Dementia In India, 2015: An Infographic

Information on current dementia prevalence in India and future estimates are published in various national and international reports and papers, as are discussions on the problems faced and possible actions. However, most such reports are long and dense, and reaching the relevant sections is not easy. As part of my content creation work, I have put together some salient points from across these in the form of an infographic that is quick and easy to read.

The infographic is uploaded on Slideshare and can be viewed in the player below (or directly on Slideshare at this link).

The slideshare link as well as the player above include options to share the infographic.

You can also view the full infographic on the Dementia Care Notes site at Dementia in India: An overview. The page includes various ways to share the infographic or include the code on your site.

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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

Silver linings, budding seniority, dyeing choices

I must admit that part of my week’s obsession with ageing problems and support is that in the month of December I was called a senior citizen twice. I am a number of years short of that landmark, and the comment made me bristle, not just because it bumped up my age (something which even an elder-respecting society does not consider a compliment) but also because of the attitude with which those words were said…sort of, all is over for you, Ma’am, and so anything you do is unexpected and like a miracle. It was so dismissive and patronizing that it bugged me.

It made me wonder how I’d feel once I did cross the age of 60 and heard the word applied to me in that tone, knowing that the appellation was factually correct. Anyway, why should a particular age matter so much, and why should it be such a way of judging people? Are the Govt concessions connected with the age worth that aura?

I have, of course, only myself to blame for being taken as a senior citizen before I have reached that “silver” age threshold.

For one, I am not dead. If I had died when younger, I would have died wrinkle-free and black-haired, without having the word “senior” applied to me.

But, you know, I would rather be alive and senior, than dead and young.

Read the full post here

A nuclear family sans elders, blissful ignorance about ageing and elders, rude awakenings

While I continue mulling about ageing, here’s a confession about my blissful ignorance about ageing and dying as I grew up in a nuclear family, just my parents and I, and then moved over to my own nuclear family with my parents nearby. Truth is, right till I was almost forty years old, I never spared a deep-enough thought towards ageing or death. Not that I imagined that people lived forever. I knew people died, I even knew they got frail and dependent and fell ill, often more so if they were older, but I never thought of how it impacted them or their families and all that.

I’ve learnt stuff since then, though 😦

My mother’s parents died when she was very young, as did my father’s mother; my father’s father (whom I called Baba) lived with his stepdaughter in Delhi because my father was on postings outside Delhi. Baba would visit us for a few weeks every year, a frail man who carried a cloth bag full of Urdu and Persian books when he went out for long walks. He did not have anything much to say to me. For those few weeks when he was visiting, home would seem somewhat different, but not by much. He was in good health, and except for his habit of smoking the hookah, there was no oddity of his that I noticed too much.

When my father finally got posted to Delhi, I remember this discussion on whether Baba would want to move in with us, but Baba wanted to stay in Delhi 6 with his cronies nearby. My contact with him was this once-a-month visit when my mother would drive down to Turkman Gate with me, and Baba would come to our parked car by rickshaw and she would drive him home for lunch with us, and a few hours later, he would be dropped back and all would be normal again for him and for us. Then he started falling ill, and his visits reduced, and then he fell more ill, and there was talk of whether he should now be looked after by his one and only son, my father. Read the full post here

Negativity, projections, ageing, and some facts behind a story

Some more memories of my parents and ageing, and the people around us. This blog entry is about how my father, once known for his sense of humor and cheer, was used by a famous writer to depict negativity in her novel, and how I feel that the writer projected on my father her own negativity about ageing and ignored her role in it.

Over these last two decades, I have begun suspecting that most people don’t know how to interact with peers who are unwell and disabled; they mess it up, their discomfort/ disapproval is obvious, and then they go away blaming the unwell/ disabled person implying that they would have coped better with the situation when in fact they were unable to cope with even ten minutes of an interaction.

Anyway, down memory lane…

One of our neighbors was a well-known writer and also an acquaintance of my parents. They shared some close common friends, and this lady would drop by sometimes for tea or for an informal chat. Then my father fractured his hip, and we went through two years of his being bedridden, improving, getting worse, and so on, till he finally passed away. This writer visited us a few times, and I would also meet her in the apartment complex sometimes, exchange a few words. Just social.

Sometime after my father’s death, a neighbor told me the writer had written a new book, allegedly fiction. Many of the characters in the book were from our apartment complex, and recognizable. She’d talked of the small things people consider private. She’d implied things. People were not happy about it. “You’re in it, too,” this man told me. “You and your husband and your mother and your father and his illness.”

I froze in shock. Read the full post here

Active, visible elders, and inactive, tucked away, hidden elders

This is about some thoughts triggered by a senior citizen event I attended, where the hall was full of articulate, well-dressed, energetic elders (some came with younger relatives), all animated and social. My first response was a general happiness, but that feeling was short-lived as I was swept away almost immediately by a tremendous surge of loss because I thought of my mother, who had been such an intelligent and energetic person, and I wondered how our lives would have been if she had not developed dementia. Some weeks have passed since that function, and I have had time to mull over that experience and my response to it…

As I shared with some online caregiver friends immediately after that incident, I was so swept away by the sense of loss that day that tears prickled my eyes and I had to blink them away. I could not concentrate on watching those senior citizens accept prizes and sing and all that; I could only think of my mother and the past several years. I remembered how she (as my re-examination of past clues shows) had started experiencing the dementia gaps and setback well before the diagnosis, and had started withdrawing, hiding, covering up, raging, suspecting she was going crazy and therefore blaming everyone….trying to view those years as they would have been for her was terrifying.

I left the function early and could not get rid of that horrible pit in my stomach for a few days. I thought I could then understand why so many people have problems understanding that my mother’s problems are genuine; they have seen “normal” ageing, and want to think everyone ages that way, and I wished I could slip back into that comfort of normality but alas…

The sadness I felt for was not just for my mother, it was also for myself, and for everyone who experiences this loss as patients, as family….

Read the full post here