Diverse responses, networks of concern and support, problems like dementia and wandering

Thought I’d use this post to ramble about some things I’ve observed related to wandering adults and to share my thoughts on how diverse the responses and actions of people are, and how many of these responses together can form a network of support…. and my own response, of course 🙂

What does one do when one hears of an elder who has gone missing, most probably because of the confusion caused by dementia? At what threshold does concern become significant enough to act, and how do different people respond?

I’m not talking of people who begin criticizing the family for neglect, because that is not “help.” I’m not talking of persons who claim it is “karma” and something the family is destined to bear, and therefore don’t think of helping.

I’m talking of persons who are concerned.

I’m talking of all those persons who pause, feel that twinge in their heart, that sense of “ouch” when they hear of an elder who has gone missing. Persons who feel the family’s pain, and worry about the elder’s bewilderment and wellbeing. Maybe they feel this way because they have experienced wandering episodes with a parent or another relative or friend or the parent of a friend or neighbor, and can connect with the fear and agony. Or because they are anyway able to empathize and can imagine the horror of the situation. Or perhaps they are volunteers and committed to the cause of supporting elders and patients and all that. What do these persons do when they hear such news?

Most people would pause to read it, feel bad. Some would look carefully at the photograph, but I’m not sure how many would note down (and put in their wallet or handbag) the phone number to be called in case they spot the missing person, and I don’t know how many would remember the name of the person, or the particulars. Maybe if the elder has gone missing in the same city, they will be more alert, more ready to act.

I do not know how many would call out to the rest of the family, friends and colleagues to make them read the article and memorize the details, though…Or print it out and circulate it in the neighborhood…

I am not sure too many will actually take out their two-wheeler and go for a drive in that general direction and start looking.

However, I think, that many people would consider forwarding the link on social networks. That’s a click or two, and many would do it, and the persons they forward it to will forward it further and so on. One such person may spot and recognize the missing elder…

So people may spread the news, but how vigorously they do it would vary widely.

When talking of general solutions, some people, in forums, mention radio or GPS devices that help, but the degree of detail they know or share vary; often, details are not available, so things remain at “theory” level. Some persons share links to articles on wandering, and what families can do.

And then, sometimes, some persons who are deeply concerned act a further step. Some threshold gets crossed, and something is just begging to be done, and someone takes the initiative.

Towards end November, 2011, Mumbai-based Sailesh Mishra of Silver Innings started a blog to feature missing senior citizens, to help spread information that could facilitate tracing of missing elders. A simple, visible, and effective idea. (His blog is here: http://missingseniorcitizenalert.blogspot.com )

My concern about wandering dementia patients dates back to years ago when my mother wandered, all my attempts to prevent it, and the poor availability of tips and support. And all the wanderings I saw around me, too. In one instance a neighbor’s mother wandered off (in the few minutes a door was left unlocked) and I vividly remember the tension that family underwent till some kindly passerby spotted that lady (whom he recognized as a fellow-Kashmiri) and suspected that she was confused and lost, and not just took her to a police station but also spread the word within his community providing her description and the name of the police station he had deposited her in. I have, over the last few years, heard from several caregivers about their individual encounters with the trauma of a wandering patient, the hell they went through for hours till ultimately, it would be one concerned person who spotted and acted, or a chance visiting card pushed deep in a pocket that helped the police locate the family, and so on.

I have also heard of patients who were never found…

A few years ago, when I started blogging, I blogged about the wandering problem, with tips and so on, in considerable detail. When I later set up my website, I provided detailed coverage to wandering on a page on special tips (it is here: Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning).

But people don’t read webpages that often, and when I saw the spate of missing persons highlighted by Sailesh, I wondered what more I could do.

Now I am not someone running an organization. As I keep saying, I work in my own office room, and focus on creating resources for others. I started thinking, what sort of thing could have helped me back then, when my mother was prone to wandering. Something applicable to India, to settings familiar to us.

An idea started forming in my mind.

It is easy to get ideas, but difficult to implement them. I let the idea marinate for a while, as I realized with horror how much work it would involve. I had thought of making a video (videos being friendlier than text-filled web pages) but I wanted to make a video that was not just talk or text-filled slides, and that meant using various software tools and learning multiple skills. It seemed too much work. I had done a video before, but the amount of technical skill it needed was nowhere what this seemed to require. Then I consoled myself that once I learn these skills, I could even use them for more videos, so let me take this as a sort of trial project…

For the past few weeks as I learnt, made mistakes, undid and did things, I made sections of the video, discarded them, made them again, discarded them again. This was far tougher than what I had tried a few months ago (described in another blog entry). I had no real model for designing an effective video, at least not for a video of the sort I wanted to make, and I had not realized how much planning and graphics it would need, and how tricky editing audio and video could get, and the work just kept stretching. I was barely attempting the top of an iceberg.

Two days ago, I finally had on hand a prototype video that was far from perfect, but at least it was complete. As I viewed it on my laptop, I could see many things I could have done better or differently…and I was tempted to get back to the drawing board. Maybe it needed a few more weeks and I would get a better video.

…But then I paused….

There is a phrase I’ve often heard quoted amongst writers who never submit their stories because they want to do one more edit round…

…a phrase that says, “Perfect” never finishes…

I asked myself whether the video could help someone in the as-is state, and the answer was, perhaps. At least it may prompt some discussion, or get someone else fired up into making some better wandering related resources for family caregivers.

Besides, even if I spent two more weeks, there was no guarantee that the end product would be slicker. I may end up wanting another two weeks after that, ad infinitum.

The other way to look at it was, I could anyway upload a new version later. (Or I could move on to making some other video and practice my next set of improvements on that.)

So I loaded my video on youtube, added the closed captions, and made it “public.”This, then, is my way of expressing my concern for the problem of wandering in dementia, my bit towards the challenge that families face. The video is in English, and there was no point holding it back till I got the time to do the Hindi version. (If the player does not load, you can click here to see it on youtube)

P S This is a 20 minute video, and I should have been happy that I managed to do everything it needed (scripting, drawing, audio, video, editing, whatever) even though I had no experience and had to learn tons to get it through—and it is a measure of my state of mind that I actually slipped into a somewhat blue mood because I realized I’d lost the ability to notice completions and to celebrate them. And that is what I ended up blogging about yesterday instead of talking about the video 🙂

Links referred to above:

Edited to add:Subsequent to making this post, I have created the Hindi version of the wandering video. It is available at: Dementia mein bhatakne aur khone ki samasya)

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages: https://swapnawrites.wordpress.com/about-contact/

One Response to Diverse responses, networks of concern and support, problems like dementia and wandering

  1. Pingback: Confused, disoriented elders who wander: what can be done, and a video with tips. « Swapna writes…

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