Dementia prevalence, life expectancy, population pyramids, and playing around with graphs and scattered numbers; also, some sundry thoughts

I recently chanced on a newspaper article lauding Bollywood for spreading awareness on “rare” diseases, lumping in this so-called “rare” category genuinely rare diseases like progeria with widely prevalent problems like Alzheimer’s Disease. And I thought, maybe this reporter did not know about Alzheimer’s before watching “Black”, but surely we cannot call a disease rare just because we may not have heard of it!

See, poor awareness about a disease/ syndrome is not the same as low prevalence. A disease may be occurring often and remaining undiagnosed, or perhaps people do not talk about the diagnosis because there is a stigma attached to it; that does not make the disease “rare”, though awareness definitely needs to be spread.

There’s a tragedy happening when a commonly prevalent disease remains undiagnosed because of poor awareness. We add to that tragedy if we call the disease rare, because to call it “rare” diminishes alertness about a disease. Most of us may read an article on a rare disease with curiosity, but assume it is exotic and only something very few get (always “others”, never we or our close ones). Labeling something rare seems (to me) counterproductive to awareness drives.

The newspaper report I mention above started me in a rather disjointed gathering of diverse data and numbers that I have not yet managed to organize mentally, but hey, this is a blog, not a paper, so here goes…

Let’s first knock off the bundling of progeria and Alzheimer’s into one group. Wikipedia’s page on progeria informs me that there are 80 cases worldwide for progeria (1 per 8 million live births). On the other hand, the WHO and ADI report of 2012 (Dementia: A Public Health Priority) estimates dementia cases worldwide as 35.6 million (35,600,000) which is 0.5% of the world population, and most of these cases are either pure Alzheimer’s or mixed dementias (that include Alzheimer’s).

Also, on what is “rare” as a disease, here are some definitions (from this site )

  • A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

I hope that finishes off my explanation of the error in using the “rare” label for dementia or Alzheimer’s.

Onwards, then, to other thoughts on numbers and stuff.

Read the full post here

Confused, disoriented elders who wander: what can be done, and a video with tips.

A few days ago I heard of an incident that had an unfortunate hum of similarity with many such incidents one hears of: an elder was found dead in a lake near his home; he had probably slipped in, but no one really knew. I was told, “He had been wandering for months. What could they do!” The way of speaking implied that such tragedies are inevitable once someone begins wandering.

We’ve all heard stories of some seniors who start getting confused and disoriented as they grow older, of their wandering off looking for homes demolished decades ago, looking for people and places that no longer exist, wanting to do things like go to office when they have retired years ago. We’ve heard of such wanderers being found after a few days, injured, starved, clothes tattered, with no one knowing what happened in the interim.

We’ve heard of families still waiting for the wanderer to return.

And that occasional sentence, What could the family do! uttered as a statement of hopelessness, and not as a request for suggestions.

Yet, while the tendency to wander may happen, wandering and tragic consequences are not inevitable. There are things that can be done.There are ways to reduce the chances of such wandering, and there are ways to improve the chances of finding a person if he/ she wanders. These are not fail-safe ways, they may not always work, but a reduced probability is worth it, no?

The problem of wandering is so common that I find it strange that we don’t have a more vigorous discussion on tips and tricks for it. Somehow, I suspect that till someone close to us wanders, we assume wandering only affects others; we don’t think it could happen close enough to hurt us. Perhaps the problem doesn’t seem immediate enough to engage us. But the problem of wandering is best tackled by reducing the chance of someone wandering, by ensuring they always carry an identity, and by having quick ways to locate people who wander.

And here’s the thing: we cannot prevent wandering if we only read tips about it after people wander. Tips must be available widely so that when an elder acts confused and seems prone to wander, family members don’t shrug helplessly, saying “What can we do if she wanders!” in a way that shows defeat. Instead, they genuinely ask around, “What can we do if she wanders?” because they know they can get suggestions and solutions.

When my mother started getting confused and disoriented enough to start wandering, I had a tough time. I tried explaining to her that she should not wander; it failed, because she did not see herself as wandering. She was trying to see who has rung the doorbell or walked past in the corridor. She had stepped out for some work, except that she forgot what it was. I would dash out to catch her before she hurt herself (she had balance problems) or got lost, and every time she would get angry at me for stopping her from what she wanted to do. (Looking back, I could have found better ways to distract or persuade her). I tried to make her carry a tag; she got angry again. Once, I asked a neighbor to sit with my mother for around ten minutes as I caught up with an outside errand; I returned to find the neighbor had left my mother alone because “Auntie promised me she would not wander.” My mother, meanwhile, had wandered.

So I started making sure she was never alone at home, and I would lock the door from inside. My mother complained to some friends who then scolded me for mistreating her. “I would not like to be locked in,” one elderly man said. “My children would not dare to do this to us.” This was after my mother’s diagnosis and I explained that she got confused, she had a balance problem, even a small accident could cause a fracture, or she could get lost. He assumed I was some control freak out to trouble my mother (too many TV serials with bad children?) One neighbor even egged my mother to sabotage my efforts and demonstrate her “independence” by walking out, so much so that my mother would sit on the sofa waiting for the moment that the door was unlocked so that she could dash out of the “jail.”

BUT: No one suggested anything I could do to reduce the wandering 😦

The funny (sad?) part is, all these persons who were critical of my (unskilled) attempts to keep her safe, all of them had known of some wandering episode of someone or the other. They knew some people wandered; they just didn’t think my mother was the “sort who wandered” even though she wandered. Because, “Auntie seems fine” or “Auntie used to help my daughter in her studies” or some such thing.

We definitely need more recognition of the fact that people who seem normal in short interactions may also wander.

And we need to get cracking on sharing tips so that when seniors start showing some confusion, some disorientation, families know of these ideas and can implement what is suitable, so as to reduce the chance of an actual wandering episode or tragedy.

An example: A few years ago, a lady wandered because of a door left unguarded for a few minutes, but the family had stitched a label with the name and phone number at the back of her nightgown, and a passerby called within minutes that he had spotted a lady wandering; she was brought back safely. One small action, one small tip, and look how it averted a tragedy! When I heard of this incident, I remembered my futile attempts to make my mother pin an identity to her pocket and her angry protests; I had not thought of stitching a label at the back of her nightgown, at some place she would not notice it.

Yes, we need these tips pooled and talked about.

Two months ago, prompted by my concern about wandering, I had prepared a video with tips on wandering, and also written a rambling blog entry about my concern for wandering here: Diverse responses, networks of concern and support, problems like dementia and wandering. Recently, I created the Hindi version of the wandering video to make the tips and suggestions accessible to a wider audience. I created the video as part of my work on dementia, but the tips would apply to any confused/ disoriented person

This, friends, is my way of adding to the pool. But information can reach families that could benefit from it only if people spread the word. It may seem like a small thing not worth doing–why bother, let others share the link–but perhaps one person you tell, one tip they employ might prevent a tragedy. Or they may get inspired and think of some more tips and share them around. It could begin a conversation, the sharing of a concern that would avert tragedies. And frankly, none of us is immune from such tragedies…

The Hindi wandering video is here: (If the player does not load, you can see the Hindi video on youtube).

The English wandering video is here: (If the player does not load, you can see the English video on youtube)

And if you don’t really believe that wandering is a real problem that it hits people unawares and can lead to tragic consequences, have a look at this presentation by Sailesh Misra of Silver Innings which includes real life examples (identities changed) of wandering episodes in India: Wandering and Missing Senior Citizens: Why does this happen and what to do then

And if persons do wander and get lost, here is another link from Sailesh you may find useful: Blog for missing senior citizens.

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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.

Read the full post here