Memory loss care in India: what families actually do

The daughter or the daughter in law does it

In most Indian households the care lands on one woman, and she did not volunteer. It goes to whoever is physically nearest and has the least ability to refuse, which in practice means a daughter who did not marry out of the city, or a daughter in law living in the same house.

This matters for a practical reason and not only a fair one. The person doing the work is frequently not the person the family consults, and is almost never the person who controls the money. Decisions get made by a son in another country on a Sunday call, carried out by a woman who was not asked, and then revised the following Sunday. If you recognise your own family in that sentence, fixing it is worth more than any single thing you could buy.

Name who is actually doing it, out loud, in front of everybody. Then give that person the say. It costs nothing and it is the single change families report the most relief from.

Help is hired, not moved into

Residential care exists in the big cities and almost nobody uses it. The cost is high, the cultural weight against it is heavier, and most families would rather bring somebody in than send their mother out.

So the normal path is an attendant at home. Usually a twelve hour shift, sometimes a live in arrangement, arranged through an agency or through the neighbourhood network of whoever already works in your building. Both routes are common and they fail in different ways.

• Agency: more expensive, replaces somebody who quits, and rotates staff constantly, which is the worst feature for a person who cannot hold new faces.
• Privately hired: cheaper and far more stable, and you carry the risk yourself when she does not come.
• Either way the person you hire has usually been trained for bedbound patients, not for somebody who walks, talks and argues. That gap is yours to close and it is mostly about patience, not skill.
• Ask for the same person every day and pay something extra for it if you have to. Continuity does more here than qualifications do.

The medicine cabinet is fuller than it should be

Indian households accumulate prescriptions. A physician, a cardiologist, somebody the neighbour recommended, and whatever was left over from last year. For an older person who is already confused, the pile itself is part of the problem: several ordinary drugs for sleep, allergy, bladder and stomach make confusion worse, and nobody is looking at the whole list because each doctor only sees their own line of it.

Put every single box on the table, photograph it, and take the photograph to one doctor with the question "which of these can come off". It is the cheapest useful thing available to you and it is very often the one that produces a visible difference.

Where the real help is

Less than most families think, and more than they find. There is no national service, and government schemes for older people exist mostly as pensions rather than as care.

What does exist is a small number of organisations who have been doing this for decades and will talk to you today.

• Dementia India Alliance runs a helpline and support groups, and it is staffed by people who have done this themselves.
• ARDSI has chapters in most large cities, with day care in several of them.
• The Alzheimer’s Association publishes for Indian families too, and their caregiver pages are the best free reading in English.
• Your parent’s own doctor, for the medicine list above. That is a conversation worth booking on its own.

What the joint family gives and takes

A house with several adults in it is genuinely better for somebody losing their memory. There are more familiar faces, somebody is usually home, and the day has a shape that does not depend on one person showing up.

It also means more people with opinions, a longer path to any decision, and a parent who performs wellness for visiting relatives and then collapses afterwards. The most common Indian version of this illness is not loneliness. It is a crowded house in which one person is quietly doing everything and being second guessed by six.

Nobody says the word for about a year

The gap between the family noticing something and the family doing anything is long here, and it is measured in years rather than weeks. It is not ignorance. It is that saying it out loud commits somebody to changing their life, and everyone in the room can do that arithmetic.

The way through it is not a better argument. It is a short list of specific things that happened, with dates, taken to one relative whose agreement actually unlocks the next step. There is a whole page on that conversation and it is the one most families need first.

Where else to look

These are other people’s pages, not ours. Our own published work and the neurologist who reviews it are on the research page.

• Cultural adaptation of Alzheimer’s disease assessment scale-cognitive subscale for use in India and validation of the Tamil version for South Indian population.
  The cultural adaptation of the same questionnaire for use in India.
• Hindi Version of Addenbrooke’s Cognitive Examination III: Distinguishing Cognitive Impairment Among Older Indians at the Lower Cut-Offs.
  A Hindi memory questionnaire validated for older adults in India.
• Alzheimer’s and Dementia Support, India
  The Alzheimer’s Association’s own pages for families in India.