The COVID 19 pandemic has made home care of someone with dementia more challenging. This page was first published in April 2020, and has been regularly updated to reflect the changing scenario. The COVID pandemic resulted in major changes in home and work environment and availability of services. We must remember, though, that such serious infections affect seniors more, especially those with dementia, and families have to continue to protect the person from infections, help persons adjust to changed situations, create suitable daily routines, and get required medical support. In addition to the discussion below, other pages on this site have been updated to reflect the tips learnt from the pandemic as relevant.
Lockdown was first imposed on March 25, 2020. It was subsequently revised and relaxed selectively in geographical areas and as the COVID situation kept changing, the authorities kept issuing advisories and mandates. The ongoing fine-tuning has affected transport and travel, requirements related to tests/ home isolation/ quarantine, SOPs related to work, travelling, gatherings, etc. Fortunately, with large sections of the population vaccinated, the situation seems to be under better control. But it continues to remain very important for families to stay safe from COVID and keep the person with dementia safe, adjust care modalities suitably, and to stay informed. Vaccination (including boosters) should be considered for persons with dementia and for anyone they are exposed to (who may infect them).
This page is a resource for families in India supporting home care for someone with dementia in these COVID times. It is also relevant for people supporting such families. Many aspects of this may also be useful for any senior or other at-risk person, and may remain relevant even in the “new normal”. 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.
On this page:
- Protect dementia persons from COVID 19 infection (includes vaccination) .
- Minimize the person’s disorientation and disruption.
- Ensure continued medical support.
- Look for available dementia care support.
- Overall, opt for a sustainable approach.
- Find special ways for remote support.
- Additional tips for family caregivers.
- What others can do to help.
- Collated Resources.
Protect dementia persons from COVID 19 infection (includes vaccination).
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 enough 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 which recommended, among other things, that seniors should stay at home, avoid visitors, follow various good hygiene practices, and take care of their health. COVID-appropriate behaviours were included. It emphasized that to protect the person from infection, family members need to stay safe from infections as well as take precautions when interacting with the person.
As activities have resumed on many fronts, the risk of exposure to carriers of COVID is high. Many infected persons are asymptomatic, so 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. Families need to get the persons with dementia, all family members and caregivers vaccinated (and get the booster dose) as per the advised frequency, subject to any other medical advice and arranging logistics. The authoritative site for registering for vaccination and knowing related processes is www.cowin.gov.in Opens in new window. Alternate place to register is www.aarogyasetu.gov.in Opens in new window. Walk-in vaccination is usually an option subject to some conditions. Also, vaccination camps are often organized by the local health authorities and hospitals.
- Please consult your doctor for any doubts around vaccination, especially if there are other medical conditions. 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 discussed in : COVID 19 Vaccines: FAQ for people with co-morbidities 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).
- For the actual trip, take along any necessary papers/ medical records/ prescriptions, and also things like water, snacks, hand sanitizer, extra masks, etc., as seems necessary.
- 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 that some family member stays with the person so that the person does not get disoriented, confused or agitated.
- Be ready for more care for the person with dementia after the vaccination as there may be minor side-effects which 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 or soreness) 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 gets some side effects after vaccination.
- Remember that 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.
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 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 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. If explanations are required, they need to be simple, repeated often, and supplemented with pictures and 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 persons with dementia while at home: 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). Any attendant or other help the person with dementia may be exposed to should also not be infected. Stay alert to detect any sign that the person is infected.
In some situations 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.
Forums can be useful to read shared tips and experiences about care situations.
Minimize the person’s disorientation and disruption.
Changes made in the environment and way of living and working due to COVID 19 can significantly disorient the person with dementia. There is 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 some homes have resumed use of household help (like maids, cooks, drivers), in others the household chores and care work may 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.
Wandering in the COVID situation can be a problem. As the person with dementia who wanders is unlikely to stick to COVID appropriate behavior, there is an additional challenge that the person may get infected by the time he/ she is located and brought home safely.
With so many changes around them, the person is likely to be disoriented and show changed behaviour. Families have to try to reduce it. They also need to ensure that the increased 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:
Ensure there is a daily routine based on the old routine duly adjusted for any changes in the 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 increasing caregiver stress or resentment or fatigue. Ensure this new routine is practical for the caregiver and addresses multiple aspects like the physical, emotional and social wellbeing of the person. If confined to home, look for suitable online alternatives, which may be possible even for exercise and community. Many organizations working with seniors, or for persons with dementia, or conditions like Parkinson’s Disease, offer these now. Use platforms like Zoom, Skype, Facetime etc to enable the person to stay connected to friends, family, etc. Even simple, non technology-based actions help, like increasing the time the person sits in a balcony and watches the surroundings. Look creatively for easily available resources that can keep the person engaged and happy. Switch to this new routine at a pace that suits everyone.
If there is a lot of activity at home now, and more people are staying at home, be careful to avoid overstimulation. Avoid subjecting the person to excessive or confusing input – like worrying news reports, loud, animated conversations of work-from-home family members, and so on. For this, all family members may need to remain careful.
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 transport availability issues or restrictions on how many attendants can accompany a person in transport or in a clinic or a doctor’s room. There is confusion on which medical facilities are available for what type of medical attention. Also, there is still apprehension around hospital trips, so one challenge is how to balance between need to visit a hospital versus the potential of infection risk of such a trip.
Family caregivers have to stay informed about any related processes and availability of healthcare resources without getting overwhelmed and stressed.
Till the COVID situation subsides, and till they are vaccinated, seniors with dementia should avoid unnecessary trips to clinics/ hospitals. Fortunately, telemedicine is now available at many places.
For actual visits, even if the person is vaccinated, all precautions must be followed. 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 hands clean. This may need a lot of alertness and persuasion.
Medicines and medical supplies.
Getting medicines was particularly challenging during earlier days of the first lockdown, and while things are more or less normal now, families need to stay alert on having enough quantities of critical medicines. They need to have a list of suppliers who can do home delivery for required medicines etc. Many vendors, and even some hospitals now do home-delivery if their process is followed, and the e-prescriptions issued during teleconsultations are accepted.
As many families learned in the initial lockdown stage, it is important to always have recent prescriptions for all medicines, including alternate medicines. They need to stay in regular touch with doctors and ensure their prescriptions reflect the correct medicines and dosage.
Tests and investigations.
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. Be alert if you live in a “containment zone” – but usually, medical technicians are allowed in. Ensure any technician coming home follows safe processes like using masks, sanitizer, gloves etc. Some investigations require a visit to a hospital/ facility; consider deferring or combining tests to reduce possible exposure and inconvenience. Discuss with the doctor which tests and investigations are required and which can be deferred. For doctor advice, see section on telemedicine below.
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 working, but staff levels may be lower and OPD timings restricted. Doctor availability for in-person physical consultation is not fully back to pre-COVID levels, and there may be staggered timings. As SOPs for many medical services include sanitization and fumigation, the time required for such steps reduces the number of patients who can be advised. This is especially so for health care services that require closer contact, like eye, dental, medical procedures, use of special equipment, etc.
The Ministry of Health and Family Welfare, India, has issued comprehensive guidelines for telemedicine and such offerings have grown after the first lockdown. Now, many places have both options, in-person consultation (following precautions) and telemedicine. Note that telemedicine is not for emergencies. While many families are, by now, familiar with telemedicine, some tips below may still help.
- 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 it is that they will get useful advice.
- Try to ensure that you are able to send across any required reports before the teleconsultation appointment time.
- 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 Whatsapp 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.
Visiting a doctor/ hospital (emergency, necessary medical procedures, important check-ups).
A visit to a doctor/ hospital can be a tough decision if people consider going to a hospital itself as a risk for infection. 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, please contact your doctor or the COVID helplines for guidance. Many labs now also do home collection to test for COVID.
- If there is an accident or other medical emergency (like a cardiac event), don’t hesitate to go to a suitable hospital that has the required facilities.
- Trips for required ongoing procedures (like dialysis, chemotherapy, etc.) should be coordinated as per the advised frequency and schedule.
- Ask your doctor (you can use telemedicine for asking) how to handle important check-ups that need face-to-face consults and equipment that only medical facilities have.
A hospital trip can be tricky to handle. For example, there may be restrictions on how many caregivers can accompany the person in the hospital or in the doctor’s room. While transport is no longer a challenge now, it may still require planning and care. There is risk of exposure to infection during travel, and at the hospital itself. A hospital trip may be required at short notice; one can’t predict an emergency. Here are some things to make a hospital trip smoother:
- Identify in advance which hospitals are more suitable (and which seem less risky) – both for COVID and non-COVID, for emergency and non-emergency. If possible, call the hospital before going.
- Know the doctors and helplines to contact for COVID and non-COVID support. 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 still keep changing. Stay informed 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.
Look for available dementia care support.
Most dementia organizations have resumed their physical, face-to-face programs for education and support after implementing suitable SOPs. Many now also provide support through online and phone initiatives, like online support meetings and online interactive exercises etc. Some organizations offer online support to anyone, others only to families they were already supporting through in-person support. The situation may change.
If considering using an in-person service, please ensure this is safe. For example, ensure that the travel to-and-fro and the actual facility is safe. Also, satisfy yourself that any such service follows required and suitable standard operating procedures before letting the person with dementia use them.
One advantage of online and phone support is that families are not confined to a particular city. They can access other 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, and many others. Some webinars and meetings focus on providing information (and may allow typed questions). Others are interactive sessions like support meetings or interactive exercise programs. Some are public, where anyone can join or view, and the recording may even be available later. Others are private. Most require registering where you have to provide some personal data.
While using online options, families need to be careful about 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.
Overall, opt for a sustainable approach.
COVID changes have had a significant effect on the home environment. “Work-from-home”, which was adopted in a big way when lockdown started, is still being used by many organizations where this is feasible, for at least a few days a week. This impacts the home environment. There is loss of privacy as many are “work-from-home” or working in staggered shifts. Household work and cooking load goes up as more people are at home. People may get on each other’s nerves. There have been reports of increase in domestic abuse due to this. Note that part of the economic impact of COVID may continue for much longer and work from home may remain a significant mode of work.
Challenges of dementia care in such an environment increase multi-fold. Mostly, by now, families have established 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 (like listing several cognitive stimulation activities) and sometimes include tips to reduce caregiving stress. In real life, families handle care work along with handling other life challenges. Also, the caregiver’s workload and tension may have increased due to all the changes COVID has caused, and there may be 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 considered 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. Determine 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 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! Select tasks 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 for 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 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 remind you 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 strikes 12 (phone alarms can be used as reminders), listen to a song on headphones. Change to a 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 and don’t need 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. Doom-scrolling through news on COVID 19 variants and waves, conflicting political views and options, doomsday projections etc. adds to stress. Obsessive reading of reports can suck the reader into fear, frustration and helplessness, and increase stress. For COVID at least, 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. If there is spare time, use it to relax or do something creative and empowering instead of getting pulled into repetitive, depressing news.
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. Care depends on other people and systems for actual tasks and the remote caregivers cannot reach the person with dementia easily. Travel has opened up but there still may be challenges, especially in international travel. Travel between countries can be tricky if there are multiple requirements of certificates, tests, quarantine etc. and reduced visa services. Even if a remote caregiver reaches the place where the person with dementia is, that may not help if they are placed in home quarantine. Plus, there is a risk of infecting the person with dementia.
For remote care:
- Ensure the home of the person with dementia is set up for video contact (like Skype) so that adult children who have parents living alone (either an elderly couple or just one parent with mild cognitive problems) can see what is happening.
- Stay better connected with people who may help if there is a care challenge, and informed and take a very active role in monitoring and intervening as appropriate.
- Some families arrange to move the parents in with them . This travel coordination requires with effort and planning.
Overall, remote care remains a far more difficult situation to manage care in.
Additional tips for family caregivers.
In this COVID scenario, with 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 seniors venture into technology and many have found that using technology or reaching out was not difficult once they overcame their initial hesitation. Also, neighbours can help (if asked), or friends (and their children) can show them easier ways to find what is available. Many organizations offer courses for seniors to help them get better at using technology, and also teach other subjects 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.
Be careful that seniors who have started using online ways to interact and connect understand about online privacy and safety and know how to recognize and stay safe from a scam. Put safety systems in place for this, and monitor their use.
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.
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.
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.
Reliable, updated COVID-19 information can be seen at Ministry of Home Affairs, India’s site Opens in new window along with various advisories. Local information can be seen on the local state/ district/ city sites. 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, 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, firstname.lastname@example.org, 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 useful resource is the iCall Psychosocial helpline for free professional counselling – 91529 87821, Special COVID line – 9152987820 (Mon-Sat/ 10-6 pm), email email@example.com, and nULTA app (chat), Monday to Saturday 10 am to 8 pm.
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 site iCALL Opens in new window has many pages related to COVID (use the search box to look for COVID) on 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. The process is adjusted as the ground realities change, so while experiences of friends and others are helpful, you need to make sure you check this for updated information.
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.
Resources for handling problems caused by constraints in movement (medical and services, remote family support, travel restrictions and logistics challenges).
Many volunteers act 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 Opens in new window, and other social media presence.
Some webinars around stress management at times like this are available from multiple sources, such as White Swan.
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.
5 thoughts on “Dementia Home Care during COVID – Infection Risk, Vaccination, Care Approach”
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!
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!
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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