Long-Distance Caregiving for Dementia Patients in India

Sometimes, caregivers have to coordinate dementia care for someone living in another city or country.

What caregivers can do: Understand the current state of the person with dementia. Understand the available support systems. Coordinate with locally residing relatives and available services to manage safe care from a distance. Check the status regularly. Keep adjusting the arrangement. Be ready for emergencies.

Children and other close relatives of persons with dementia may be in another city or country. They cannot move back to live with the person because of things like their job or the education of their children. And they may not be able to get the person to move in with them. So they have to understand the situation, take decisions and provide help from a distance. Terms used to describe this are: long-distance caregiving, remote caregiving, and overseas caregiving. This page discusses various aspects of such care.

A general understanding of remote care aspects

Long-distance care requires understanding the person’s abilities, the tasks to be done, and the person’s environment and support systems. The situation keeps changing with time. Long-distance caregivers have to regularly review of the situation and plan and support suitably.

If you are a long-distance caregiver, you cannot do the day-to-day care of the person. You need a local “team” for this–persons living with the person with dementia, local services, support systems, etc. Even emergencies have to be handled by this team. What you do from a distance is plan and manage things. You have to understand the type of problems that can happen. You have to get data regularly and respond to every situation. You have to make sure they will be supported during emergencies.

Remote care is difficult for persons with dementia because they are not able to explain their situation. They can harm themselves. You cannot depend on their telling you, “I am okay”, because they may not realize they are confused or making mistakes. And even if they are okay just now, something can happen that will put them at risk.

Remote care for such a person in India is even more difficult. This is because all remote care depends on local teams and local support systems. Unfortunately dementia awareness in India is very poor. Society in India expects family members to help elders through ageing and disease. There is hardly any institutional support for dementia patient care. Systems like the medical system and police are not designed to help impaired elders live alone. There are no checks on the quality of available services, and so there is no way to know how reliable a service is.

The following sections discuss long-distance care for dementia persons in India.

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Possible scenarios of long-distance care

There are various scenarios possible for long-distance care for someone in India. Some broad categories are:

  • There is no family member living full-time with the person in India.
    • No family member is living with the person. Remote caregivers handle care from another city or country. For this, they use local paid staff and various services and support systems. This is rare in India because it is very difficult to arrange this satisfactorily. Some families try it during early stage dementia, but it is very risky.
    • The person lives alone in India but many long-distance caregivers take turns to come to India for the care work. These remote caregivers make sure that someone from the family is always in India with the person. This is possible only in families with many siblings who can fit in so much travel and stay.
  • The person with dementia is living with someone in India. This could be a child or sibling or spouse. Other family members live at a remote location and try to contribute from a distance. This is the most typical situation.

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Understanding dementia care realities of India

Whatever your type of long-distance care, you need to know how dementia care is handled in India so that you can plan and manage from a distance.

Family members living outside India often do not know how poor existing systems in India are. Many other countries, such as the USA, have much better support for dementia. When a person with dementia wanders off in the USA, the police starts searching as soon as they are told. Pictures are flashed across TV. Also, most such persons wear bracelets. People check for bracelets when they see a confused person. Things are different in India. Persons who see a wandering person may not realize this person is “wandering”. They may not try to help the wanderer or check if the wanderer has a bracelet or tag with contact information. They may not keep the person safe while they tell the police or try to find the family members. The police does not have the time or staff to begin a large search operation as soon as someone goes missing.

If you are outside India, you need to understand the status of dementia awareness and caregiver support in India. Without this knowledge, you cannot make plans. Any suggestions you give the live-in caregivers in India are likely to be impractical. Use the links in the references below to get an understanding of the Indian context.

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Locating relevant resources in India

It is very difficult to locate resources in India while living abroad. Online information is often outdated and wrong. Many volunteer organizations do not have web sites. The websites that exist often have outdated contact details, timings, services, rates, etc. You cannot know from most websites whether the organizations are still functioning. E-mails bounce or remain unanswered, and phone numbers do not work.

Online directories of resources are also often wrong. Information in online groups such as answers.yahoo.groups may also be wrong. Services like “Ask me” are somewhat better. Some pan-India elder care and dementia care organizations have some better information. Also, police helplines and special elder helplines can sometimes help. But you will need to cross-check any information you get.

Call the numbers listed yourself. Or use friends and contacts in India to check the information you got from the Internet. Contact the colleagues of your parents and their children. They can be good sources for information because they may be facing similar problems and may know who can help. Look at old college yearbooks and alumnus newsletters, and get in touch with old friends. Find colleagues and students and friends and old neighbors of your parents. Maybe you can share information and help each other.

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Getting information required for care from a distance

To plan and manage care, you need to know the current status and also get regular updated information. You need the person’s history to understand the type of care needed. You also need data on things you may need to manage, such as bank accounts, utility bills, income tax returns, and property tax payments. Create a list, and ask others around you for ideas on what else you have to gather data on.

It may be difficult to know from a distance what information is relevant. You will typically need to come to India to get the information. The data may not be easy to find. It may not be organized for convenience. You may also need to set up systems so that you can manage things online once you return to your home. For example, you can set up online payment for the electricity and phone bills of the house in India. You will have to protect the investments. For example, you have to make sure the money and locker contents cannot be misused. You need to meet the doctors to discuss the situation and options for patient care.

Some information is much trickier to get. One example is information on property and money. Many Indian TV soap operas show greedy children trying to grab parental property. A parent with dementia may be suspicious about a child asking for such data. Friends and relatives, too, may be suspicious. Look for elders who understand the situation and whom the person trusts. Such elders may be able to convince the person about the need to share data. Even so, you may not manage to safeguard all that your parent owns. Proceed gently, and with caution.

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Living arrangements if the person with dementia is not staying with family members in India

It is difficult to make living arrangements if the person with dementia lives alone and care has to be handled entirely using remote care or by remote caregivers taking turns.

It is very risky for someone with dementia to live alone in India, just with the help of remote care. This is because:

  • You cannot expect such persons to realize the extent of their confusion and problems. They may not know how disoriented they are. They may not know or tell you that their abilities have reduced so much that they cannot live alone.
  • They may make unsuitable decisions. They may donate off their assets. They may harm themselves. No one will notice and stop them, or warn the remote family members.
  • No one will know and call for help if the person wanders off.
  • Usually, neighbors and others do not understand dementia well enough to be supportive.
  • Systems like the police and medical community are not in a position to support someone with dementia living independently.

The person may have to live alone for some time while the family members try to make more arrangements. Try to keep independent living to a minimum. Leaving the person with dementia under care of trusted maids or paid attendants requires close monitoring by local well-wishers. It requires thought and planning. Many cross-checks are needed to ensure safety and well-being. Constant monitoring is needed. Some suggestions for such situations:

  • Set up the person’s home for 24-hour help by using several paid carers. There should always be backup in case one carer is absent. Some of these paid carers need to be responsible, educated, and reliable. Also, medicines must be monitored because the persons sometimes forget they need medicines. For example, a person may forget that she has hypertension and refuse to take the medicines for it.
  • Use reliable paid staff for other work at home too, like cooking, household work, driving.
  • Enroll the person in a home nursing and medical care system where doctors visit regularly for checkups. Set up systems for medical emergencies, so that the paid help knows what to do in case of problems. Remember that persons with dementia may not be able to handle their medical records. They may not consult a doctor when unwell.
  • Set up security systems to ensure the person is safe. If the paid carers abscond, someone local should notice and step in and help. Make sure you have ID proofs of all employed persons. Get them verified by the police if possible.
  • Petty thefts are very difficult to avoid. Rearrange the home to minimize these, but accept that these may happen. Focus on bigger safety and security issues rather than a missing set of spoons.
  • Notify the nearby police station if the person is living alone.
  • Involve neighbors. Ask them to keep an eye on things and to inform you if they notice any problem. Request them to step in if there is an emergency.
  • Call frequently to get information and updates, to reassure the person with dementia, and to resolve any problems. Many remote caregivers call twice a day or more. If possible, use video calls or video Skype to check visually and notice signs of abuse or neglect.
  • Ask relatives and friends in the city to keep checking in. Pull in friends, colleagues, etc.
  • Be very careful about financial transactions, bill payments, tax, etc. Persons with dementia may start making serious mistakes in these. Also, others may try to cheat or rob the person. This adds to the risk of staying alone. If the person wants to remain independent, check the transactions frequently so that you know as soon as something odd happens. Take over financial transactions as soon as required. Set systems so that you can manage them online from a remote location.

If you work in an organization with a local branch, use local colleagues to check the person’s state.

You need to visit the person frequently to check the situation and see that things are running smoothly. For example, you may decide to come every alternate month or more often. If there are other remote caregivers too, take turns so that at least one of you is always there with the person. Try to minimize the time the person spends alone.

As the dementia progresses, consider moving the person to a well-equipped assisted living facility.

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Decision making related to care options, moving closer or calling parents over

Most long-distance caregivers experience guilt and face dilemmas. Many Indians want to support their ageing parents. They face severe emotional conflicts if their parents need help, and they cannot be present because they live in another location.

The problem is worse when the remote caregivers are in another country.

Moving back to India is not easy because of the impact on careers and on the education of the children. Nor is it easy to adjust back to India. Some caregivers may be married to non-Indians, which makes moving back to India an even bigger adjustment.

It is also not easy to take the person with dementia to another country. The journey itself can be very long and tiring. Visas and insurance can be a problem. Providing care in another country can be very difficult. The carers there may not know the language the person speaks, may not know how to cook food the person likes, etc. The person may not feel comfortable in a new house and country. Dementia usually makes it difficult for persons to learn new things and adjust to new places, and moving to another country is a major change. Moving a person with dementia could worsen the dementia symptoms.

Caregivers at a distance often wonder about the pros and cons of moving to India or calling their parents over. Forums are available for discussing such issues and exchanging information. Some links are given below.

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Contribute remotely for care by others in India

Sometimes, the person with dementia is living with part of the family. The family members living with and helping the person on a day-to-day basis are the “live-in” caregivers. Other close family members (children, siblings), trying to participate from a distance are long-distance caregivers.

First consider the situation where the only family member with the person with dementia is an elderly person. This could be the spouse or a sibling or relative. This elderly caregiver is present in the house to manage the care, and will notice if the person is unwell or the paid carers do not come for work. But this elderly live-in caregiver may be frail and have health problems. Care can be physically and emotionally tiring for elderly caregivers. The children living at a distance have to set up systems for the person with dementia as well as for the elderly caregiver. They have to ensure that the elderly caregiver can contact required services and that both the person and the elderly caregiver get good medical support. The elderly caregiver needs breaks and respite. Health care of both elders needs to be arranged. Both can be enrolled in a home nursing program.

One problem that often arises is that the elderly caregiver falls ill or gets a stroke, but the person with dementia does not realize this is an emergency. So the unwell elderly caregiver does not get help in time. The person may also harm herself in that time because there is no one watching. Video calls twice a day can be very useful. Also, try to have a full-time maid or attendant who will contact you in an emergency. Visiting relatives and concerned neighbors can remain alert and help in time.

The other type of situation is that the person with dementia is living with a child in India. Here you need not worry as much about the actual care because there is direct caregiving support at home. The “remote” coordination and support is more related to sharing work and costs.

You may want to participate in the care and help for a parent living in India with one of your siblings. Typical ways to do so include giving suggestions, taking on tasks, and making visits.

Note that while you may think of yourself as a long-distance caregiver, your siblings in India may not think of you as a caregiver because you are not actually doing care work. Some families find ways for everyone to be part of the care. But in other families there are problems like resentment, misunderstandings on property, and disagreements on care. For example, family members in India may resent your comments because they think you are living an apparently carefree and luxurious life in another country while they do all the hard care work.

To avoid or reduce conflicts, you need joint planning, open and friendly relationships and trust, and regular communication. You need better coordination and sharing of work and costs. This topic is discussed in detail on another page. Briefly, here are some things you should remember:

  • Relatives in India may not accept a dementia diagnosis or appreciate that it requires special care.
  • India has very few resources to train family caregivers or support dementia home care.
  • Indian caregivers have many neighbors, friends, relatives, colleagues who give well-meaning but inappropriate advice. The opinion of one or two family members living abroad may seem like a minority opinion. The live-in caregivers may be more concerned about what people around them say every day.
  • Unless you live in India for some weeks and actually face the problems, you cannot appreciate how different the systems here are.

Some useful things that you can do :

  • Give books, DVDs, and manuals to help the family in India understand dementia and caregiving. Give good, standard books that the family in India can use to explain dementia to outsiders and thus reduce the criticism they face.
  • Provide tools and aids that are not available in India.
  • Be available in an affectionate, non-judgmental manner to the family in India when they need to talk and de-stress.
  • Be very sensitive while discussing and coordinating care with family caregivers in India. Live-in caregivers are often misunderstood and criticized by local friends, neighbors, and relatives. They should not feel you are one more person trying to find fault with them.

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See also…

Resources/ references on Dementia Care Notes and related sites for above topics

Understand the dementia care scenario in India:

Interviews on this site with actual experiences of caregivers handling long-distance care of patients in India:

External links and references related to topics above

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Page/ post last updated on: October 6, 2016