Working for the dementia care domain: what next? (Part 2 of a two-part blog entry)

I am currently trying to decide the focus of my future dementia-related work. I have limited energy and time available for dementia work, and so I need to make deliberate decisions on where to use them. Keeping my current online resources usable and relevant needs some ongoing effort (content updates, back-end maintenance etc.) and I also have to tackle queries I get, but where should I put my additional time and energy? Should I improve these existing online resources by adding similar content or enhancing existing content? Or should I work on something different?

(This is the second part of a two-part blog entry: The first part can be read here: Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry))

Fact is, I have many vague, unformed ideas, and there is no way I can explore all of them (let alone implement them all). I would like to make choices where I may be effective. And what is effective? I’m not sure how to define or determine that…but I assume effective choices will be the ones that create useful artifacts and efficiently use my skills and suit my personality. So here is what I know about my way of working and thinking.

I am an introvert and am most productive when working at my desk, doing intense work. I am not a socializer by nature. While I meet people and participate in events sometimes and enjoy such meetings, they also drain me. My choices need to exploit my ability to do concentrated work alone, and cannot depend on my “networking” or creating organizations or services or working in large teams. I am unambitious and don’t do well under pressure or targets. I can’t stay sane and productive in a competitive environment.

I want to remain focused on creation of content about dementia and care, suitable for persons in India. I am talking of content that can be directly understood and applied given our culture and context in India, and content that uses Indian metaphors, examples, language, etc. My experiment of creating material and the viewership tells me that this is a worthwhile target, with special mention of material created in Hindi, which has had over 30,000 views. Unfortunately, I don’t know of others who are convinced enough about this to actually actively create such content (usually, they refer people to a few well-known links from different countries without reading the articles/ manuals they are recommending). All this makes me feel I have even more reason to work in this area I consider important.

I believe technology is under-exploited for spreading information and providing support. I’m not an expert in technology, but I’m not afraid of it either, and I don’t hesitate when it comes to learning more about possibilities or implementation. I have picked up whatever technology I have need for my work so far, and am not scared by the thought that I may need to explore more technology options for some ideas I have. The potential of technology excites me and fascinates me, and is definitely something I’d consider while looking at options.

Productivity and effectiveness are major criteria for me. While I am willing to write and create material, I am a slow writer, and so I need to be careful about which writing projects to pick up. It would be silly to start something that requires several months unless I am sure I can do it, and that it is a better project compared to my other options. Making effective choices was not a major criteria in earlier days when I had no experience about such work, and not many ideas. But now I have many vague ideas and need to carefully select which to pursue.

I need to either locate a peer group or find some other way to brainstorm and evaluate ideas. So many things need to be done in the dementia domain that I cannot pick a random flavor-of-the-month are of work every month. Choices matter. Idea generation is not enough; I need good ways to perform idea evaluation and selection.

Over these past years, I’ve been in touch with many volunteers and wannabe volunteers who seem interested in dementia or caregivers or both. Usually, though, dementia is not their prime area and their approach is typically based on extroverted, networking-based solutions. They focus more on areas like “active ageing” and may even dilute or remove their overwhelmed-dementia caregiver focus over time. Some work in so many areas that I’m not even clear what their focus is. Understanding, measuring, or improving effectiveness is often not a concern. This means I do not have enough in common with them to discuss/ exchange ideas for my kind of involvement, as I focus only on dementia care.

Ideally, I’d like a reasonably-sized peer group of like-minded persons to remain motivated for my work and to discuss my ideas, joys and frustrations, but I have not yet found this group. I do have some friends with similar values, but they are scattered, not working in my focus area, and busy with their own initiatives and ideas. I can no longer assume I will manage to find an active peer group, and this lack affects my ability to process my ideas and act on them. It affects my pacing. I have no idea how to fulfill this gap.

I need enough time and energy for other (non-dementia) activities to get the emotional satisfaction I need When I first started blogging, I did that as catharsis, but as I increased my work and began actively helping others, I assumed I would get ongoing satisfaction and friendships. That’s not quite how things turned out. While I’ve had some interesting interactions and friendships with caregivers, our paths start diverging because I continue to work in dementia and others move on to their own areas of priority, leaving fewer areas of common interest. Interactions reduce over time. And while I am in touch with many concerned persons/ volunteers, again, most of them have very different interests and priorities and we don’t have enough depth of interaction for these to satisfy my need for intense friendships and emotional connection.

Dementia is not a cheerful area to work in. While some changes can improve the quality of life of the person with dementia and the family, there is an inherent downer in seeing someone fade out, stop responding, die. There is loss. There is grief. There is helplessness. Suggestions can make some difference, but the basic nature of the problem remains. People don’t contact me to share any good news; they contact when they are overwhelmed, stressed, unhappy. I find it frustrating to repeatedly see families face the same type of problem. I know how little the current support is, and how slow the rate of improvement in support systems and facilities is. While I feel some satisfaction when my suggestions and work are useful to others, this is overshadowed by my sense of helplessness and frustration. As this situation is unlikely to change, I need to spend time doing other (non-dementia) work or activities so make me feel connected and emotionally satisfied. I need to factor this in while seeing how much time I have available for dementia work.

Given my overall time/ energy availability, I have to choose whether to continue work to enhance my existing body of material, or whether to pick up some different type of content preparation. My impression right now (and this may change) is that my existing body of work can continue to help people so long as I do ongoing maintenance on it. It is reasonably complete as a unit of information for my target profile. (Some links to my existing body of work and recent viewership data are available here)Adding more material to it would be nice, but I believe I have reached the point of diminishing returns when it comes to investing time and effort in expanding my existing body of work. I am therefore interested in exploring whether I can work on a different, important area. However, I also need to remember that it takes me a lot of effort it to overcome self-doubt when venturing into any new area; any new venture/ project I consider should seem worth that emotional cost.

In my opinion, the most important aspect to address is dementia awareness, because awareness is pathetic in India, and awareness is the foundation on which everything else rests. I think we need ways to spread awareness about dementia amongst people who are not looking for information on dementia, and we need to reach out to multiple cross-sections of society. I am interested in seeing whether I can contribute to increasing dementia awareness. However, typical awareness campaigns include advertisements, walks, celebrity involvement, speeches, etc., and my personality does not match the skills needed for any of these. So my challenge is, can I contribute to spreading awareness given my personality and skill profile? Can I, as a self-funded solo worker, do something?

My current, tentative plan is letting myself freely think about potential areas of contribution rather than staying within some conventional framework. I’ve been using technology, specifically, the Internet, as a means for contributing for the last several years; developing material and making it available using the Internet also suits my personal work characteristics, and maybe, just maybe, I’ll find a way to extend this to work on some new area I consider important (such as dementia awareness). Maybe a few months down the line, I’ll have some idea on what to do.

And of course, if you have any suggestions that seem to fit my basic personality traits and my inclinations, please share them.

(This is the second part of a two-part blog entry: The first part can be read here: Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry))

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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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