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.

Tiny digression: The problem with numbers is that they often don’t hit as hard as actually knowing someone with a disease. A long string of zeroes at the end to a prevalence number doesn’t often make the number’s vastness hit emotionally quite as much , don’t have quite a same impact on us emotionally as an anecdote of an uncle of a cousin’s brother-in-law’s friend’s sister. An admission: Take the well-known story about how the man bankrupted a King of everything by asking for rice (wheat, if you prefer) grains on the chessboard to be doubled for every square. (Wikipedia explanation here) I admit that howsoever many times I try, I fail to mentally grasp the sheer exponentiation of the numbers in terms of the growing mound of wheat/ rice grains for each subsequent square. Higher than Mount Everest! Oh heck, I cannot truly imagine Mount Everest either.

I may not be alone in my emotional limitation in imagining large numbers. I’ve read that this related to how our brains are wired; maybe we didn’t have to cope with neighborhoods having 35 million tigers ready to pounce on us. Or if we did, we didn’t stop to count them before we sprinted to save our lives

So I think that expecting people to grasp the impact of something by quoting large numbers is not the same as finding ways to make the danger hit viscerally…The former is for policy makers, the latter for how I view people around me and also my choices related to the risk factors of a disease.

Ending the digression, and returning to dementia….

First, the impression of many persons in India that dementia and Alzheimer’s do not happen much in India. The Dementia India Report 2010 estimated 37 lakhs (3.7 million) cases in India (the population of India is around 1.2 billion); this puts dementia cases at a rather low-sounding 0.31%. Compare this to USA, where, in a population of around 312 million people (source: Wikipedia), dementia estimates are around 5.4 million (source: alz.org.), a much higher percentage of 1.73%. To many persons, these figures provide a smugness that we in India are relatively safe from dementia, and I’ve heard people credit this to diverse reasons like our eating haldi (turmeric), having a good “culture”, caring for elders, having joint families, having some genetic protection, whatever.

Broad numbers, seen without understanding the context, can mislead, though.

Now let’s see how our view of the situation changes once we add some more data to the mix: life expectancy in various countries. (Wikipedia page here). Life expectancies are easy to glance at using this image above. (The image from Wikimedia Commons, kindly released by its creator under a Creative Commons Attribution-Share Alike 3.0 Unported license). The wikipedia page informs us that in India the average life expectancy is 64.7 years for someone born today (63.2 for males, 66.4 for females). Compare this with life expectancy of richer, “developed” countries like USA; the USA life expectancy is 78.2 years for someone born today (75.6 for males, 80.8 for females).

Combine this information with some information from the WHO report on dementia which explains that only between 2 to 10% of dementia occurs in people less than 65 years, and the bulk of the cases occur in people over 65 years of age. (The Report, Dementia: A Public Health Priority can be downloaded from this link). What’s more, as people grow older, the chances of their developing dementia increase rapidly (prevalence is said to double with every five years increase in age after the age of 65).

With all these additional pieces of information, the low figures from India start getting another possible explanation: perhaps many Indians die before they can get dementia. And even if there are differences in incidence across countries, these may not be as dramatic as people expect (hope?) they are. There is also the aspect of under-reporting/under-detection of dementia.

I don’t think that we in India can continue to feel smug about our current lower prevalence rate…

Now consider this: as a nation improves its health initiatives, life expectancy goes up. Here, play around at Gapminder graphs by selecting life expectancy and moving the year slider and seeing how the expectancy has kept going up in all countries around the world over the years. I expect that will continue (and I am sure we all want that) and that, over more years, people will start living longer in India. And as they live longer, their chance of getting dementia will go up, and the illnesses that pose threats (causing disability and death) will change.

An interesting understanding of how income of a country matters in the way people there live and die can be seen by looking at how the profile of diseases that people suffer from also change as the nation’s income changes..

Here, for example, are the WHO tables on ’causes of death’ in 2008, categorized by “income” of the country. We can see how the causes change with the income of the country. As nations manage to reduce tragedies like infant mortality, deaths from diarrhea and other infectious diseases, other diseases rear their head and become matters of concern.

• Low income countries: Lower respiratory infections (11.3%), Diarrhoeal diseases(8.2%), HIV/AIDS (7.8%), Ischaemic heart disease(6.1%), Malaria (5.2%), Stroke and other cerebrovascular disease 4.9%), Tuberculosis(4.3%), Prematurity and low birth weight(3.2%) Birth asphyxia and birth trauma(2.9%), Neonatal infections (2.6%)
• Middle income countries: Ischaemic heart disease(13.7%), Stroke and other cerebrovascular disease(12.8%), Chronic obstructive pulmonary disease(7.2%), Lower respiratory infections (5.4%), Diarrhoeal diseases (4.4%), HIV/AIDS (2.7%), Road traffic accidents (2.4%), Tuberculosis (2.4%), Diabetes mellitus (2.3%), Hypertensive heart disease (2.2%)
• High income countries: Ischaemic heart disease (15.6%), Stroke and other cerebrovascular disease (8.7%), Trachea, bronchus, lung cancers (5.9%), Alzheimer and other dementias(4.1%), Lower respiratory infections (3.8%), Chronic obstructive pulmonary disease (3.5%), Colon and rectum cancers (3.3%), Diabetes mellitus (2.6%), Hypertensive heart disease (2.3%), Breast cancer (1.9%)

This further strengthens my view that we Indians should not feel smug about lower dementia prevalence rates in India yet; I think this “we don’t get dementia” comfort zone is an illusion…

Now, onwards to another set of concepts we increasingly read about: the “greying” of India. This is clearly a concern for anyone working in areas of senior care and senior health and senior abuse, and I often come across articles on numbers of how the ageing population will double or triple or whatever by year X or Y, often supplemented with numbers with strings of zeroes.

I am not sure how much these numbers hit us in ways that we remember. I think these numbers don’t fully convey the challenge awaiting us.

Just looking at the number of seniors (and how they increase over years) does not convey the gravity of the challenges ahead. Of course, we want more seniors to be there (and I hope to remain alive and be one of them). The questions are related to the quality of life of these added years and more seniors, and the structure of society and its ability to look after them.

A graphic way of considering the ageing situation and how it impacts entire societies is looking at a “population pyramid” which depicts how a population divided between various age groups (figure courtesy Wikipedia uploads; the related article is available here).

This sort of pyramid may take different shapes depending on various situations; some examples of classic shapes of the pyramid, as available in Wikipedia uploads, are shown here.

It can be pretty interesting to see how this population pyramid is expected to change over the years (or has changed over the years) for various countries. Here, if you like some fun, go to this Census site that allows you to see multiple representations. Select “population pyramid graph” from the drop down “Select Report” (it’s the last option). Select “India” from the “select country” dropdown, and then select some “year” and click the button “submit”; I suggest trying years across a range, such as 1995, 2012, 2035…or whatever hits your fancy. Note how the distribution of age groups across the population changes over the years. Have a look, too, at the population pyramid graph of some developed country, too, say Norway 2050.

Now combine this way of viewing a population with another concept: that of an economic factor called dependency ratio. Essentially, this looks at the proportion of the section of the population that is likely to be dependent and the section of the population that will support this section. The implication is that if a population has many old persons (who are dependent) and children (again a dependent section) compared to people in the “productive years”, the society will face a challenge in being able to support the dependent sections of the population while also trying to remain economically prosperous.

It is obvious, too, that it is not enough to have health schemes and policy frameworks such that people reach riper ages; older people need to remain healthy and productive and happy to the extent possible. There also need to be systems to support those who need support without soaking up all the energies of the immediate family and friends. Only then can society still have enough persons free to remain productive and prosperous. If everyone is busy looking after elders and kids, who remains available to provide services or produce goods, run administration, manage infrastructure, handle the country, do research, qualify for various professions, and all that?

(An aside: a quote from the WHO report: By 2050 people aged 60 and over will account for 22% of the world’s population, four-fifths living in Africa, Asia or Latin America.)

Okay, so now, back to dementia.

Most reports focus on the total numbers of persons with dementia in a country, stuff that is useful for policy makers allocating resources. For individuals, though, a more emotionally charged aspect is: what is the possibility/ probability for the individual and persons around that individual to be affected by dementia? Or, the possibility that the individual will have to provide care for someone with dementia. That elderly person I know, will she develop dementia? What about me? Numbers like 37 lakhs (or a doubling of that) may not impinge on their minds much as statements on the incidence of dementia as found with age, or on the impact of dementia in terms of disability and early death.

Incidence is not really well understood across countries. Studies throw up different figures, and have not been done in many locations. Dementia prevalence and projection numbers depend on combining eligible studies and on consensus figures of experts, along with demographics, changes expected across years, and plenty of assumptions. There’s a lot of scope for variation, not just between countries and genetic profiles, but also because incidence will change depending on how well people control (or slip on) risk factors, such as cardiovascular risk factors and others. Even so, available tidbits confirm to me that dementia is something to be concerned about at a personal level for any of us who want to age well. And that suitable policies and support for dementia are important to ensure that dementia patients and their caregivers be supported.

My mother had dementia. For well over a decade of my life, as I tried to support her (sometimes succeeding, sometimes only making things worse), I had plenty of first-hand experience of the challenges that dementia and its care bring to patients and their families. But when I am discussing this topic here, I am not thinking of myself as an ex-caregiver; what I am expressing are thoughts that would apply even if I had no prior experience of dementia.

Take a person who has never actually seen dementia up close. What sort of information would make that person pause to think whether dementia is a concern area? Or affect life choices in terms of risk factor mitigation or planning for future care of elders in the family? Here are some random sentences from published reports that, I think, would help the person understand and consider dementia as a possible concern area:

• Compared to other chronic medical conditions (heart diseases, cancer and stroke), AD is the fourth leading cause of death in the Asia Pacific region (quote from Dementia India Report 2010)
• According to different estimates, between 2% and 10% of all cases of dementia start before the age of 65. The prevalence doubles with every five-year increment in age after 65. (WHO report: Dementia: A Public Health Priority)
• Dementia is one of the major causes of disability in later life. It accounts for 11.9% of the years lived with disability due to a noncommunicable disease. It is the leading cause of dependency (i.e. need for care) and disability among older persons in both high-income countries and LMIC. (WHO report: Dementia: A Public Health Priority)
• One in eight people aged 65 and older (13 percent) has Alzheimer’s disease. Nearly half of people aged 85 and older (43 percent) have Alzheimer’s disease. (Alzheimer’s Report 2011, USA).
• Alzheimer’s disease is the sixth-leading cause of death across all ages in the United States. It is the fifth-leading cause of death for those aged 65 and older. (. (Alzheimer’s Report 2011, USA).
• One In Seven Americans Over Age 70 Has Dementia (Report of a study, quoted here: http://www.sciencedaily.com/releases/2007/10/071030112105.htm)

Pause, re-read these. For example, One in eight persons aged 65 and older has Alzheimer’s. Ouch!

When I look around myself, I find enough persons over 65 years,over 70 years, and I know of persons who are on their way to celebrating their 85th birthday. I am sure all of you know dozens of people in these age groups. Think of the faces of these persons who you meet and know yourself, or who you hear about as parents or grandparents of friends and acquaintances. Think of the incidence figures I mention above, and see how they hit harder now.

Remember, too, that poor awareness exacerbates the tragedy, because dementia remains unrecognized.

If you meet these persons with dementia, you may not figure out the nature of the problem in your interactions. So, well-meaning though you are, you may end up talking in ways that hurt or stress these persons. You may even believe some critical comments they make about their family members without knowing these are driven by poor memory and delusions. (It is normal and acceptable to criticize children and call them greedy and abusers and believe that elders are being mistreated, because isn’t that what all soap operas tell us?)

And this dementia may even be unrecognized by the families till it is in a really advanced stage, or not even then. Family members may get frustrated because this elder is acting strangely or wandering, and they don’t know how to handle it or what to expect. They don’t realize how this will require an increasing amount of adjustments around the elders. In spite of all the love and respect they have, and the hard work they may be willing to do for these seniors, they may end up doing things that are ineffective, or even make the situation worse.

Spreading awareness about dementia aims to avoid such human costs to patients and persons around them…

These are my scattered and initial ponderings. Prevalence or incidence of dementia, and how the incidence of dementia can impact people and society, and how it can be changed by addressing risk factors is just too vast a topic, an entire field of study by itself. I am definitely nowhere near getting even a perspective of the problem, regardless of my attempts to pore over various published reports.

But I have pored over enough to acknowledge that dementia and its care are definitely areas of concern. This blog post and its scattered data presentation was prompted by what I saw as an oversimplification and misrepresentation of a situation. Perhaps later I will muster up energy to read up and learn about related issues like disability, morbidity, and mortality of various diseases, and their various underlying assumptions….

Just one more small aside as I close…

I read an interview somewhere where someone said that people would not be so dismissive of dementia if this disease was hitting younger people. This statement struck me as a very acute observation. Possibly diseases associated with elderly, with ageing, seem less urgent to solve. In spite of our cultural respect for white-haired wisdom of elders whom we respect, we perhaps are okay with them to fade out, and to face problems well beyond normal ageing problems. We say, anyway they are old. But if we do not die off before that (and who wants to die!), we will get old, too. We will then be at the receiving end of this indifference to diseases that affect the elderly more than they affect the younger people. We may not be too happy with such indifference in the twilight years of our own lives.

That’s something worth pondering over, no?

Oh, and I would love to hear what you think about this.

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Down memory lane, one year of gathering caregiver perspectives, caregiver voices

I’m an asocial and risk-averse person, but I can be bloody-minded if convinced that something needs to be done, and so I sometimes start projects that defy sanity. That’s how I plunged into a rather hefty project around a year ago, self-directed, without any pressure from anyone but my own stubborn nature. It happened when I got sick of rummaging for dementia care stuff directly applicable in India, because though the Internet abounds with information on dementia, and also on its care, and there are plenty of books, too, most of these are designed for a different cultural context.

I wanted more tips that could be used here, in India, with terminology I could relate to, more examples, more situations. Stuff that took into account the abysmal awareness about dementia in India, and the lack of institutional support. Stuff that suggested resources available in India, or in Indian languages. Most of all, I missed the voices of fellow caregivers–their stories, their struggles, their successes. The community that remains hidden in shadows.

And so I created the Dementia Care Notes site.

Of course, there was no way I could say that anyone would bother to visit my new site. How would people know it existed? Why would they bother to read it? But hey, even if I lost some time and effort and money, at least I wouldn’t get this dirty helpless feeling that I hadn’t tried…

It was in September last year that I started planning an entire site dedicated to family caregivers looking after dementia patients in India. Not just a section on a website, not merely a few pages or a pamphlet, but a full-fledged site. I drafted out the core set of pages, and then, in late October, I bought the domain and made the site live. The website now has over 90 pages, all full of information about dementia and its care, resources in India, books, DVDs, presentations, and…plenty of interviews.

As of today, the Dementia Care Notes site has twenty-three detailed interviews, eighteen of them being interviews of caregivers. (see the list and click the links to individual interviews here)

Not Alzheimer’s or Parkinson’s? Then why’s there a problem?

When my mother started facing balance problems, I had no clue what was happening, but I’d heard of Parkinson’s and that was my first suspicion. When she started facing memory loss, the only disease I knew related to that was Alzheimer’s. I didn’t know much about either Parkinson’s or Alzheimer’s, but I’d heard these names, and seen articles on them. I’d made a quick mental note saying I may need to know more about these problems some day. I’d even kept some cuttings “carefully” for later; I wonder where they went

As it happens, my mother’s diagnosis was neither Parkinson’s nor Alzheimer’s. We went through multiple neurologists before I was given a documented diagnosis, and I took pains to memorize the phrases in it so that I could tell anyone who was interested the exact problem.

The turning point, and becoming proactive

Thanks to Internet, by the time I moved along with my mother to Bangalore, I was reasonably informed about how to communicate with my mother, and how to help her. I was also lucky that I’d managed to get a full-time person for her in Bangalore; I had not managed to do so in Delhi. As I described earlier, the one-bedroom apartment for my mother and the full-time attendant was set up specifically so that it was both roomy and safe and exactly met all that my mother and her attendant could need. There was some language problem because attendants here were not that good in Hindi, but I’d created a phrase book of sorts, and would supply each attendant with a couple of Kannada-Hindi books like Rapidex. I also made sure that the attendant had enough to read/ amuse herself.

Yet, things were still not working out. There were episodes of rages and accusations by my mother, and attendants were unhappy, too. I would spend hours with my mother, and most of these went listening to her unhappiness and complaints about the attendant, about me, about what visitors said, or things she imagined because of what she’d been told by visitors or had imagined in her deluded, jumbled-up reality. I would end up spending most of my time calming her, but soon after, she was back to her agitated state. Sometimes, she was depressed because she did not understand why she was not “normal”. There were days she seemed happy and calm, and I noticed these were days when she spent a more structured day with less interactions or stimulus.

Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.

A common loneliness…

For the last few days, I’ve been recalling some of the challenges posed in caregiving because of my mother’s condition. These were places where her memory loss and confusion resulted in her saying and doing things that hurt her and people around her. They caused me repeated embarrassment and anger and frustration, they made me withdraw from people around me and effectively isolated me, and they made her fall ill and hurt herself. Most of the time, though I had begun to register that she was acting out of confusion (and not because she wanted to be mean), I had no effective way to reach out to her or to explain to others or generally make things better. There was an overall sense of helplessness and inevitability that I experienced.

I’d like to wrap up this part of my recollections by sharing her obvious sense of insecurity and isolation.

There were many incidents in those difficult years that showed how insecure my mother had started feeling. In addition to making me promise again and again that I would take care of her, she made it a point to complain to everyone about me, and when they talked tough to me, she’d tell me, “See, did you see what he said? You must do your duty properly.” Essentially, she was using these complaints to make sure I didn’t forget or neglect my duty. Earlier, I’d seen it as manipulation done out of dislike for me, but over time I realized this to be a twisted thinking of hers to get what she wanted.

She felt that if others were always telling me what my duty was, she would be safer.

Ignorance is not bliss…

After making yesterday’s post, memories have been flooding me. Memories of how people I knew well, good, well-respected, educated and informed, religious people would say things that could only be called cruel to my mother, because they refused to understand my mother’s ataxia and dementia, and how these affected her. People whom I repeatedly requested to change the way they talked to her, but they refused, claiming I was exaggerating things or just exercising “control” over my mother. That I was not doing enough to make my mother okay…

I could probably exhaust a month’s worth of entries over these memories, but I’ll select just a few and write of them today.

Take this elderly gentleman in our neighborhood, who was mentally sharp even though in his eighties, and he loved meeting people. He could remember everyone’s name and face and life history and hold interesting (well, almost) conversations with people. He would drop in to meet my mother sometimes. For some reason, it bugged him to see that she was not socializing with people, and stayed in the apartment all the time.

Day 2 and warming up to the blogging

Yesterday I thought I’d do a neat fit-into-boxes categorization of a month’s worth of blog entries, but I found I was too scattered in my thinking, so I’m letting my instinct take over till I get back my “blogging fingers.”

Here, for example, is one thing that bothers me…

Sometimes, when I tell others (non-caregivers) of the stress that dementia caregivers face, or of the challenges posed in looking after dementia patients, they semi-shrug and say, “Oh, we know the problems of looking after elders–doesn’t everyone! But our parents brought us up, so it is our duty.” Some even say, “You think those people have it tough because of their parents? You should see my parents! Really, my parents are the limit!”

Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. ONe day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.

behavior of concern

A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside