Resources for dementia care volunteers now available online

In January this year, during my blogfest, one work area I identified was: Design a simple and structured way for dementia care volunteers in India to access relevant documents and resources created by me without their needing to contact me..

Over these past few years, while trying to help other caregivers and during my interactions with like-minded volunteers/ caregivers, I have  been preparing various documents and wishlists; I have always shared these openly with anyone who contacted me and seemed interested. These persons could use the ideas and information that helped, and ignore the rest. They could also give me feedback that I could use to improve the documents.

Around December last year, I realized that my existing modality of sharing was not sturdy and effective because it depended on chance contacts and was time-intensive. I must also admit that, being a social recluse, I am intimidated at the very thought of scaling up my availability for person-to-person contact.

I finally created a special section aimed specifically at sharing resources with volunteers working in dementia care in India: Resources for volunteers helping caregivers.

Here’s my intention: whenever I create a document that I think could be of use to other volunteers, I will add it to this section, either in an existing page of the section, or by creating a new page. This could be a wishlist of areas that need work, a document explaining dementia home care in India, or a document with my ideas on how to actually provide a service. Whenever I create a blog entry that is specifically relevant (in my opinion) to volunteers (and is not just a hodgepodge of ideas) I will add a link to the appropriate page in this section. I am leaving comments open for people to add their feedback or other links they find useful.

This section contains my views, opinions, documents. I am not an expert in any way, not even someone with an NGO or a trust or any qualifications as a volunteer. I am just a caregiver who developed a commitment to help other caregivers. I am just someone trying to do whatever I can, and share whatever I think and do, as honestly as I dare to. I undertake no implicit or explicit guarantees that the documents I am sharing are relevant or will help; I am creating this section because I strongly felt I need a space for such document sharing. How others use them is for them to see. Of course, I welcome feedback.

Take, for example, the setting up of support groups for caregivers. We so desperately need such groups. Around the middle of last year, I had drafted a document for creating caregiver support groups for a volunteer body, and then, a few months later, amended that to fit “dementia” caregiver groups for another person keen to set up a group. I know of at least three other persons who have wondered whether they can set up a support group, and what would be involved. There may be many more persons thinking of this. Now, the draft document I have created is available for anyone to read and use as fit, send me feedback, whatever. If someone sends me more ideas, I’ll amend the draft as suitable.

The section is intended for volunteers who want to equip themselves to understand and help dementia caregivers in India, and includes discussions on the status of dementia care in India and the impact of culture and context.

Pleave have a look or share the link with anyone who you think may be interested. Thank you!

[And that’s one item off my to-do list 🙂 ]

(Edited in February 2013: When this post was written, the resource section had been created on my personal site. I have now shifted the section to this blog as part of a consolidation exercise, so that all my experience and opinion-sharing related to dementia is now at one location. The links in the post have been corrected to reflect the correct links)

Edited in 2014 to add: The current pages in this section are as listed below:

Resources: If you want to help caregivers/ spread dementia awareness

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Understanding dementia home care in India

Almost one year ago, a very dedicated volunteer told me that though she tries her best to help home caregivers, she sometimes wonders whether she can ever understand them enough to help them. She had been facing problems with staff who would not understand what dementia was, and would quit at the smallest “difficult behavior”, and there were days she felt driven up a wall herself. She just couldn’t imagine living with and coping with a patient all the time, the way family caregivers did.

This volunteer told me that while she gave family caregivers what she felt was appropriate advice and hoped it helped, she felt diffident about it at times.

Being both a caregiver and a volunteer, I am often able to connect with the situation and challenges of home care, because even if I have not faced some of the problems others talk about (and boy, there is a wide range of problems out there), I can extend my experience to imagine it. This volunteer’s comment made me realize that perhaps I should do something about this gap of understanding that non-caregiver volunteers experience. I also realized that when some volunteers ended up sounding preachy, insensitive or critical, they may just be naïve and ignorant.

Anyone who has brought up kids would know the difference between handling a child 24 hours, through illness and tantrums and soiled clothes, as against playing with them or babysitting them for a few hours in a neighbor’s house. Things always look different in short, controlled situations from which one can opt out.

Most volunteers who advise home caregivers have never worked as attendants/ caregivers in a respite care on a 24 hour shift for a few days consecutively… Most have never had to stay awake day and night and clean a soiled person who is pushing them away and shouting at them in the middle of the night…(maybe volunteers should go through such experiences, though, it would make them so much more effective as advisors)

Anyway, prompted by the comment of the above-quoted volunteer, I wrote a short note to describe what dementia home care involves (my original draft was five times this length, but I reduced it to keep it at a readable length). I think anyone in contact with home caregivers may find it useful to get some idea of what caregivers are experiencing.

Read the full post here

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.

Read the full post here