When a dementia patient lives in one city, the family members in other cities/ outside India find it difficult to participate in the caregiving because of the distance. Various names are used to describe this role, such as long-distance caregiving, remote caregiving, and overseas caregiving. Distance complicates the management of caregiving responsibilities. It often becomes difficult for long-distance caregivers to understand the situation, respond in time, and control events. This page lists various aspects of long-distance caregiving, and provides suggestions and resources.
Sometimes, caregivers have to coordinate care for a patient living in another city/ country
What caregivers can do: Use regular assessment to understand the current state of the patient. Understand the available support systems in the city. Coordinate with locally residing relatives and available services to provide a safe caregiving environment from a distance. Check regularly and keep adjusting the arrangement. Be ready for emergencies.
On this page:
- A general understanding of remote care aspects
- Understanding the dementia care realities of India
- Locating relevant resources in India
- Coordinating care from a distance
- Decision making related to care options, moving closer or calling parents over
- See also…
A general understanding of remote care aspects
Children of dementia patients may have settled in different cities and countries (typically for their jobs and education). They are not with their parents when ageing problems start and dementia sets in. They cannot always relocate with the ailing parent or to ask the parent to move in with them. Thrust in the role of long-distance caregiving, they often face intense emotional uncertainties as they struggle to understand the situation, take decisions and provide support from a distance.
Long-distance caregiving involves an on-going, realistic and comprehensive assessment of the situation so that care can be planned, monitored, and fine-tuned. This includes understanding the patient’s abilities and required activities (which keep changing), and the surrounding environment and support systems.
Planning for care involves assembling a “team” of local persons and support systems to actively manage the care. Systems have to be put in place for care sustained, suitable care and to handle potential contingencies. Emergencies need to be anticipated. Communication is key to stay well-informed and be able to respond to changing situations.
An overview of remote care (not fully applicable in India) can be obtained from: So Far Away, Handbook for Long-Distance Caregivers, and How to deal with long-distance issues.
Remote care is trickier for dementia patients because they are unable give a proper, comprehensive assessment of their situation. They are prone to self-harm. Family members cannot depend on their saying “I am okay”, because the patients are not aware of their confusion and mistakes. Patients are also bewildered by objects and people around them, and may spin into aggression or withdrawal. (Some guidance is available at: Long-Distance Caregiving from alz.org, USA)
But persons concerned about dementia patients in India face challenges specific to the Indian context. For example, plans for remote care depend heavily on local support systems. But dementia awareness in India is very poor, and society expects families to help elders through ageing and related problems/ diseases. Institutional support for patient care is poor, and where other systems (medical, police, others) are not focussed on helping elders live independently and alone.
The following sections discuss long-distance caregiving for the specific context of dementia patients in India.
Understanding dementia care realities of India
Remote caregivers who have lived outside India for many years usually do not know enough how dementia and caregiving are handled in India. Many other countries (such as the USA) have different levels of dementia awareness and support systems.
For example, when a dementia patient wanders off in the USA, the police mobilizes instant searches. Pictures are flashed across TV instantly. Also, patients wear bracelets and people are aware of such bracelets and check for them if they spot some confused-looking person. Things are different in India. Persons seeing a wandering patient may not realize this person may be confused. They will not think of checking for a bracelet. They may not keep the person safe while they try and locate family members. The police force lacks the time, resources, and staff strength to start searching on a massive scale.
Before family members abroad look for ways to support patients in India, they need to understand the realities of dementia awareness and caregiver status and support in India. Without this, their suggestions may be considered irrelevant by caregivers in India. There could be misunderstandings, even bitterness and conflict.
A good point to orient to the Indian context are: this page on cultural differences between dementia-aware countries and India, and this page on applying material from other countries to India.
Also, planning and coordinating care is more difficult when family members are scattered, and the issues are more prominent when some family members are in another country, living apparently carefree and luxurious lives (or so the persons in India think). Read here for general tips on coordination within the family.
In addition to the suggestions available in documents referred to in the previous section, here are some points long-distance caregivers can consider while evaluating options or offering advice:
- Relatives in India may be unwilling to accept a dementia diagnosis or understand that special caregiving is required
- Very few resources are available in India to train family caregivers and to support dementia home care
- Indian caregivers are surrounded by neighbours, friends, relatives, colleagues who give well-meaning but inappropriate advice and also put pressure on the caregivers to do things that may be suitable for normal elders but is stressful and unsuitable for elders with dementia. The opinion of one or two family members living abroad may seem like a minority opinion, and not matter as much because caregivers have to face others on a daily basis
- Systems and support in India is very different from that in some of the other countries, and this is not easy to grasp without actually facing the problems for a few days
Some particularly useful things that long-distance caregivers can do :
- Provide enough authoritative material (books, DVDs, manuals) to help the family in India understand dementia and caregiving, and also help the family in India explain the problems to those who are well-meaning but critical
- Providing tools and aids that are helpful for patients and not available easily in India
- Be available in an affectionate, non-judgmental manner to the family in India when they need to talk and de-stress
- Be especially sensitive while discussing and coordinating care with family caregivers in India. Live-in caregivers are often misunderstood and criticized by local friends, neighbours, and relatives, and may feel you do not understand their problems because you live in a different culture.
Locating relevant resources in India
Locating relevant resources in India while living abroad is tricky because the available online information is often wrong/ misleading.
Most volunteer organizations are not net savvy; many have not set up any web site. Others use a consultant to set up a website, and then do not think of maintaining the data and keeping it up to date, or they lack the required technical skills. Regularly maintained website data is not common. For example, an organization may have set up an impressive site in 2005, and not updated it since. Phone numbers change, 24 x 7 services are changed to a few hours a week, rates are changed, organizations stop functioning, and so on. E-mails bounce or remain unanswered. It is therefore necessary to call up the contact numbers, as well as ask local friends to make a few phone calls and visits to validate information.
Often, services like “Ask me” have more up-to-date contact information on an organization than the organization’s own website.
Another way to get information is using online groups, such as answers.yahoo.groups; again, any information obtained will need to be validated.
Some pan-India elder care and dementia care organizations are better equipped for providing information. Also, cities have police helplines and special elder helplines that often provide leads.
Use friends and contacts in India to validate information gathered using the Internet and phone calls. Colleagues of parents and their children are other good sources for information, as they may be facing similar care-related problems, or know others who can help. It is often worth the effort of flipping through old college yearbooks and building back contacts. Also, locate colleagues and students and friends and old neighbours of your parents; maybe some of them are in a position to pool information and resources with you and you can help each other.
Caregiving is easier when you manage to get a team together.
Coordinating care from a distance
Both initial and on-going assessments are critical for effective care planning and management. The documents referred to above give good checklists to use; supplement these with other relevant things. Some information is trickier to get, and the long-distance family members have to proceed gently, patiently, and with caution, setting aside enough time.
For example, parents may be reluctant to share financial and tax-related information; too many Indian TV soap operas revolve around greedy children trying to grab parental property. Relatives may be suspicious and believe the parent’s accusations because they don’t understand or believe the dementia diagnosis. Yet funds have to be managed and tax returns need to be filed, and the patient may not even remember how these are done. Besides, a confused patient could even be cheated or lose locker keys or sign away all the money to a sweet-talking charity.
With most people (patient and others) insisting that the dementia symptoms are just “old age”, there is no acceptance of the limitations and growing confusion and inabilities. People insist that the patient is “normal” and expect the patient to take decisions and remain active well beyond what the patient can handle. This stresses the patients, who try to hide problems and act “normal”, but lapse into confusion, make wrong decisions, and harm themselves.
Multiple options for living arrangements are possible; however, it is very unlikely that a dementia patient can live totally alone in India. Even if dementia is diagnosed in a very early stage (unlikely in India), living totally alone and independently is risky because:
- Patients may not realize that their dementia has reached a point where they cannot live alone any more. Expecting the patient to, over phone, explain the deterioration in his/ her abilities to concerned family members is unfair and unrealistic.
- Patients may make unsuitable decisions (like donating off their assets), or harm themselves, and no one will notice and stop them, or warn the remote family members
- If a patient wanders off, no one will know and call for help.
- Usually, neighbours and others do not understand dementia well enough to be supportive without being intrusive. Support systems like the police and medical community are also stretched and not geared for on-going support of such independent living.
Because of these, even if the patient has to live alone till the remote family members make arrangements, such independent living should be kept to a minimum.
It is also not easy to set up things that allow a dementia patient to live without any close relatives, merely with household help. Leaving the patient alone with a set of trusted maids/ paid attendants requires close monitoring by local well-wishers.
Some suggestions:
- Set up the patient’s home for 24 hour help by using multiple paid carers, so that there is backup in case one is absent. Some of these need to be responsible and educated and reliable. In particular, medication has to be monitored, because patients sometimes forget why they need medication and stop it. For example, a patient may forget that she has hypertension and refuse to take the medicines for it.
- Employ reliable paid staff for other work at home, like cooking, household work, driving.
- Enroll the patient in a home nursing and medical care system where doctors visit regularly for checkups. Set up systems for medical emergencies, so that the employed help knows how to tackle problems. Remember that patients may not be able to handle their medical records, and may not even think of consulting a doctor when unwell.
- Set up security systems to ensure the patient is safe, and that if the paid carers abscond, someone will be able to step in and help. Make sure you have ID proofs of all employed persons and that they are verified by the police, if possible.
- Petty thefts are extremely difficult to avoid. Rearrange the home to minimize these, but accept that these may happen, and focus more on bigger safety and security issues rather than a missing set of spoons.
- Notify the nearby police station of the patient living alone
- Involve neighbours and locally residing relatives and friends, and request them to keep an eye on things and step in if there is an emergency, while also informing you
- Call frequently (many remote caregivers call twice a day or more) to get information and updates, and to reassure the patient and resolve any problems. Try using video calls/ video Skype so that you can also check visually what is happening and get alerted in case of abuse/ neglect.
- Ask other relatives/ friends in the city to keep checking in. Pull in friends, colleagues, etc., to keep an eye on the home care situation.
- Do not expect the patient to handle financial transactions, bill payments, tax, etc. if the patient wants to remain independent, make sure you check the transactions frequently, as the patient may make serious mistakes out of confusion. Be ready to take over these any time, and set them up so that you can manage them online.
Remote caregivers who work in an organization (or run a business) that has a local branch may find it easier to ensure that the patient is looked after and problems are noticed in time.
As remote caregivers, you need to visit the patient frequently (possibly every other month or so) to ensure that things are running on track, and to re-assess the state of dementia and the support needed. If there are multiple remote caregivers, they can coordinate to take turns so that there is at least one such remote caregiver residing with the patient at any given time. Or they can try to minimize the time the patient spends alone.
As the dementia progresses, it may be safer to move the patient to a well-equipped assisted living facility.
The situation is easier to handle if the patient is living with some family members.
Even if “family” is only an elderly spouse (parents living alone, where one has dementia), at least there is backup arrangement in case the paid carers do not report. Set up things such that the caregiving spouse can easily access all required services and that both the patient and caregiving spouse receive enough medical support. The caregiving spouse also needs to get enough breaks, and also respite. Also, the health care of both elders needs to be arranged–both can probably be enrolled in a home nursing program.
Sometimes, the patient is living with part of the family (sometimes termed as “live-in child”) while other close family members (children, siblings) are the long-distance caregivers.
While in such a setup the long-distance caregiver need not worry as much (because there is direct caregiving support at home), there are other problems that occur, mainly on division of work, resentment, misunderstandings on property, and disagreements on care arrangements and decisions. These are discussed in the page: Coordinate caregiving with family members Also read the interview of one such caregiver here, to get an idea of the issues involved. Proper joint planning, cordial relationships and trust, and regular communication can make such coordination smoother and avoid/ reduce conflicts.
Decision making related to care options, moving closer or calling parents over
Most long-distance caregivers experience guilt and face dilemmas. Many Indians are brought up to believe that they must support ageing parents, whatever the adjustments needed, and they face severe emotional conflicts when their parents need help, and they are unable to be present all the time because they live in another location.
The problem is more acute 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. On the other hand, uprooting parents from India and asking them to move to another country is also difficult; parents may not be able to adjust to a different location and society, and the very act of moving a dementia patient could worsen the condition.
Caregivers at a distance often wonder about the pros and cons of moving to India/ calling their parents over. Forums are available for discussing such issues and exchanging information. Some examples of exchanges on forums for such issues are available here, here, and here.
See also…
Interviews on this site with caregivers handling long-distance care of patients in India:
- Children living in another city use a combination of various services to support an elderly mother caregiving for the father: Our presence here makes a difference to her.
- Misunderstandings between siblings while coordinating care and taking decisions: Conflicts between siblings.
- A caregiver’s comments on how compromises have to be made with respect to thefts: Siblings arrange remote care.
- Using streamlining of work, frequent communication, visits and technology for long-distance care: Long distance caregiving challenges and approach.
