Where dementia caregivers in India need help

Because time and energy are limited, because there is so much that can be done, because I need to prioritize (or risk going crazy), I decided to use a simple, single question survey to gather data from dementia caregivers in India/ people involved with them. I put up the survey in the second week of February.

I am grateful to every caregiver/ friend of care giver who took time to share their thoughts or forward the link/ e-mail to someone else who may have been interested.

In this post I am analysing the first batch of responses received: the 17 responses I received up to March 14, 2011.

First, about the questionnaire (given below). My simple, single question survey collected no personal data, but also did not allow a person to respond twice. Respondents could choose as many options as they wanted. I expected them to tick any options they considered helpful, and if someone ticked all options, it would be because that person genuinely felt all the choices offered were helpful.

The analysis below is of the 17 responses received up to March 14, 2011. These responses had trickled one at a time, and apparently came from a scattered profile of individuals who had somehow heard of the survey. I started this analysis when responses tapered down. Then, after doing this analysis, when I checked to see whether a couple more responses had trickled in, I was surprised to see that there had been a spurt of responses on March 15 and 16. I’m doing this post to capture the insights so far, and if any additional responses I get later provide any additional insight, I will add another post later.  

So far, for this first batch of 17 responses, the counts fell in two clear categories.

Most respondents chose the following options:

  • Availability of trained attendant (14)
  • Training programs for caregiving skills (12)
  • Home nursing services (12)

And fewer chose these other three options:

  • Support group meetings (6)
  • Caregiving books/ videos (6)
  • Day care/ respite care (7)

In the “others”, I received the following three comments:

  • And more information available in public which helps you understand that dementia is an illness not something that you need to hide away!
  • Professionally Trained Nurses who do not take the other inmates of the house for a ride.
  • knowledge of potential volunteers for caregiving

So, folks, that is the raw data: interpret it as you will. Below is my impression.

My overall impression is that these respondents were looking for ways to handle care at home, and they were looking for both skills and services that would help them do it. They did not consider that reading books or seeing videos would help them as much as attending a training program on caregiving skills. They didn’t think support group meetings would help as much. And they were not considering day care/ respite care as actively as improving their ability to take care of the patient at home.

After all, home is where care begins.

Unfortunately, as an individual volunteer, I am not in a position (and lack the time and energy) to arrange training courses myself. If an organization arranges a course, I conduct sessions as required.  I hope that organizations that arrange dementia caregiving and dementia management trainings will arrange trainings for caregivers more often, because people clearly want to be trained.

We also need trained attendants (persons trained to look after dementia patients). People use various terms for them, like ayahs, home help, home caregivers, even dementia nurses or dementia aides, but these are really paid helpers who will stay with the patient for several hours (or even the whole day) and know enough about dementia to effectively handle the behavior challenges like agitation and wandering, without getting flustered. Again, we need organizations who arrange the required trainings. People like me are available to help conduct sessions.

My personal experience has shown me that, given how unreliable attendants are, we home caregivers fare better if we can train the attendants ourselves for dementia-specific care; I have done this for the attendant I use, and it worked out well. I know a few others who did so, too. I am considering preparing “training material” that home caregivers can use to train attendants for dementia care. Any ideas, anybody?

It seems a pity to me that dementia support group meetings have ranked low. Some caregivers have told me that attending meetings of support groups made a lot of difference to them, because they realized how common the problems they faced were, and could share tips; I had a similar experience.But support groups are not common in India, and maybe people need to be introduced to this concept so that they can benefit from support group meetings. Then again, there is a possibility that some people who have attended such meetings have found them ineffective. If so, it would be very helpful to know why the dementia support group meetings did not work out well for them…

I was sorry (though not very surprised) to see that dementia/ caregiving books and videos did not rank high. I can quite imagine that a dementia workshop, with faculty and role plays and an opportunity to interact and ask questions is more engaging and effective than reading a book. But again, there is a limit to how many such training workshops can be held, and at which locations.

This makes me wonder whether part of the problem is because existing books and videos are not very interesting or relevant. Most currently available material is prepared for a Western culture. I wonder whether better made videos, made using India-based examples, and with suitable pictures and examples would help.

Again, I invite ideas on how we can make material (books, videos, pamphlets) more engaging and effective for caregivers in India, because we have to reach out to large numbers, and training a few dozen people twice a year in a large metro cannot suffice. Very few cities have any dementia training programs, and the few cities that have them, hold them once or twice a year, for a limited class size. This is just not enough. We need every possible way of reaching out to everyone who needs help. I try to reach out through is my website, where I present information from a caregiver perspective. The website is extensive, and full of information particularly relevant for dementia care in India. Given that many people are not web-savvy, the usefulness of a site is limited, but every bit helps.

Here’s the frightening fact: the numbers are daunting. home care is the key for dementia care in IndiaThere are, as per estimates in the Dementia India Report 2010, 37 lakh dementia patients in India, and there are only 10 day care centres in India, and only 6 respite cares, and most have very limited capacity, typically 10 to 20 for day cares, and less than 100 for respite cares. Home care is what most caregivers will end up doing.

Given this, it is perhaps good that not everyone is looking for day care and respite care, because there is a limit to how many people can be helped through such services 😦 On the other hand, if more people are aware of day care and respite care and demand such services, I hope it will result in more such facilities will be created.

But for now, there is no doubt that we have to find ways to help caregivers with home-based care for dementia patients. The arithmetic demands it.

I request anyone reading this page to think of tangible ways to help home caregivers. Maybe you cannot do it yourself, but if you write what you think, maybe someone else will pick it up…

As I said earlier, I began my data analysis on March 15,  based on 17 responses received till then.  I will analyze the next “batch” of responses after the next tapering off, or I’ll never get this post complete.

Please share any thoughts you have (as comments here, or by writing to me).  I look forward to hearing from you.

If you are a volunteer who wants to help family caregivers of persons with dementia, please also check out the following resource : Resources for volunteers helping caregivers which discusses in detail the areas where help is needed, including areas identified in the Dementia India Report 2010 (listed on this page: Learn about dementia and select your areas of volunteer work)

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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 Where dementia caregivers in India need help

  1. Shikha Aleya says:

    Thank you for this, the findings clearly point to possible ways forward. They are also corroborative of the possible implications based on responses to our Caregivers Survey. It appears that whether caregiving takes place in one set of circumstances or in another, the needs are the same.

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

  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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