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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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.

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

  1. PM says:

    I had visited the Vimhans Day Care Center (part of the hospital) in New Delhi a few years ago. It was in the basement, and it was around the same time of the year (winters), and I found the spaces obviously cold. The lack of spillout spaces for the patients to sit in the sun was also evident, and discouraging.

    As for the facilities, they wanted all patients to be with attendants (if the patient was unable to manage on one’s own). Since it for people who are mostly elderly and / or with some neurological disorders, I don’t see how the attendant could be avoided. One can send one’s own attendant or hire one at Vimhans. Also the food, refreshments would also have to be packed and sent daily. It seemed like a grown-up version of a children’s day care. There were physical therapists at hand- for yoga and other group activities, From my view point as a caregiver, my patient was in no condition for group activities. He shunned company, and wanted to be left alone.

    I didn’t think it suited my purpose at all. Had I been working and could not look after the patient through the day, then perhaps, I might have considered it. But familiarity and my knowing what the patient needed on a day-to-day basis was the reason I was at home, not working. Also, there would be no way of knowing whether the attendants would do well without supervision, in which case, keeping him home, and supervising the attendant(s) 24×7 served me better.Also, the cost factor- one was already paying for the attendants at home, this would be an additional cost.

  2. NN says:

    I met some volunteers from my city and talked to them about Amma. I wanted to know if I could do anything more for her. They said I should send her to their daycare, so I looked around. The stairs were narrow and difficult to climb. The rooms were big, but each room had 3-4 patients and the toilet was down the corridor. My Amma never liked meeting people. She was like that even before her dementia. She only likes meeting very close friends. She feels very self-conscious in front of others. She feels ashamed if she cannot do something very well. She does not like being treated like a child. She is very particular about her food and how hot it has to be when served. I could not imagine her spending her full day with so many people around her all the time. She could not have done that even before dementia. I told the volunteers that. They did not believe me.

    I was very upset at how the volunteers spoke. They talked as if I was a fool and did not know what was good for my mother. They spoke like I was being bad to her by not sending her to their centre. I told them they had not even met her, so how could they know? But they said they know what patients are like, and what they want. I am 50 years old. I have lived with my Amma all my life. They talked like I knew nothing about my Amma.

    They acted like they are the greatest persons on earth. One girl said she was a volunteer because she wanted to make sure families don’t neglect elders. Another girl who must be 25 kept talking about an 80 yr lady as if that elderly lady was a baby. She called her “my daughter.” That sort of talking would make my Amma really angry. She is very particular about being respected for her age. She cannot stand it if someone by mistake says tum instead of aap. If someone called her beti I am sure she would feel very insulted.

    They kept saying I should send Amma there as though Amma was a parcel to be posted. They thought it would be simple to get Amma ready every morning and send her. They did not think of how tiring 2 hours travel every day would be. My Amma is not a toy. She often says no to things. She does not always get up early. I don’t think those volunteers have ever looked after someone at home. I don’t believe they can look after patients if they can’t understand even this much.

    Maybe daycare is okay for patients who had lots of friends and lived in big families and now feel alone and want company. Maybe family members need it if they have to go out for work. They need a reliable place to leave the patient in. But for people like me we want to make our parents happy at home. Give us good helpers who can make our parents happier at home, because Amma is used to home and relaxed and happy here.

    • PM says:

      I agree with NN. What is needed are helpers/ attendants who are properly trained and professional, and can look after patients in their homes, as familiar surroundings definitely add to their comfort.

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