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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Dementia is not something only “others” get: Thoughts on vascular and other types of dementia (not just Alzheimer’s)

Last week, a neighbor who had been reading my Dementia Hindi website said, “I did not know this could also be due to vascular problems” (“mujhe nahin pataa tha ki yeh naadi sambandhee bhi ho sakta hai”). Her husband has hypertension, and they are not always careful about it; she was obviously shocked at the thought that neglected blood pressure problems could be connected in any way to the sort of symptoms she had seen in my mother. Dementia, hitherto a name this neighbor could barely pronounce, had become a relevant topic now.

I’d been tense watching this neighbor read the web page (the sort of tension a parent feels when a child is onstage). She had nodded at times, frowned at times, even muttered to herself. Her detailed questions after she finished reading the page showed that she was genuinely curious and concerned. In the course of my answers I happened to mention that sometimes head injuries can cause dementia, and again I saw the info-byte hit her hard; I suspect she’ll be more particular about family members wearing helmets, too.

Her concern set me thinking.

A lot of people think dementia is something that happens to others (not to them). They do not know how close it can hit. More important, they do not know that some health or safety aspects they are currently neglecting could increase their chances of dementia.

An additional problem is the confusion between the two words, “dementia” and “Alzheimer’s”. Much of dementia awareness is woven with the word “Alzheimer’s Disease”, and many dementia support organizations work under the umbrella name of Alzheimer’s. To laypersons, these terms seem interchangeable. And because “Alzheimer’s” seems an alien name, imported and “foreign”, many people are dismissive of it, and are also dismissive of dementia.

Such erroneous interchangeability causes weird misrepresentations. For example, one newspaper may claim that India has 3.7 million dementia cases but another newspaper, based on the same expert interview, may say India had 3.7 million Alzheimer’s cases. Given that Alzheimer’s is only one of the diseases that cause dementia, common sense shows that both statements cannot be true. Yet once published, the article stands as such, uncorrected, perpetually misleading.

I’ve always been concerned about this confusion between dementia and Alzheimer’s and this submersion of dementia under the word Alzheimer’s. I have many reasons for this concern. My neighbor’s facial expression as she registered the existence of vascular dementia reminded me that I’ve been planning to write about this topic someday. Meanwhile, if my webpage helps this one family become more alert about hypertension and adopt suitable mechanisms to control it, that would be some value for the effort I put in

But first, just in case you don’t know the relationship between dementia and Alzheimer’s, here’s a video I made to explain it.

And here is some information on common subtypes of dementia quoted from the Dementia India Report 2010. As we can see, if we say India has an estimated 37 lakh dementia cases, then we can also say that India has an estimated 7.4 to 10.1 lakh vascular dementia cases.

Common subtypes of irreversible dementia (Table 1.1 of Dementia India Report 2010)

Dementia subtype	Early, characteristic symptoms	Neuropathology	Proportion of dementia cases
Alzheimer’s disease	Impaired memory, apathy and depression, Gradual onset	Cortical amyloid plaques and neuro-fibrillary tangles	50-75%
Vascular dementia	Similar to AD, but memory less affected, and mood fluctuations more prominent, Physical frailty, Stepwise progression	Cerebro-vascular disease Single infracts in critical regions, or more diffuse multi-infarct disease	20-30%
Dementia with Lewy Bodies (DLB)	Marked fluctuation in cognitive ability, Visual hallucinations, Parkinsonism (tremor and rigidity)	Cortical Lewy bodies(alpha-synuclein)	<5%
Frontotemporal dementia (FTD)	Personality changes, Mood changes, Disinhibition, Language difficulties	No single pathology –damage limited to frontal and temporal lobes	5-10%

Now over to some incidents and some concerns.

My mother was given a diagnosis of dementia but the doctors had clearly told me it was not Alzheimer’s, and I always mention this when I talk about my mother. After saying “my mother has dementia”, I would add, “my mother’s dementia is not because of Alzheimer’s.” Yet, many people keep referring to my mother as an Alzheimer’s patient. I am not talking only of laypersons; even many of the volunteers whom I have repeatedly told that my mother’s dementia is not Alzheimer’s have introduced me to others/ referred to me as someone whose mother “has Alzheimer’s.” I am very sure that these persons fully well know the relationship between the words dementia and Alzheimer’s and that they explain it carefully and correctly to an audience when taking awareness programs on dementia. Yet when they are not being alert, they use the terms interchangeably…

Once, when I was working with someone on a dementia awareness document, I pointed out a place where this person had written Alzheimer’s instead of dementia (I think it was on the overall stats in India); while correcting the slide this person shrugged and had a pained, irritated expression as if I was being unnecessarily nitpicky. On another similar occasion, one person actually told me, what difference does it make, people know the word Alzheimer’s through our awareness programs, so why say dementia and confuse them?

According to me, it’s simple: saying Alzheimer’s Disease is wrong and misleading if what we mean is dementia.

Frankly, I it bothers me when the press misreports and this misreporting does not get noticed by/ concern other volunteers (at least, they do not get as worried as I do). I get worried about the lower coverage of dementias which are not caused by Alzheimer’s Disease. And I get worried if professionals show indifference regarding the interchangeable way the two words are used by others. Or if they themselves do so. I’ve been thinking of doing a series of blog entries on this topic, but as I’m not sure when I’ll get around to doing this, I’ll do a warm-up blog entry today.

One concern I have is that by talking of Alzheimer’s instead of dementia we reduce public awareness/ visibility of other causes of dementia. So laypersons do not register that vascular problems could end up causing dementia, that head injuries could cause dementia, that many Parkinson’s patients may develop dementia, that there are many other medical situations that could cause this bunch of symptoms collectively called dementia. This means that people are not alert about other causes, they may not take as many precautions as they would have (had they known), and they may not seek help in time.

A lot of newspaper and magazine talk on the availability of treatments, cures, preventions again center around Alzheimer’s Disease. People assume that research funding on Alzheimer’s means that there will be no dementia type of problem once the Alzheimer’s mystery is solved and the disease is tamed (can be prevented, can be cured). They do not realize that many other diseases remain unresearched, untreated, uncured, and that people will continue to get dementia because of these diseases even if there is no Alzheimer’s Disease.

Then, much of dementia awareness focuses on memory loss, which is a prominent initial symptom in Alzheimer’s Disease. Some people even treat “memory loss” as equivalent of “dementia.” As it happens, there are some types of dementia where other symptoms are more prominent and worrisome than memory loss.

For example, take fronto-temporal dementia which is 5-10 % of the dementia cases in India as per the table above. Again, as per the table quoted above, the Dementia India Report 2010 gives the symptoms for this form of dementia as “Personality changes, Mood changes, Disinhibition, Language difficulties.” Someone expecting only memory loss to indicate dementia is likely to see these symptoms as a psychiatric problem or even someone whose character has gone “bad” (after all, these symptoms include disinhibition, which means some patients may be doing stuff like stripping or making crude sexual gestures and grabbing at people). Here’s a quote from the site of The Association for Frontotemporal Degeneration ( http://www.theaftd.org/) on the low awareness of this form of dementia:

Frontotemporal degeneration is one of the most common dementias in the younger population and is estimated to represent 10%-20% of all dementia cases. Still, most people, even many health professionals, have never heard of it.. (From http://www.theaftd.org/newly-diagnosed/ftd-basics)

So this is my worry: I am concerned about the wrapping together of dementia and Alzheimer’s Disease in so many awareness drives and other forums, because this can end up being problematic to persons suffering from other forms of dementia (25-50% of the cases, a non-trivial number). Delayed diagnosis or even missed diagnosis is one such unfortunate consequence.

Another aspect that hits me hard is the exclusion of other types of dementia in various caregiver study/ support forums. I’ve seen surveys sometimes being termed Alzheimer’s caregivers surveys though excluding caregivers of other forms of dementia may not have been an intention.

Support bodies for dementia caregivers are often under the umbrella name of Alzheimer’s, such as “Alzheimer’s society” or “Alzheimer’s and related disorders society.” Dementia caregivers of the non-Alzheimer’s dementias may not approach such bodies because of the name. I can share my own situation: in my initial days of seeking support I ignored all such bodies because the doctors had so clearly told me that my mother did not have Alzheimer’s–why, then, would I go to organizations focused on Alzheimer’s?

I find it weird that the terminology is skewed to make other dementias fall under the Alzheimer’s umbrella when, definitionally speaking, dementia is the umbrella and Alzheimer’s Disease is under it. It seems topsy-turvy to me I suspect the cause of this naming convention is historical, but it does end up making the non-Alzheimer’s cases feel a bit…unwanted? Outsiderish?

As I mentioned, this topic is close to my heart, and I don’t think I’ve done justice to it in this blog entry today. But I’ve begun thinking about it. Maybe some of you will share your thoughts and concerns (if you have any) with me through comments or email, and maybe I’ll get some idea on whether and how to pursue this topic in later blog posts.

Website referred to above for information on dementia in Hindi: http://dementiahindi.com

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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 knew the solution would be to share things online, but was unsure how to proceed. My Dementia Care Notes, India website is designed for caregivers, and I did not want to confuse or dilute the caregiver focus of the site. On the other hand, my blog (this blog, where you are reading this entry) carries posts that range widely, including personal experiences, musings as a caregiver, experiences and thoughts as a volunteer, wishlists, announcements, etc. But blogs are, by nature, not so organized, and while each post does have “categories” and “tags” attached, only readers with extreme perseverance/ stubbornness are likely to reach all entries relevant to a topic.

So, I chose a different online home for sharing material with volunteers; I created a special section on my personal website 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 on my website 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. Currently, it contains the following pages (this may change).

• Resources for volunteers helping caregivers
  • Introduction: Becoming a well-informed volunteer and selecting where to help
  • The Cultural Context of India and its Impact on Dementia Care
  • Applying available dementia/ caregiving material to the Indian context
  • Available: Explanation of dementia home care in India
  • Available: Dementia Awareness Presentation
  • Available: Draft document on setting up support groups
  • Ideas: Trained attendants and respite care for dementia
  • Ideas: Mobilizing children and youth for dementia
  • Ideas: Improving dementia awareness and sensitivity to caregivers amongst healthcare professionals

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 ]

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Dementia Awareness in India: Some Recent Observations

Some days ago, I was asked whether dementia awareness had improved over these last few years in India. Not an easy question to answer, for two major reasons. One, I don’t socialize much, and most people I end up meeting are people I know because I am a caregiver and a volunteer in dementia care — obviously a biased sample. Two, even when I do get to meet other people, I don’t really go around surveying them to understand the level of dementia awareness.

But I do have some recent anecdotes to narrate –  all these instances happened in the last few months.

Earlier, when I met people outside my dementia care circles, I would not mention my caregiver role in any detail. All I’d say was that my mother needed care. This was because I found most people uncomfortable with any mention of illness, and anyway they did not understand dementia. Even a factual statement from me about what occupied a large portion of  my life was enough to make them start avoiding me, as if getting pulled into a caregiver role is contagious.  But for the last two years, as I have increased my blogging and my volunteer work in dementia care, I really have very little other activities to talk about. If someone now asks me what I “do”, I say I am a caregiver and that I also do volunteer work in the area of dementia care. It is this that has led me to some of the experiences that I am sharing below.

Before I became a caregiver, I had a different career and a different set of aspirations. I had qualified in engineering and management from reputed institutions, and worked in well-known organizations before starting my own consulting practice. That means, there are people who expect me to be a “professional” and whom I meet in various alumni meets. It was in one such alumni party that I met a high-profile social worker, whom I shall call ”Cee”.  A person in the mid-50s, with a family that included parents and elderly in-laws, Cee spends most of the time helping some big volunteer organizations with their strategy, getting them funding, doing  advocacy – things like that.

Cee and I got talking, and I tried to understand more of what Cee was doing. I was asked, in turn, about my own work and career, and I explained that I was a dementia caregiver and volunteer. Cee looked blank at the word “dementia.” So hey, I have practice on this, and I gave Cee a very simple explanation of what dementia was. Blank. I gently pointed out that, as Cee lived with four elders in their seventies and eighties, and probably knew many others in that age group, perhaps this could be relevant, because otherwise Cee and family could mistake early stages of dementia with normal ageing, and thus miss the window where treatment was effective. Also, there are reversible dementias.

Cee was polite, and made the usual, social comments, but I did not sense any real interest or curiosity. I was a bit disappointed; to me, Cee was the exact profile that needed to be aware of dementia  – because of age, living with elders in high-risk age groups, and because of Cee’s social work background.  But I reminded myself that dementia is probably not appropriate party talk, and we exchanged e-mail ids and moved on to the food tables.  We sent each other emails later, and I repeated a few basics of dementia and gave links in case Cee wanted to read up more, but I got  a feeling that Cee felt that dementia was irrelevant to Cee’s personal situation, and just another sphere of social work.

At the next alumnus meet, I encountered another person (let me call this person ”Dee”). When, at introduction time, I mentioned that I was a dementia caregiver and volunteer, Dee took me aside. “Tell me, if you don’t mind,” said Dee. “What is the difference between Alzheimer’s and dementia?” Over the next hour, we nibbled at snacks as I explained things about dementia and answered Dee’s questions.

Understanding, believing, denying

Because of my concern about dementia awareness in India, I participate whenever I can in awareness programs, talking to people about dementia and caregiving.   The Dementia India Report 2010 says, “Awareness of dementia in India is low.” I see this as a polite understatement in a country where people usually fail to recognize dementia as a medical problem because they see the symptoms as either normal old age, or a mental problem (read: madness). Many (most?) doctors are not alert about dementia.

Awareness of anything, as I understand, needs both information and belief.

Usually, when we explain dementia, the focus is on disseminating information (and maybe case studies/ stories/ incidents), assuming that people exposed to the facts will believe them. But sometimes, even after hearing or reading about dementia, people don’t register what it is.  Information percolates only if people are willing to believe it, and many things come in the way of believing that dementia symptoms are caused by medical problems.

Finally, some clarity about the diagnosis

After our interaction with the second specialist, my mother was understandably quite upset with neurologists in general, and not willing to venture out again.

Our GP, who was also a neighbor and knew us quite well, had no suggestions about what we could try (other than try another specialist). He said the problem was most probably neurological, but did not give a name to it (I think he suspected the diagnosis, but felt it had to be delivered by a specialist).

My mother, meanwhile, tried a round of homeopathy, gave up. She would tell friends about the walking problem, and even if she didn’t, it was visible enough. A family friend brought along a doctor sister, who examined my mother very carefully, and then said she suspected Parkinson’s. This lady was working as a volunteer doctor in a village and she told us that problems like my mother’s were often undiagnosed. She reiterated that people usually labeled such problems as ageing, but these were not ageing, and we would have to take care of her as the problem would get worse. This was a short visit; perhaps she would have said more if we had met her for a longer time.

When the specialist laughed at her

The first specialist we consulted may have shrugged off follow-up visits, but his manner had been so unsympathetic and the information he gave so scanty that we were not sure we’d done enough for the situation. On the other hand, the whole experience had also left all of us–and especially my mother–reluctant to go to another doctor. My mother felt insulted, and probably was shaky inside because she was experiencing more cognition problems than were obvious to us. Now she did not feel she could talk to a doctor…

It took my mother a while to agree to consult another doctor. Her walking problems were alarming by now, and her memory loss quite obvious within the family. We finally narrowed down to a hospital that specialized in neurology, and where every doctor was a superspecialist. Surely my mother would get suitable attention there.

Our first consultation with a specialist

My mother’s initial problems were mainly related to balance, though her memory loss had also started by the time we reached our first neurologist. Her balance and coordination problems (ataxia) were visible, while problems such as memory loss, disorientation, and inability to do things were in a very initial state.

I was only peripherally involved in her health at that time; I did not see myself as someone responsible for her health and helped out when she asked for help. My parents were independent, and would have resented any “interference” and I was engrossed in my life. Most of us do not get involved in parental health unless pulled into it, which often happens only after symptoms have crossed a threshold of alarm.

My mother complained of minor dizziness problems in 1991/ 1992. As she had a medical history of cervical problems, and the dizziness seemed minor and very occasional, she was not too concerned. In 1992,when I’d gone out of town for a trip, my mother drove to Pallika Bhawan, then visited an emporium on Baba Kharagh Singh Marg, where she swayed when climbing one of those arty spiral staircases. She fell, hurt her head. There was plenty of blood. A good Samatarian rushed her to a hospital where they stitched up in her head. She managed to remember the home phone number, and my father was contacted. The doctors did a CT scan which was perfectly normal,and their report mentions no “age-related” anything in it.

On diagnosis, on doctors who may not know or care

One thing that bothers me is this whole business of diagnosis of dementia and how often it gets delayed and how different specialists say different things and confuse us and delay us in getting started in adjusting our lives to this reality…

…and the problem continues even after diagnosis, because when we take the patient to doctors for other ailments, many doctors and medical staff do not understand how having dementia may affect the patient’s ability to communicate problems or explain what happened.

The Dementia India Report 2010′s foreword by Dr. K Jacob Roy states:

It is estimated that over 3.7 million people are affected by dementia in our country in 2010. This is expected to double by 2030. Despite the magnitude, there is gross ignorance, neglect and services are scarce for people with dementia and their families.

Dementia diagnosis is often delayed for multiple reasons.

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.

We need more of us sharing our caregiving experiences

In many of my blog entries on dementia and caregiving, I have shared my impression that poor awareness of dementia in India is a major concern area. I often feel that dementia is far less understood in India than in some other countries, and that the role of the caregiver not seen as a significant, contributing role  that needs special patience and skills.

Relevant in this context is the work of 10/66 Dementia Research Group. To quote them:, “10/66 refers to the two-thirds (66%) of people with dementia living in low and middle income countries, and the 10% or less of population-based research that has been carried out in those regions.” This group is a collective of researchers working on population-based research into dementia and related areas in these countries.

Interestingly, the website includes a report on Qualitative Studies which confirms my view of poor awareness of dementia and caregiving in India.

The report reminds me of a support group meeting where a caregiver shared how, when his father was diagnosed with dementia, the family was so ashamed they wanted to institutionalize him and  isolate him (hide him, get rid of him so that they were not associated with him), and when the son took over the caregiving, they isolated him, too.

I think we need more people speaking up about dementia, and about caregiving. We need more people admitting that the elders in their family have dementia (admitting to themselves, admitting to others). I hope more people will write about it (blogs, books, articles, reports, novels, whatever), speak about it, think about it, so that one day people with dementia in our country can life a fuller life to the extent their ability allows them, and carers can care for them and lead fulfilling lives of their own, all done with dignity.

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dementia caregiving in India, some thoughts (part 2)

There is a lot of material available on the web (free) on dementia and caregiving. There are also several books.  As a caregiver, I read these to educate myself and make caregiving smoother for my mother and myself.  I face one problem: most of the material assumes a social and cultural context different from what I find in India.

Briefly, books, pamphlets, write-ups available usually assume an American/ European/ Australian culture, where people are likely to live independently, openly (and without hesitation) make choices that allow them to “have a life”, discuss their desires and needs, and have their privacy respected. Specialized tools are available, and information on dementia is widespread. The role of support persons and caregivers is recognized and respected. The environment in India differs along these axes in varying degrees. We must therefore re-interpret some lessons/ suggestions, and explore alternate means to meet the intent. This is applicable to caregivers, counselors, support groups, and  NGOs.

Here are my initial observations and thoughts on differences and possible ways to re-apply the underlying ideas in our context. I would love feedback and suggestions on this material so I can develop it into a more usable note.

Privacy and independence In India, people openly comment on others, judging and criticizing them for the choices they make, for what they look like, for what they are doing and not doing. Caregiver actions are therefore, fair game for everyone. Many people who comment are well-meaning but ill-informed. They pass caustic comments, especially if the caregiver is a daughter or daughter-in-law and the visitor is elder (and elders are always experts ). Worse, visitors egg on the patient by telling them to demonstrate more will power, or criticize/ scold  the caregiver in front of the patient. Unfortunately, methods of maintaining patient and caregiver sanity in face of such visitors are  not addressed in books on dementia care, because they assume a society where people (even if judgmental or critical) are unlikely to voice this directly (however, they may call up social workers and the police ).

dementia caregiving in India, some preliminary thoughts…

A lot of people talk of how countries like India have more family values than other countries, and how elders are more valued, cared for and respected here. While many countries end up spending a lot in institutional care facilities for the aging population, this cost is relatively low in India where most families look after their own.

As I see it, there are plus and minus points of every society, and while our setting works well in some ways, I think we should not ignore the problems it can result in. (Note, I am not a sociologist or counselor or any such thing, just an ordinary caregiver sharing my opinion.)

In India, children live with their parents, and their children with them (Going two, three, even four generations). While in many countries a son or daughter living with parents past the age of eighteen can cause a few raised eyebrows, and a married son or daughter staying with parents is far from common, here it is assumed that children will stay with their parents as far as possible. You stay with your parents as a child, as a youngster, as a college student, and after employment, if you are in the same town. You try to be in the same town. After marriage, the son stays with the parents, and the daughter-in-law moves in too, adjusting to the in-laws (food, dress, TV programs, schedule of day, way of talking, etcetera). A daughter, conversely, moves out after marriage to her in-laws place. This is normal. If the employed son is in another city, well, he has to live separately, but he is expected to try and find a job in the same city. Sometimes sons live separately even when in the same city as their parents, but they have to always justify to others why they do so .

As the parents age and retire/ fall ill (say, first heart-attack, first stroke, first stent operation), even if they were living separately, they move in with the children (or the children move in with them). Usually, when there is more than one son, the eldest son is the privileged person to get the parents.