Dementia day care centres: criteria caregivers use to avail such facilities

I’ve often bemoaned the fact that we have very few dementia-specific facilities in India, but it’s probably time to write about the flip side of the problem: that some dementia day care centres remain underutilized and volunteers from such centres say they don’t understand why families hesitate to use day care facilities.

Before I continue, in case you are unsure what a dementia day care facility in India may be like, here are some interviews I did a couple of years ago (the information may be different for other centres and may have changed even for the centre these interviews refer to): Care in a dementia day care centre: a social worker explains and Taking dementia patients for outings: a volunteer shares his experience.

I’m writing this post to gather input from caregivers in India about their thoughts on using dementia day care centre facilities for the persons they are caring for. My questions: What criteria have you used/ could you use to decide whether or not to use a dementia day care centre? What are the pros and cons as you see them? How would you evaluate a centre, or its suitability for the person you look after? Would the location matter? Would transport matter? What sort of facilities do you expect in the facility? What sort of things there would make you so uncomfortable that you won’t think of using it? how would you decide whether the facility would suit the person with dementia? What sort of payment would seem reasonable to you? Are there other factors (like comments by family/ neighbors, etc.) that may affect your decision?

And, at a more basic level, do you think a dementia day care centre can add any value to you and/ or the person with dementia who you care for?

(Of course, if you have used a day care and have comments on what helped and what didn’t, that would be great to know, too)

I must admit here that I did not use a day care facility for my mother; my decision was based on my mother’s needs and personality and not so much related to the facility I evaluated. On the other hand, I know families that have been very happy using day care centres. I also know families that withdrew the person after a while, for various reasons. I’ll probably write more about these in a later post; right now, I would like to gather more information from other caregivers on their opinions and thoughts about day care facilities.

We need to share thoughts and data on this because we want dementia-specific facilities. If we want day care centres, but existing centres are not good enough, our data may help improve existing services or set up more suitable ones. And even if the services we want are different (like respite care or caregiver training or supply of trained attendants), we must remember that if entrepreneurs get discouraged by the response to their day care centre, they may decide against offering other services which we want.

Looking forward to your comments (Remember, you can post anonymously. You can also write directly to me).

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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.
Read the full post here