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.

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

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

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

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 ]

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yes, we need these tips pooled and talked about.

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

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

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

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

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

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

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

(if the player does not load, visit this youtube link directly)

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

Hindi website for dementia caregivers in India (40+ pages): an announcement

This blog entry is to share that I have created a 40+ page Hindi website for caregivers of dementia patients in India. Below, I explain the scope and purpose of the site and put forth my request to all blog readers.

The website:

The site is at http://dementiahindi.com. Topics covered include dementia, caregiving for persons with dementia, related resources available, videos, interviews, and contact information. Everything on the site addresses the caregiver, keeping in mind what a dementia caregiver (as per my understanding) may need to know, or what may help a caregiver. The cultural context is India, and so the examples and the assumptions of system/ social support are based on what is found in India.

The material is written in conversational, normal Hindi (Sanskritized words have been avoided). There are pictures and cartoons, with blurbs in Hindi. As most available online material is in English, many of the referred links to go English sites, but I have also given links to all online Hindi material on dementia/ care that I am aware of (which is pathetically low, and therefore I created this site). The material is a loose (not exact) translation of the English site, Dementia Care Notes, and has a more Indian idiomatic flavour which is possible because it is in Hindi.

The purpose:

As I am not aware of any extensive Hindi site on such a topic, my attempt in creating this site is to break out of the chicken-egg situation of demand-supply related to Hindi sites. People don’t create sites because no one visits them, and people do not look for them because there are none…that is the sort of problem I have tried to step out of.

The http://dementiahindi.com site is created:

• For people who prefer to read in Hindi
• For people who prefer English but need to show family members stuff written in Hindi (they can print the pages/ show them online)
• For volunteers who are too busy to/ unable to support caregivers who need support in Hindi (they can pass the link/ print the pages)
• For volunteers who want to prepare material in Hindi (they can contact me so that we can work out how they can use this material as input)
• For myself, as a starting point for more work I may do in Hindi (like preparing videos)
• To provide an online presence in Hindi that may make a Hindi-speaking caregiver approach me for help, – with the confidence that they can talk to me in Hindi
• For the curious who may surf by and read the site/ use it to reach other online material available in Hindi

Future Plans:

These are not ambitious, and consist of:

• In an on-going way, responding to anyone who contacts me through this site
• Accepting and processing any suggestions/ corrections based on my time and energy levels
• Updating the site for more Hindi material I may prepare (prepared as per my time and energy levels)
• Updating the site to provide links to other material in Hindi that may be available or accessible

My Request to You:

Please spread the word about this site.

I sometimes get emails asking me, “Can I pass on this link to someone I know?” and I’d like to state it clearly that the very purpose of creating such a site is that it should reach people who may be helped by it, so please, please spread the word; you do not need to ask me to pass the link around. There are many people in India who are not all that comfortable with English (though they may not say so), and would prefer material in Hindi if they could get it. Please share this link also with people who may get helped, with people who may know people who may get helped, with people who may know people who may know people who need help…you get the picture.

Social media shares are good. But social media shares last just till the next bunch of tweets and status updates fill up a couple of scroll-downs, so please also consider adding the link to your blog/ site if you think it could help, if you think it fits…

As far as I know, there are no established conventions for how people locate Hindi material on the web. Different people use different ways, and most assume there will be no material. Searches don’t work that well, most people do not use Hindi transliteration on their computers, the Hindi aggregator sites (that were supposed to collate information on Hindi websites) keep going defunct.

So the only way I know to spread the word is “word of mouth” or “word of mouse”. Have a look at the site, and if you think it suitable, please spread the word.

Please help me by giving me any more information you have on online Hindi material on dementia care. I will check it out, and include it as suitable.

Please help me out through feedback on the site, especially any awkward sentences you note, any place where the language is not conversational enough, or there are spelling mistakes. And, of course, other suggestions. I am not an expert, and I have done this alone, and I would appreciate your input.

At the end:

There is, of course, stuff I’d love to share about how I got into this, why, and how I finally got over my diffidence and took the steps needed to create this site, but they are probably worth an entry of their own and that can wait.

For now, let me just end this post by reiterating: The website http://dementiahindi.com is now a complete unit, with 40+ pages, aiming at helping caregivers of dementia patients in India. It is before you. Please consider the site announced. If you have the time and energy, please have a look.

If you see any mistakes, or if you have any suggestions, please, please let me know. The beauty of online work is that it can be changed, improved. Email me at cyber.swapnakishore@gmail.com or use the website’s contact page. I did this alone, but now it is out there, and I am not alone. I welcome comments.

If you think the site could help someone, please help spread the word. Mention it wherever you see fit–social media (Facebook, twitter, whatever), your blog or site. If you think it can help anyone, please use “word of mouth”, “word of mouse”, whatever.

Thank you.

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

About doctors, hospitals, healthcare, and a dementia care support wishlist

One thing that concerns me deeply, both as a caregiver and as someone interacting with many other caregivers, is that luck plays a big role in the quality of support received from doctors and various medical support systems. Many times, alas, it is bad luck.

There are dedicated, compassionate, and well-informed doctors who support family caregivers through timely diagnosis, sensitive handling of the explanation, and appropriate medication with due attention towards possible side-effects. They also guide the families to various support systems and counselors who can then help the families care for the patient without the caregivers becoming basket-case burnouts themselves. We also have GPs (General Practitioners) and family doctors who notice the early symptoms in a patient and alert the family about the need to check for dementia, and direct them to appropriate specialists.

But this is rare.

The Dementia India Report 2010 admits that awareness of dementia is low even amongst the medical community and support providers; some excerpts:

…there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals

There is no structured training on the recognition and management of dementia at any level of the health service

Health care services remain insensitive to and do not provide the much needed information and support for carers and family members

Reducing caregiver isolation, working from home, using coworking

Recently, I shared my own experience of isolation and loss of social skills as I became more and more home-bound, and then I suggested that caregivers be alert about this possibility and guard against it. A few days later, I happened to talk to a caregiver and she described what she planned to remain connected to people even when she worked from home. I asked her whether I can share her idea, and she not only agreed, she even said that such sharing helps people and she also may pick up ideas if others share their ideas (hint, hint, to any of you who has ideas)

Anyway, so this caregiver looks after a dependent parent who has dementia and is immobile, but can be safely left alone for a few hours. The caregiver works from home, executing freelance assignments that she does on her computer and emails. She was once very active socially and her enforced seclusion dampens her spirit, so here is what she is considering:

This caregiver has an “office room” to work from. Now she will add some tables and chairs to this room to make it suitable for multiple users. She will then invite friends who work from home to use her office room as their offices. Each person will work on her own assignments while sharing the same office space and in the companionable presence of others, so that they all feel like working more and don’t succumb to distractions or feel lonely. The caregiver plans to put out flasks of tea or coffee (for which she may ask her friends to pool money, or maybe not, she hasn’t decided).

Priorities and scope of care

A few weeks ago, I had a long phone chat with a caregiver that confirmed what I suspected: some caregivers feel that persons around them only keep thinking of what more the caregivers can do for the patient, without sparing a thought for the wellbeing of the caregiver.

This caregiver, let me call him/ her Emm, is handling fulltime support of a parent with dementia, alongside the responsibility of running the home and earning the money to do so. When Emm first contacted me, the parent (who had several medical problems) had not yet been diagnosed with dementia, but Emm had chanced upon my website and realized that the parent’s behavioral oddities could indicate dementia. Over several long calls, we discussed multiple aspects of caregiving and future planning. A formal diagnosis was obtained after a few months, and Emm’s self-education on dementia proved helpful in extracting more support from the consulting doctors than they were voluntarily offering. Emm also joined multiple forums to connect with volunteers and caregivers. Caregiving has subsequently stabilized.

In our last catch-up-and-chat call, Emm expressed disinterest in discussing dementia or knowing more about it. “I do not want to think about dementia” were the exact words. The parent was stable, seemingly content, clean, fed, with all medical checkups up-to-date. Emm wanted to use this stable period to work hard and build savings. Having already read up enough on dementia, Emm was confident about being able to recognize if the symptoms were worsening, and would contact me or others for help at that stage. “I hope you don’t mind if I don’t like to talk about dementia,” Emm told me.

I’m not exactly fond of talking about dementia myself, I said

Understanding dementia home care in India

Almost one year ago, a very dedicated volunteer told me that though she tries her best to help home caregivers, she sometimes wonders whether she can ever understand them enough to help them. She had been facing problems with staff who would not understand what dementia was, and would quit at the smallest “difficult behavior”, and there were days she felt driven up a wall herself. She just couldn’t imagine living with and coping with a patient all the time, the way family caregivers did.

This volunteer told me that while she gave family caregivers what she felt was appropriate advice and hoped it helped, she felt diffident about it at times.

Being both a caregiver and a volunteer, I am often able to connect with the situation and challenges of home care, because even if I have not faced some of the problems others talk about (and boy, there is a wide range of problems out there), I can extend my experience to imagine it. This volunteer’s comment made me realize that perhaps I should do something about this gap of understanding that non-caregiver volunteers experience. I also realized that when some volunteers ended up sounding preachy, insensitive or critical, they may just be naïve and ignorant.

Anyone who has brought up kids would know the difference between handling a child 24 hours, through illness and tantrums and soiled clothes, as against playing with them or babysitting them for a few hours in a neighbor’s house. Things always look different in short, controlled situations from which one can opt out.

Most volunteers who advise home caregivers have never worked as attendants/ caregivers in a respite care on a 24 hour shift for a few days consecutively… Most have never had to stay awake day and night and clean a soiled person who is pushing them away and shouting at them in the middle of the night…(maybe volunteers should go through such experiences, though, it would make them so much more effective as advisors)

Anyway, prompted by the comment of the above-quoted volunteer, I wrote a short note to describe what dementia home care involves (my original draft was five times this length, but I reduced it to keep it at a readable length). I think anyone in contact with home caregivers may find it useful to get some idea of what caregivers are experiencing.

Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

Yesterday, I shared my observations related to availability and quality of trained attendants and respite care for dementia in India (here); today, I am setting down some thoughts on what concerned agencies and volunteers can do right away to make a difference in a way that can scale up fast. I’m no policy expert, but hey, desperate people get wild ideas, and here are mine.

For those trying to help caregivers, the pathetic state of available support is disheartening. Day after day, one is forced to break the sad news to overwhelmed caregivers and I’ve seen many concerned persons getting distressed that they cannot help the way the callers (or email-writers) obviously expect them to do. I’ve felt down myself, both as a caregiver and a volunteer.

Some volunteers begin considering setting up agencies or respite care homes themselves. They redirect energy, time, and resources into trying to set up whatever is needed to train a batch of attendants, or start planning a specialized dementia care home. Often, many of these persons realize midway this is just so much work, and doing this means they cannot do anything else. They feel they are spending all their energy for something that may benefit at most 10 or 20 families, and wonder whether this is more important than what they were doing earlier. Also, being committed to a cause and passionate about it does not naturally equip one to run a full-fledged establishment for fulltime care. These volunteers/ organizations then give up, or start something that fizzles out, having lost valuable time and energy (and sometimes goodwill) along the way.

Here is what I think:

Ideally, there would be this huge nodal body that sets up gazillions of agencies that supply excellent trained attendants at very affordable prices, and also creates heaps of day cares and respite cares so that no dementia patient remains unsupported.

But that does not seem feasible, at least in the short run

We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities.

Trained attendants and respite care for dementia: Observations from India

I keep getting queries because of my site Dementia Care Notes, and the most frequently asked questions by my site visitors are related to getting trained attendants for dementia home care, or getting information on old age homes where dementia patients can be admitted.

My website already contains information on these, but I think people want to hope, and when they are desperate, they want a personal and direct answer. Much of my correspondence time goes in personalized replies to such queries, but I thought I’d put together a sort of summary answer here, anyway.

First, old age homes for dementia patients.

As per the Dementia India Report 2010, there are an estimated 37 lakh (3.7 million) dementia patients in India and 6 respite care facilities (facilities for fulltime stay, short term or long term) that are specialized for dementia patients. I’ve summarized some data alongside, and you can see the contact information for all six at my website’s resource page here: Dementia Caregiver Resources across India. Add to it the day care facilities, the optimistic estimate of capacity oriented for care suitable for dementia patients is 400.

Four hundred, across India, a nation where the number of estimated patients is 3.7 million.

A massive gap, indeed.

Below are some observations I have to add on this topic–these are, of course, my observations, not an authoritative report, but they are based on multiple data points, and I welcome comments that may improve this understanding.

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

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

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

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

I’m talking of persons who are concerned.

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

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

Adventures in Hindi Part 2: The failed experiment of Have-English-can-translate-to-Hindi

Continuing my narration of my office-chair adventures related to Hindi. This is the second post of a four-post entry (see part 1 here); I’ll use today’s post to describe my (since aborted) forays into translation. It took me a few months to step past that (what I now think of as) translation trap.

My initial thinking was simple and clean. Here’s what I thought: I have a fairly exhaustive dementia care website in English. I know Hindi. Let me translate it myself. How difficult could that be? Or if it takes too much time (or, er, is difficult), I can get the translation done professionally. It is just (so I thought) a matter of being willing to spend either time or money—and people do say there is an equation whereby time is money

I usually tackle any challenge in a two-pronged way: buy books, and start Googling. This was no different.

Within a week of my initial doodle recognizing this new self-imposed project, I had cleared out shelf-space, bought a Hindi grammar book, bought English-Hindi and Hindi-English dictionaries, bought a bunch of Hindi magazines and other health books. I had also located the Google transliteration facility and translation facility, installed the Indian language pack of my Microsoft Word (I hadn’t even noticed it had come bundled with the software). And I had even found a bunch of good online dictionaries for Hindi and Urdu.

It took some playing around to understand the basics of the transliteration package, and how it did not always work, and how to use the on-screen keyboard instead. It was interesting, for example, to see how the transliteration was not always the way Youtube songs are transliterated. “Ki” became कि, and not की (for which I needed to type “kee” ) And also, one can “train the transliteration software”; I trained mine to transliterate “dimenshia” to write out डिमेंशिया and reached a point where डिमेंशियाwould pop up as a choice even if I had just typed “dime”, which is a sort of tip-of-the-fingers way of speed-typing in a fairly different way.

Time to actually translate stuff, eh?

I knew, of course, that “Hindi” has many shades and versions. I remember the time it had taken me to orient from my Delhi Hindi to the Mumbai (then Bombay) “Hindi” and I even remember how years of living in Patna as a child had made my Hindi acquire the Bihari style (the effect took some months of Lucknow Hindi to go). Luckily, of course, we have Bollywood which gives us a range of Pakeezah to Munnabhai to educate us on diversity.

I did not realize how much that diversity would impact my attempts to translate. After all, people do translate stuff….

I surfed to locate bilingual sites, Hindi health-related documents, or sites created in Hindi. Not much choice existed. Many websites used impressive words that reminded me of news bulletins and Hindi exams. But if my intention was to retain the reader’s attention as well as communicate, I wondered how I could balance “brevity” and “purity” against “normal everyday Hindi”, whatever that was.

To begin with, I got stuck with the word “caregiver”.

Online caregiver communities: supporting each other

I used to feel lonely as a caregiver till I discovered that there are enough of us, and that there are communities–and even more important: we caregivers can form our own communities. Unfortunately though, caregivers don’t get together often enough, because caregiving is often hidden behind the scenes, even for serious and long-drawn illnesses.

In India, where looking after family members (whether a child or a spouse or a parent) is part of the expected duty, family members typically do not share their problems with “outsiders”, scared that they will be seen as unloving or as persons shirking their duty if they let even a bit of fatigue show. I think silence about caregiving actually worsens the quality of the care we can give our loved ones, because information, tips, and ideas do not get pooled, and care given by a family is restricted to what they can figure out by themselves (possibly in their overwhelmed state). In effect every family is forced to reinvent the wheel.

Contrast this to roles that are talked about openly– like “normal” child-rearing (not bringing up children with special needs, which remains in the shadows). For normal child-rearing, experience pools are easily available and can be accessed without shame.

We need communities and sharing for caregivers, too. Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work.

Of course, given that caregivers remain invisible, it becomes even more challenging to collect enough caregivers to form a community, and then make members speak up and share

In the “Western” countries as we call them, support groups are relatively common. Caregiving is openly acknowledged as a role, and society accepts that caregivers need support. Such support is partly given by support groups that meet periodically to discuss topics and situations of mutual interest, get expert opinions, and relevant training.

In India, people assume that a “joint family system” provides all necessary support, and feel that outside help is not needed. Some even assume that if a caregiver needs help from outside the family, it indicates the decline of the joint family system, of culture, and all that. The mechanism of supporting caregivers is associated in part with a sense of inadequacy and “bad family” and shame for society as such; if our families were “good”, we would not need support from “outsiders”.

But taking care of a patient using unproven “instinct” is not the same as being an “informed” caregiver who understands the situation and challenges and uses suitable mechanisms and skills to help the patient.

Caregiver communities collectively enable caregivers to become better and more informed caregivers.

Given how difficult it is for caregivers to locate each other and coordinate meetings, in-person communities are difficult to form and sustain. Many caregiver groups that are started with the best of intentions start tapering off unless some volunteer/ caregiver makes it his or her life-mission to constantly induct new caregivers.

Because, you see, a caregiver community is an ever-changing community.