Trained attendants and respite care for dementia: Observations from India

I keep getting queries because of my site Dementia Care Notes, and the most frequently asked questions by my site visitors are related to getting trained attendants for dementia home care, or getting information on old age homes where dementia patients can be admitted.

My website already contains information on these, but I think people want to hope, and when they are desperate, they want a personal and direct answer. Much of my correspondence time goes in personalized replies to such queries, but I thought I’d put together a sort of summary answer here, anyway.

First, old age homes for dementia patients.

statistics for dementia facilities in India

As per the Dementia India Report 2010, there are an estimated 37 lakh (3.7 million) dementia patients in India and 6 respite care facilities (facilities for fulltime stay, short term or long term) that are specialized for dementia patients. I’ve summarized some data alongside, and you can see the contact information for all six at my website’s resource page here: Dementia Caregiver Resources across India. Add to it the day care facilities, the optimistic estimate of capacity oriented for care suitable for dementia patients is 400.

Four hundred, across India, a nation where the number of estimated patients is 3.7 million.

A massive gap, indeed.

Below are some observations I have to add on this topic–these are, of course, my observations, not an authoritative report, but they are based on multiple data points, and I welcome comments that may improve this understanding.

There are many old age homes/ respite care/ assisted living/ ashrams for elders as such. About their taking dementia patients:

  • Most refuse outright.
  • Some accept dementia patients but many of these then lay down conditions like saying the patient should not misbehave or yell. Many refuse to take bedridden patients, or patients who are uncommunicative or more dependent.
  • Many non-specialized old age homes tell families to take back the patient if the patient shows agitation or misbehavior or gets bedridden. For example, night pacing or agitation can earn expulsion very fast.
  • Even old age homes that accept dementia patients often have no staff training for handling such patients.
  • Most old age homes are not designed for patients who can harm themselves. Patient accidents and injuries are therefore high.

While some families report good experiences (especially if the facility is designed for dementia patients and staffed with trained, sensitive people) other families are not always happy. Here are some problems mentioned to me by families, volunteers, and even ex-staff of such home– (I’m excluding normal problems any old age home may have like poor hygiene, bad food, rooms left dirty, rude staff, and so on). :

  • Patients being tied up by staff so that the staff can sleep/ go for movies
  • Patients falling off beds at night because the night-duty staff stayed awake during the day and was dozing and the patients wanted to go to the bathroom
  • Patients get yelled at by frustrated attendants, and are called all sorts of names and accused of misbehavior
  • Rough handling, visible as bruises on the arm and so on
  • Patients are mixed with normal elders, frustrating for both parties, and the patients end up yelling at/ getting yelled at by these normal elders because the patients behaved in odd ways and the normal elder does not understand it is dementia
  • Patients are moved between rooms without families being told, something very disorienting for the patient
  • Frequent staff changes, and not passing on patient case history across staff members
  • Frequent summoning of family members to “explain” to the patient not to “misbehave”
  • Being asked to take back patient, often at short notice

So finding a good old age home that accepts and cares well for dementia patients is tough. Finding a home that will continue to care for the patient as the patient deteriorates and gets more disoriented and dependent and bedridden is very,very tough. Being at peace with the decision, doing a smooth transition, and remaining free from worry is yet another challenge.(for tips on things to consider when evaluating options, see: Using various dementia/ home care services)

This is not to be pessimistic, just to point out some facts. Some people do strike it lucky and find a good place for their loved one, but just look at the numbers above again and you will see that it is not common…Best of luck there.

Next, trained attendants.

I have no overall numbers for India. This is, frankly, an unorganized and unregulated service as of now. It is a patchy service in supply and quality, with individuals and agencies involved, and some good but many horror stories attached.

I’ve talked to lots and lots of caregivers about their experiences; I have personal experiences, too. I’ve blogged about my experiences as caregiver, as volunteer, and so on (see here for one example: Trained attendants for dementia home care: sharing experiences) And while the numbers of caregivers I am basing this on a few hundred data points and not lakhs, not a single person has ever told me:

We got, on our first attempt, an excellent, hygienic, reliable caregiver who is honest and hardworking, and takes care of the patient without supervision and frees us of all worry and never takes leave. Our patient is always happy with this attendant, and the attendant is always cheerful and happy, too.

Yet everyone who contacts me to get a trained attendant for dementia home care expects something like that🙂

When I start telling the person needing attendants that this process is not so simple, many do not believe me, and some think that I’m just someone who doesn’t know, or am discouraging them because I do not provide trained attendants. Persons who contact me sometimes hope/ dream that they can, just with a phone call, reach an agency that supplies such attendants as soon as you call them. Some go a step further and assume that they will not need to take even a day off, and this new attendant will report for work one morning and the family can leave the patient under the care of this attendant (who is supposedly trained) and go off for work an hour later, free of worry about this aspect of their complicated busy lives.

Perhaps.

But here are the highlights of my observations and thoughts:

  • Good attendants for any type of home care are tough to get, good attendants trained for dementia care are very rare, good trained attendants who can handle your loved one well from day one without any training from you are non-existent because there are things about your patient only you can tell them (the patient cannot).
  • Getting a good attendant anywhere near the scenario above is like getting a pot of gold (maybe platinum). Don’t let that attendant go!!!
  • Be ready for the typical problems of needing to train, to supervise, coping with absences/ sudden quitting
  • Be ready to budget time and energy to help the attendant settle down and be ready for constant supervision and for unannounced absences

I’ve put together a comprehensive page on this topic here, with lots of information and practical stuff to help families effectively get and use attendants. It includes stuff that can be used to orient a new attendant, too. It distills what I’ve gathered across so many caregivers and volunteers, and I keep adding to it when I get some fresh, useful data or suggestions, so if you are concerned about using attendants, have a look at the page here: Using Trained Attendants for Dementia Home Care

And no, I don’t train attendants or supply them or know of any reliable agencies. In fact, from what I know, every respite care facility has problems recruiting such staff, has problems training them (some recruits are just not willing to learn), has problems supervising them and has problems retaining them. The only thing is, facilities can close down when things get too tough. I’ve seen that happen, too. But we home caregivers can’t close down our homes…

…I’ll probably add some thoughts on what can be done by volunteers to ease the situation in another post…

Edited to add: The second part of this post is available now. Please read: Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

Links referred to in this post:

About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

4 Responses to Trained attendants and respite care for dementia: Observations from India

  1. Pingback: Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India « Swapna writes…

  2. subhash chand goel says:

    Old age homes are not a solution. We are just our issues to the society. Who shall foot the bill for all that stay and care. Training of careprovidors begins at home and as a part of family we need to be prepared to accept the reality and work towards reduction in suffereing of those who have cared for us when we needed.
    Regards
    Subhash Chand Goel

  3. Pingback: Trained attendants for dementia home care: sharing experiences « Swapna writes…

  4. Pingback: When families need attendants to help them care for dementia patients (India) « Swapna writes…

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