic has made taking care of someone with dementia at home even more challenging. In addition to trying to ensure the person does not get infected, family caregivers have to help the person adjust to the lockdown constraints (and any unlock relaxations) and their impact on the daily routine. Also, families face multiple practical problems handling household chores and work. This work, stress, uncertainty and fear make things worse.

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 them. 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/ unlock implications. Though there are no easy answers for the multiple problems being faced, a shared awareness of problems and some related information and tips are provided as a starting point for families looking for a way forward. The page has been updated for the order dated May 30, 2020 which identifies steps towards a phased re-opening (Unlock 1) (ref: Order from Ministry of Home Affairs, India Opens in new window ). Any feedback/ suggestions for content or resources of this page can be sent to dementiacarenotes@gmail.com

On this page:

Note that lockdown, first imposed on March 25, 2020, has been subsequently revised and relaxed with relaxation being done selectively in geographical areas based on their COVID status as per the decision of the local administration. Handling day-to-day work and access to support within the framework of what is permitted requires staying updated on the local administration’s classification of where a family stays and where they may be trying to go and for what purpose, so keep informed through authoritative municipal and police sites. As per the order of May 30, 2020, phased re-opening (Unlock I) has been announced. However, the need to protect vulnerable persons and take all required precautions remain. Also, any re-opening can only be done as per the issued SOPs (standard operating procedures) only. (ref: Order from Ministry of Home Affairs, India Opens in new window )

Protect dementia persons from COVID 19 infection

Clearly, this is a priority as COVID 19 infections have more serious implications for seniors, especially seniors with comorbidities, and persons with dementia typically fall in this category. Also, if infected and needing treatment, persons with dementia would face more problems as they typically get more disoriented in hospital settings, may not understand enough about COVID or the required precautions etc, and may not be able to communicate their needs or problems.

The Ministry of Social Justice and Empowerment, Government of India, has 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 while attending on the senior, wipe surfaces that were used frequently, ensure the senior is assisted properly and also ensure proper nutrition and hydration. It also emphasizes that carers who are suffering from any symptoms should not go near seniors. Read the full advisory here.

Additionally, note that lockdown relaxation/ unlock should not mean relaxation of actions taken to keep seniors at home safe from the infection. The order dated May 30, 2020, advises: “Persons above 65 years of age, persons with co-morbidities, pregnant women, and children below the age of 10 years are advised to stay at home, except for essential and health purposes.” Also, note that the risk of exposure to carriers of COVID is higher as more family members go out, and as outsiders like maids, delivery and repair men, and other outsiders come home. 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.

A stay-at-home person with dementia whose family members follow the recommended practices to stay safe from infections as well as take precautions when interacting with the person is better protected from infection. Also, there are various suggested ways to improve immunity, such as the recommendations of the Ayush Ministry Opens in new window.

There are some additional challenges while protecting persons with dementia from COVID:

  • 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. How to make the person with dementia comfortable with this is a topic where caregivers are still looking for creative solutions.
  • 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. Suggestions in this area will be added as and when more feedback is received.

Note that there are situations where a person with dementia may not remain at home, such as if living alone and needing to go out shopping 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 try and protect the person while also performing all required care and reducing/ removing the person’s agitation with the changes required. Families across the world are facing this problem and trying to figure out what works in their case, and what doesn’t. 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.

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Minimize the person’s disorientation and disruption

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. 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. On the other hand, helpers like maids, cooks, and dementia attendants may not be able to come, 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.

Even as re-opening starts, the changes to now adjust to this re-opening is a disruption and requires adjustment. The frequent changes and uncertainty as people adapt to the latest guidelines and rules creates a situation where families need to keep adapting their approach.

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). Families may find it difficult to launch a large search (and arrange passes for volunteers to drive around). The wandering person may be questioned by the police who assume he/ she is out of the home with no valid reason. In mid-April (India), one senior was stopped as he was driving around. When questioned, he did not seem to know about either lockdown or passes. His manner, language, and type of responses led to a case being filed against him. While medical explanations are being used to resolve it, the incident highlights the challenge of making someone with dementia conform to the various restrictions.

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. Be careful to 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 (links in reference section below). 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 e 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 lockdown relaxation starts and 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.

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Ensure continued medical support

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 lockdown constraints/ restrictions, handle issue of passes and arranging transport, how to handle an emergency. 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 what is possible and permitted keeps changing. Family caregivers therefore have to stay informed without getting swamped, overwhelmed and stressed.

The risk of seniors going out is recognized in various lockdown circulars and those above 65 are advised not to go out except for essential tasks and medical reasons. Even with relaxation in lockdown, 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 and medical supplies

Getting medicines was particularly challenging during earlier days of strict lockdown, but these problems have eased over time. Except for some categories/ some specific medicines, availability is not a problem now

One problem that got highlighted during 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). . If using home delivery, note that home deliveries nowadays is “contact-free” but if not, use of face-mask and sanitizer and such precautions is necessary. Also, different people use different methods to ensure packets they get are not infectious, and guidelines/ articles on these are confusing. But please remember that most medicines are not supposed to be put in direct sunlight for hours- that may kill the virus (perhaps) but it may also make the medicine ineffective!!

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Getting tests and investigations done

Services to get blood tests done from home are available, but may involve wait time of days. See our city-wise pages for services that may be available in a particular city. . You can also check with neighbours to find who is dependable for the residential area. If in an apartment complex, ensure the technician coming for sample collection will be allowed in. 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)

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Getting medical advice using telemedicine

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 low staff levels and have restricted OPD timings. Doctor availability for in-person physical consultation is low. (This may change as re-opening happens) 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. More and more telemedicine offerings can be seen. In practice, however, people are unclear how to use telemedicine effectively. 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.
  • 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 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. Currently, most doctors are not used to telemedcine even if they are very good for in-person consultations, but this will change with experience. Also, more feedback will be available on which doctors are good at it and families will also get better at explaining things and asking questions.

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Visiting a doctor/ hospital (emergency, necessary medical procedures, important check-ups)

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 do 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, both for issue of passes and for companions the hospital will allow inside. Transport is another challenge — cabs, autos, public transport are unavailable, and not everyone has private vehicles, or their drivers are not available. Passes may be needed. 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”) Some hospitals are now designated as COVID-only and a few reports claimed that some hospitals refused to take normal emergency. While it is unclear whether this was a misunderstanding/ misinterpretation of rules or whether it was a requirement, it is best to know in advance which hospitals take normal 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, ambulance support or hospital transport options may be different for COVID and non-COVID. Some “emergency” cab services are available which operate only between hospitals and homes. So are ambulances and the police help service. Stay informed about these travel options.
  • Passes are required to move without getting stopped in lockdown times. The procedures for these keep changing. Stay informed and up-to-date regarding this. 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.

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Look for available dementia care support

All dementia organizations have suspended their physical, face-to-face programs for education and support due to lockdown (they may resume small parts of it as lockdown relaxes). Some organizations now provide equivalent support through online/ phone initiatives. For example, they now 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.

If considering use of an in-person service (possible as lockdown relaxes) please ensure this is safe. For example, please ensure that the travel to-fro and the actual facility is all safe – the Govt is issuing various SOPs (standard operating procedures) that any such re-opened place is supposed to follow so please satisfy yourself about it before letting the person with dementia use them.

One advantage of online/ phone support is that the support resource doesn’t need to be confined to a particular city. Families can search around wider for India-based entities that can help. Even international online interventions may be usable 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 if you can’t get help elsewhere.

Below, in the resources sections, some helplines are included. Suggestions will be added here for dementia support entities offering online support relevant for COVID times. Entities can also add their data as comments below. The intention is to list those providing ongoing support to families outside their existing mailing lists.

Note that even if not designed for dementia persons, 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. If there are any crowdsourced or other reliable listings for these, please add these in comments below.

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Overall, opt for a sustainable approach

Lockdown has a significant effect on the home environment. There is loss of privacy as everyone is at home. 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 maids and cooks are not coming. Shopping needs much 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 lockdown relaxation(like Unlock I) may ease some of this, part of the impact of lockdown may continue (like pay cuts, lost jobs, etc) and work from home is also still a preferred practice as per the Ministry of Home Affairs orders. Need to ensurev social distancing etc may make employers stagger working hours or days so that the SOPs can be followed, and this may bring its own chalenges for families.

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. 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. On one hand, there is need to stay informed, but on the other, 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.

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Find special ways for remote support

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. 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 will need to be much better connected and informed and have to take a very active role. While easing of lockdown constraints may allow adjustments to handle remote care more easily, and some families are also arranging to move the parents in with them (subject to travel arrangements), remote care remains a far more difficult situation to manage care in.

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Additional tips for family caregivers

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. They will be heartened to know that others like them 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. Organizations working with seniors can help get a task done, or teach them required skills. Corona warriors can be approached. There are forums where people post requests for specific help.

In general, being dependent and helpless can be very demoralizing. Being confined can be difficult to handle. No one is certain how long the restrictions and challenges posed by COVID-19 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.

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What others can do to help

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.

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Collated Resources

(suggestions welcome!!)

This section includes some resources particularly useful for dementia home caregivers in India. While some are international resources, caregivers may notice a few ideas that can help them (but reaching these gems may take some patience). Best of luck!

Resources to get latest COVID related information, guidelines, and lockdown processes in India.

The order dated May 30, 2020 details the lockdown extension in containment zones and phased re-opening in others,: Order from Ministry of Home Affairs, India Opens in new window. How it applies to various geographical locations depends on how local administrations classify the type of zones and containment areas, and will be 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, and there are also Facebook and Twitter handles for the municipal bodies and police. These give current lockdown related boundaries, procedures for passes, 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, Toll 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 very useful resource is the iCall Psychosocial helpline , which offers free professional counselling, and can be accessed using 93702 48501, 99202 41248, 83697 99513 or 91529 87821, email icall@tiss.edu, and nULTA app (chat), Monday to Saturday 10 am to 8 pm.

Some discussions and experience sharing focused on dementia and COVID

The challenges and some solutions as discussed by dementia organizations from several countries; the content is most relevant for volunteers working in dementia, but can give some insight to caregivers also. Of particular interest is a presentation Supporting persons with dementia during COVID-19: Experiences and advice from around the world Opens in new window This 90-minute ADI video uploaded by Alzheimer’s Disease International has panellists from around the world share their experiences and tips.

Some India-based material:

Forums

To read what other caregivers experience, and any problems and suggestions, look at online forums.

One example of a forum with a special section on COVID related experiences is Talking Point UK’s forum section on COVID Opens in new window – This is UK based, and much of it may be irrelevant for families in India, but the resource is included in case some readers want to see it. It also includes a section, Coronavirus: Information for people affected by dementia Opens in new window

Resources for engaging seniors with dementia

Stay Home Workout Opens in new window from Alzheimer’s Disease Association, Singapore.

Contact Parkinson’s Disease and Movement Disorder Society, India Opens in new window for their exercise programs.

Resources for handling problems caused by lockdown (important purchases, medical supply type situations, remote family support)

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 CareMongers India, which is present on multiple platforms like Facebook Opens in new window and has very active participation of persons willing to help.

Resources on handling various medical situations from home during lockdown

Many patient-oriented and care-oriented organizations are offering webinars to discuss challenges and allow questions to be asked. They also make the recording available later. These are often on platforms like Zoom, Cisco Webex, Facebook Live, Youtube Live etc.

One such series of useful webinars for multiple comorbidities that may be of concern come from PatientsEngage.com and can be seen on their website Opens in new window, their Facebook page Opens in new window, 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.

Stress management

A short 1:20 minute video with some simple stress relievers is available from the Ministry of Health and Family Welfare: Video on Yoga for stress management Opens in new window.

Some webinars around stress management at times like this are available from multiple sources, such as White Swan.

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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
  • डिमेंशिया देखभाल और कोविड-19 (COVID-19) (भाग 2): देखभाल कैसे एडजस्ट करें
  • डिमेंशिया देखभाल और कोविड-19 (COVID-19) (भाग 3): दवा खरीदना, टेस्ट करवाना, टेलीमेडिसिन से सलाह लेना, अस्पताल जाना
  • डिमेंशिया देखभाल और कोविड-19 (COVID-19) (भाग 4): कारगर देखभाल और तनाव मुक्ति के लिए अन्य सुझाव, सहायता के लिए संसाधन, इत्यादि
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    Page/ post last updated on: May 31, 2020

    4 thoughts on “Dementia Home Care, the COVID-19 infection risk, and Lockdown/ Unlock challenges”

    1. Highly appreciate your efforts and valuable information for this article highlighting Dementia care during Covid-19. Reading through this article I could imagine how helpful this is for family caregivers providing at-home dementia care, especially the explanations and details that you have got here. This is a one-stop resource for dementia caregivers in India!

    2. Thank you for all this information. I am in the USA but it is still relevant and helpful. My 70 year old mother (amputee/ stroke injury/ early dementia) had an emergency bypass on her leg and was in the hospital for two weeks. The staff did a very good job of protecting her from Covid 19 while she was there. But because of the outbreak they couldn’t find a nursing home for her to recuperate in and now she is home. I just woke up and i am in so much pain..my back, shoulders and legs hurt so bad from lifting her everyday. All i can do is lay here..trying to figure out how to get help. You see my mother is very combative and non compliant. The attendant I had quit after one week and the agency cannot find another person. In the past i have gone through 20 caregivers in one year. She yells and screams and argues..even at the hospital she refused three nurses and medicine! I have reached out to her Dr and Psychiatrist but they are not helping me. I do not think they realize that if i can’t get her to calm down , I can’t utilize help and am left being the only one to take care of her. I know you understand because I read your blog about taking care of your mom when she was bedridden. That is very similar to what I experience on a day to day. The social worker told me to call APS. Which is the state to take over her rights and force her in a nursing home. I just can’t do that.. but i am the only daughter and her family has ignored my letters and phone calls for help. So i guess she was just trying to help. I would love some suggestions if you don’t mind. Thank You!

      1. So sorry to hear this. Practical tips to handle such challenging situations are very context dependent so I suggest you share your situation on an online support group to see how others are coping with it in an environment similar to yours, as the comments and suggestions there would be most appropriate. A few such forums are listed at https://dementiacarenotes.in/resources/other/#intlforums Hope they help.

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