Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

Yesterday, I shared my observations related to availability and quality of trained attendants and respite care for dementia in India (Trained Attendants and Respite Care for dementia: Observations from India); today, I am setting down some thoughts on what concerned agencies and volunteers can do right away to make a difference in a way that can scale up fast. I’m no policy expert, but hey, desperate people get wild ideas, and here are mine.

For those trying to help caregivers, the pathetic state of available support is disheartening. Day after day, one is forced to break the sad news to overwhelmed caregivers and I’ve seen many concerned persons getting distressed that they cannot help the way the callers (or email-writers) obviously expect them to do. I’ve felt down myself, both as a caregiver and a volunteer.

Some volunteers begin considering setting up agencies or respite care homes themselves. They redirect energy, time, and resources into trying to set up whatever is needed to train a batch of attendants, or start planning a specialized dementia care home. Often, many of these persons realize midway this is just so much work, and doing this means they cannot do anything else. They feel they are spending all their energy for something that may benefit at most 10 or 20 families, and wonder whether this is more important than what they were doing earlier. Also, being committed to a cause and passionate about it does not naturally equip one to run a full-fledged establishment for fulltime care. These volunteers/ organizations then give up, or start something that fizzles out, having lost valuable time and energy (and sometimes goodwill) along the way.

Here is what I think:

Ideally, there would be this huge nodal body that sets up gazillions of agencies that supply excellent trained attendants at very affordable prices, and also creates heaps of day cares and respite cares so that no dementia patient remains unsupported.

But that does not seem feasible, at least in the short run 🙂

We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities.

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.

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.

Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on leave 😦

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  (ETA: The survey is now closed, and the link has therefore been removed)

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

When families need attendants to help them care for dementia patients (India)

One common problem caregivers face in India is finding nursing attendants who will take care of the dementia patients. Such assistance is needed when the dementia patient is in the middle or later stage and cannot be left alone because the patient may need help with activities of daily living, or is otherwise prone to wandering, and the family members cannot do this kind of care giving full-time.

In India, people employ a untrained maid in the beginning for such help, but once the patient starts getting incontinent or otherwise difficult to handle, we usually get a nursing attendant from a home nursing agency.

The problem is, even ‘trained’  attendants are rarely trained to care for dementia patients. Most attendants have undergone a week or two of training, and while they know about first aid, home nursing and bed sores, they do not know about dementia. So, faced with a dementia patient’s difficult behavior, they take every frustration, every anger, as a personal insult. When the family members say this is a disease, they do not believe it. They get upset and this comes out as either agitation with the patient, or depression, and the situation escalates. Most stints by attendants are short-lived and end with sorrow and bitterness as the attendants cannot cope with the situation.

Based on my experience, and experience of other caregivers I have talked to, here are some suggestions for family members who need attendants to care for dementia patients:

Gather resources: Every city has some resources that can help: To get information on support groups, societies, nursing agencies that can help you understand caregiving better and know where to locate attendants, or equipment and supplies you need to caregive, you can: