FAQ on Organ/ Body/ Brain/ Eye Donation

This post provides basic information on organ/ body/ brain/ eye donation using an FAQ format, and includes links to sites with more information. It contains general information for the convenience of readers, and is NOT provided as expert/ authoritative advice, so please consult appropriate authorities as required. Decisions regarding donations are deeply personal, and this post does not attempt to advocate donations or enroll potential donors. I have no intention to persuade you about the merits or demerits of donation. Also, this post is written for the Indian context.

Why this page: After my mother died and I donated her brain, eyes and body, many folks contacted me with queries that indicated conceptual confusions about types of donations and about the practical aspects of donating. I looked around for several months for a website I could refer them to, but most sites focused only on some types of donations or were geared towards enrollments, and did not discuss practical issues/ procedures applicable in India. So I decided to create this post.

I try to keep this post updated (last update date: 18 Aug 2019) but some highlights of common queries/ problems I encounter are also discussed in Voluntary body donation: some thoughts in response to queries I get.

What is body donation?

Body donation is the donation of the whole body after death, for medical research and education. (See wikipedia page: http://en.wikipedia.org/wiki/Body_donation)

Usually, this is done at a medical college (teaching hospital) and the body is used by medical students to study anatomy. It is also possible to donate a body/ some specific organs to specialized research institutes that may want to study a specific medical condition.

Body donation is different from organ donation.

Read the full post here

Some serious challenges faced in real-life dementia care situations

Over the past few years, I’ve connected with many fellow dementia caregivers and they’ve shared their personal situations with me even though it was clear that in many cases, I could do nothing but listen. While I can provide some information on dementia and caregiving tools and share some tips, I cannot help counter their major real-life problems, like when they develop back problems because of strenuous care tasks, or they exhaust savings and family silver over expenses, or when their siblings threaten to file property cases against them even as they are fully occupied looking after the person with dementia.

Looking around me, I find very little acknowledgement of several major problems that caregivers face. I mentioned this to a volunteer once, and was told that they could not help in these problems so why talk about “negative” things? Another person said such situations were “exceptions” (but had no data to support this perception). According to me, when low visibility could be driven by shame/ diffidence/ fear of being criticized or of being seen as negative, we cannot assume that the problem is rare. The problem may be common but well-hidden. Unfortunately, hidden problems don’t get attention…or solutions…

In the past I’ve tried to give visibility to real-life caregiver situations by publishing detailed interviews on my website, but I think it’s time to put together a post to acknowledge some problems that don’t get space and exposure.

Three areas that I find where caregivers face major problems are:

Severe shortage of money

I’ve talked to caregivers facing severe financial crunch. To outsiders, they appear like normal middle-class “people like us”, but in the confines of their homes they struggle for even basic expenses, their savings gone, their known sources of income down to minimal or about to stop. They don’t talk of this to others — perhaps out of privacy/ shame, or perhaps because they don’t want people to think they are angling for sympathy or money.

Read the full post here

On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis

Around this time last year, I was in touch with a caregiver who was trying to cope with a father’s fronto-temporal dementia. In addition to watching his decline, this caregiver was also struggling with regret and frustration; the diagnosis had been delayed because senior specialists missed it, and the family had wasted several months in bewilderment and emotional flux wondering why the father had changed so much. If they had known the diagnosis earlier, they would have been able to accept and support the father’s situation better.

Over the year since this incident, I’ve been especially alert about such cases. (This caregiver’s case, incidentally, was not an isolated case, and I have blogged about similar concerns earlier). Of course, there will be missed diagnosis for any disease, but the problem is when diagnoses are missed because of systemic misinformation and stereotypes, not merely by chance. The human cost of delayed/ missed diagnosis–misunderstandings, anger, sorrow, conflicts, and no idea how to support–can tear apart a family.

In my opinion, too much of the publicity around dementia centers on Alzheimer’s and memory loss, and too much of the depiction focuses on elderly patients. Many people, including doctors, therefore assume that the early symptoms of dementia must include memory loss and that dementia hits only the elderly. So when family doctors are consulted for a fifty year old with problems like personality changes, odd social behavior or inability to name familiar objects, they may look at stress, family conflicts, and psychiatric problems. They discard even a remote possibility of dementia because “there’s no memory loss.” Such missed diagnoses can be avoided if we redesign our awareness campaigns.

Experts have increased their earlier estimates of the percentage of young onset patients and of non-AD dementias like FTD (fronto-temporal dementia/ degeneration). But existing campaigns continue using phrases like “dementia is a disease of the elderly” and “dementia is memory loss.” Many people use “dementia” and “Alzheimer’s” interchangeably. Deeply ingrained habits require motivation and effort to change, and perhaps volunteers/ professionals involved haven’t yet seen the need for that effort. But the way I see it, such (inadvertent) exclusion/ profiling contributes to poorer visibility and thus in poorer diagnosis, which in turn hides the true prevalence of the ignored segments. People don’t think “exceptions” exist, so they are not alert about them, they don’t detect it/ diagnose it, and then, because the diagnosed cases are low, people feel justified in ignoring it. It looks like a vicious circle.

Take FTD (frontotemporal dementia/ degeneration), a group of dementias that impact the frontal and temporal lobes. Read the full post here

Platitudes, shame-and-blame games, and avoidance of introspection on complex causes

I’m concerned at the way some persons associated with the field of elder/ dementia care spout platitudes and stereotypical blame/ judgments in public and social media forums. I know these people mean well, but from what I understand, such statements don’t convey anything new or useful. Worse, they may harm the situation, for example, they alienate many family caregivers who feel defensive and may hesitate to ask for information and help, assuming they will not be understood and will just be criticized as persons who lack sufficient love, duty, or culture.

I hope my statements in this blog don’t offend anyone; I am merely sharing my thoughts and opinion as a possible area to ponder on. Let me explain my concern.

Let me take platitudes first. I think platitudes are simplistic but often considered so correct and profound that they stop people from clear thinking or deeper investigation into possible causes and solutions. They have a preachy “you should” in them, but nothing helpful in the form of suggestions on related “this is how you can”. And because they are simple one-liners, they ignore many relevant aspects that affect relationships and care.

Take, for example, statements like “our parents sacrificed everything for us,” and “our parents gave us love, we should love them” or “our culture respects elders” or “we must always make our parents happy.” I’ve yet to meet anyone who disagrees with them, at least publicly. Prima facie, these seem good and moral and cultured. More important, it seems like all we need to do is love and respect and care for our parents like any good person should, and there would be no problem at all.

The reality is far more complex, both in terms of the complicated family relationships and in terms of the difficulties adult children face while handling multiple responsibilities and making compromises and choices.

Let me take just one aspect to elaborate–an implicit assumption that anyone, just by virtue of crossing an age threshold and having a child, is an unquestionable model of great parenting and selfless love.

Many of us in India have recently viewed a series on TV that talked openly of some problems usually swept under the carpet–things like female foeticide, dowry harassment and related violence/ killing, parents forcing children to marry, sexual abuse of children by elders and guardians, domestic violence. Who does these acts? Are there no elders amongst the perpetrators? And do they all die before they cross the age of sixty? The TV program provided alarming data and statistics regarding the prevalence of these problems. Though the show audience looked surprised when the data was presented, I’m willing to bet that most of them were well aware of these problems, and have seen them in their immediate family/ social circles, or even experienced them personally.

Read the full post here

Stepping back, stepping forward into a new year

A new year begins. Here’s to hoping that all of you who believe that such beginnings matter are finding yourself poised well for the future, happy with whatever you’ve decided to do or not do, or happy that you shall not decide and let yourself go on with the flow. And hoping, too, that what is available to you–time, energy, capabilities, moods, support systems, whatever–is aligned to your choices and directions.

In one sense, an year is just another collection of days, with the first day of the year being notional and conventional. But this convention, a beginning marked by a number, also gives us an opportunity to pause and think before we venture forth. It provides us an occasion to consider options and make choices and decisions which we may or may not implement in the year that follows.

To me, new year resolutions have never been a big deal, because I make resolutions and changes even without the year-beginning marker. But this year I am choosing to be especially soft and gentle with myself, the way I often suggest to other caregivers and ex-caregivers 🙂 I am staying free of new commitments because I would like to play with the possibility that I can be curious and explore–and resolutions (even a resolution that determines that I must be curious and explore) can be binding.

For the last few years, I’ve been starting the year with a 31-day blogfest (one blog a day all through January), but this year, I am skipping that blogfest to release spaces within me–spaces of time, energy, mindset, emotions. I shall be continuing with activities I am committed to, both on the personal front and in areas related to dementia care. But hey, I may use the rest of my time to indulge myself in luxurious activities or just do nothing or I may use it to ponder or explore…

I think this could be an interesting year ahead. I hope that is true for you, too.

Till the next post, then.

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Seven months after mother’s death: updates and musings

It is seven months since my mother died, and I sometimes get queries on how I am doing, so I’m sharing an update.

My mother’s death meant I lost the person my life had been revolving around for the last several years. My sense of identity changed. My role, responsibility and activities needed a rethink. Given the sweeping change caused by her death, I think I’m handling my situation well enough.

I am living a reasonably active and productive life. While I have not firmly decided the way I will divide my time and energy across current and new activities, I am clearer now than I was some months ago. Redefining my life activities and directions will take more time, but that’s okay; I prefer to proceed cautiously and experiment with small changes, see what works, what doesn’t, and tweak things rather than do something dramatic and then have regrets.

I continue to face challenges on the emotional front, where my readjustment is slower. I continue to ponder over my new identity, my desires and my possible prioritizations. And, I also try to understand what “moving on” means. I tell myself that while a situation may change abruptly, the related habits and personal characteristics take time to change, and that well-set patterns have an implicit inertia.

My years of caregiving changed me in many ways. I am different in what I like to do, what I find important, what I am curious about or concerned about, what I feel about issues and incidents, what I want to buy or see, and so on. Some of my earlier friends now have life direction, interests, and priorities that are very different from mine, and there may not be enough commonalities to resume friendship. Our paths have diverged, and I am not much in touch with them. I am trying to make new friends, but my somewhat introvert nature makes that tough.

Seeing my mother’s decline and staying emotionally close and connected through the process, is helpful in the process of closure, but even now, not a day passes when I don’t think of her or miss her in a gentle way. And there is a sense of loss I experience when I see how she spent her last several years alongside how her peer group is faring.

In the past few months after her death, I have met my mother’s friends and peers, many of them after several years. They ask me about her last few years, or start telling me stories from their shared past. And they bring back memories of a mother who was younger and more active. As I talk to these friends of my mother, I notice how, though they are my mother’s contemporaries, they are physically active and cognitively sharp. I become acutely aware of what my mother could have been like without her dementia, and how different our interactions would have been. It hurts.

It will take time to find my new equilibrium of friends and interests and to find my peace with the overall loss. I also know this will need effort on my part, and this is what people call “moving on.”

But what is “moving on?”

I sometimes have people advising me that I should not think of the past and “move on” and forget what happened because now I am “free.”

I find that approach strange and unacceptable. It assumes that my life was a black hole when I was a caregiver, and that is not true. My years as a caregiver are an integral part of my life. They had their ups and downs, like any other phase of life has. The years involved work, responsibility, and tension. They also gave me the fulfillment of staying emotionally connected to my mother, they taught me many things about life, identity, joy. They changed my perspective about what matters and what does not, what dignity is, what connection is, and so on.

As far as I understand, “moving on” is something that happens all the time, for everyone. I think any “moving on” can be robust and wholesome only if it involves resolution and peace and consolidation of lessons learned. It cannot be achieved by amnesia or denial or pushing the past under the carpet.

Anyway, I have started consolidating my dementia care thoughts and my experience sharing, hoping that sharing and structuring will help me neaten my mind and perhaps help others. As part of this, here’s one e-interview (A Caregiver’s Role) and below is a video where I share my late stage dementia care experience. (You can also view it directly on youtube here.)

Main links referred to in this post

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Creating online dementia care material in Hindi: my experience so far

For the last few months I have been making Hindi material for supporting dementia care and uploading the material to make it available online. Here’s a short blog entry on my experience so far.

The background: Over a year ago I started worrying about the paucity of online (and print) material in Indian languages for dementia caregivers. This “worry” was active enough for me to wonder what I could do about the lack of material. My concern was spurred after someone in Madhya Pradesh contacted me – he was using Internet on his mobile and wanted material in Hindi so that he and his family could better support an early-onset dementia patient. I helped him through phone calls and by sending across some material I had. However, I felt concerned about how difficult things must be for someone like him who wanted support. Around July/ August last year I started exploring options for creating Hindi material myself. A few months later I made my first Hindi video and placed it on youtube, and in December I shared my thoughts and experiments in a 4-part blog entry (For part 1 of this series, click here: Adventures in Hindi Part 1).

Creating material in Hindi was not easy work. I did not have conventions to follow about the type of Hindi and the way dementia is explained in Hindi; I had to base my decisions on approach and style on the experience I’d had providing help in Hindi over the phone and in person, and, of course, my instinct as a caregiver and a volunteer. Typing posed its own challenges, as typing in Hindi is done using transliteration, so one has to remain alert about when this transliteration messes up spellings. Plus, of course, my Hindi needed brushing up.

One more deterrent was knowing that creating online material in Hindi was essentially a gamble. I knew people checked online for cricket scores and gossip about superstars in Hindi, but I had no idea whether people were looking online for information on dementia in Hindi. Even if there were such people, I had no idea how to let them know about my site so that they could check it out for at least some pointers to help them.

But I can be stubborn when I want to, and so once I decided to try my hand at it, I continued to create and upload stuff in Hindi, let some people know, and leave the rest to word-of-mouth, google, cross-links….

Here’s the current status of my Hindi work online: I have created a full-fledged website in Hindi on dementia care (Dementia Hindi ) and also uploaded four videos on youtube on wandering, helping patients with daily activities, communication, and understanding the relationship between dementia and Alzheimer’s (they are also combined into a convenient playlist: click here: Playlist: Hindi dementia/ care uploads). My latest video, on dementia and communication, was uploaded just a few weeks ago. Here it is:

So, what’s been my experience so far?

I’m relieved (and happy) to say that people have been visiting the Hindi website and viewing the videos. Not in droves, no, but enough for me to feel that the effort was worth it. Especially so as some visitors are from far-away cities I have no contacts in, such as Jamshedpur, Lucknow, and Indore in addition to the expected Delhi and Mumbai. Not all visitors are from India, interestingly, and apart from places like the USA and UK, I’ve also had visitors from the Nepal, Qatar, UAE and others 🙂 Some persons have even contacted me using the contact form, sending their queries in Hindi (typed using Roman script). (I responded the same way).

The videos have been viewed, too. Anyone who has checked out youtube for dementia information in Hindi would have noticed that available material (other than mine) is usually dubbed interviews, and some translated authoritative informational presentations. Overall, the list is so small it takes barely a couple of screens. So when I uploaded my videos, I had no clue whether anyone would even reach them. But of my 4 videos, 3 have been up for some months, and each of them has a viewership of over 200. Is that good enough? Is it bad? What number does one compare it with?

It is not as if there is a wide choice of Hindi material and I have a baseline to compare it with 😦

The way I see it is, this viewership is encouraging enough for me. It is far more, incidentally, than zero, which is what my viewership would have been if I had not put up the videos. Even without any direct touch with people/ publicity, even without press releases and conferences declaring the presence of this material, people reached it and read/ viewed it. And hopefully benefitted…

The beauty of online material is that once it is up and available, it remains available without additional effort, and so more and more people can view it as and when they become aware of it or get a link or locate it in a search.

My summary so far is that yes, there seem to be persons who will read material or view videos in Hindi (and possibly other Indian languages) if these were made available. I think catering to this potential audience is just not being taken as seriously as it deserves.

I’d also like to share that I sometimes meet volunteers in India who feel that there is already enough online material on dementia care and nothing more needs to be done on this front. These volunteers are often part of forums where they regularly exchange links to the same articles, recommending them to each other (not always reading them, but assuming others would benefit by doing so).

I feel these people haven’t considered a number of aspects. For example, they may not have considered whether the available material is:

  • understandable and usable by audiences in India (fitting into the cultural context)
  • in languages that people can read/ understand )
  • with links in forums such people can access )
  • accessible on the type of online platforms such audiences use )
  • accessible to people not in metros )
  • accessible to people who don’t have online access/ find it expensive)

I could expand the list into a much longer one, but I’m sure you get the point 🙂

I remember a comment one person made after he read some of the standard caregiver material he’d downloaded from one non-Indian site; he said he’d shown it to his family but they discarded it because the persons it showed were not Indians and the houses they showed were not middle-class Indian and the methods they described were not directly usable in India. (Like bathing tips that assume baths in tubs, I suspect) “We are not like these people; their ways won’t work for us,” he told me. His comment reinforced my impression that a good caregiver manual written by an Alzheimer’s support organization in some other country cannot always be used directly by all sections of people in India.

So, in my opinion, there is not enough suitable material in India given the diversity of our people, the sheer number of languages, the geographical and economic spread, the enormous awareness gap to bridge and what not. The gap between what is needed and what is available seems huge to me.

And here is my request to you, whether you are a volunteer or a caregiver who has experiences to share: if you are comfortable enough to create material in an Indian language — whether just talking of your experience, or sharing some structured material or some data — please do consider it. The online space is open and waiting for you.

Maybe the material you create or the video you make will not go viral. There may be no award to be won. There may be no appreciation/ brownie points from peers. But the one person who reaches your material could be someone whose life will be made different by reading or hearing what you have to say.

Main links referred to in this post

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Living with Dementia, awareness, images, stigma, quality of life: a perspective from India

Every September, those of us whose lives have been changed by dementia find ourselves introspecting about the environment around persons with dementia and their caregivers. We find ourselves building up hopes that in future, the dementia and care situation will have more dignity, an improved quality of life, and more support. Years of being the main caregiver for my mother has made me deeply concerned about dementia awareness and care in India, and I, too, ponder on these issues.

A few weeks ago, I saw a report that discussed how many existing “frames” used to depict dementia are negative/ unproductive and how alternate frames should be used to depict a positive picture and convey the nuances. Then, as I was still piecing together my thoughts on the matter, I realized that the theme for World Alzheimer’s Month 2012 is “Living together”. Alzheimer’s Disease International also plans to release a report on the stigma aspect. I look forward to seeing that report.

(BTW, for those who unsure of the relationship between dementia and Alzheimer’s : dementia is the name given to a group of symptoms, and Alzheimer’s Disease (AD) is the most common–but not the only–disease that causes dementia. Most dementia-related work is done under the Alzheimer’s umbrella by associations with names that include the word Alzheimer’s (but may not include the word dementia), a nomenclature that sometimes confuses and ends up excluding those non-AD dementia caregivers who assume the material/ advice will be AD specific 😦 )

Meanwhile, I’d like to share have some thoughts, mainly on how dementia/ care experiences are influenced by the culture and images around dementia, how countries differ, and some lessons for the concerned persons, especially my peers in India. These are just my personal thoughts, not an expert opinion nor a “report” based on any “study”…

…and I’d love to hear your thoughts, too.

I see persons with dementia as major stakeholders in any dementia-related strategy. We already have millions of persons with dementia who try to navigate their lives in spite of the disadvantages dementia imposes, and we have millions of caregivers who try to understand and support them (but don’t always manage to). Medicines and research are also important, of course, and must go on in parallel, but medical research cannot be the sole focus. A world without dementia is pretty far off, because hey, we have millions with dementia already here amidst us, right? Also, current medications are few, not applicable for many diseases that cause dementia. These treatments work on some persons but not others, have side-effects for some persons, and do not reverse dementia. It will take years of intense and sustained research to create enough effective and safe cures adequately tested on humans.

In the meantime, many people continue to “Live with Dementia”.

So I really like this year’s theme: Living with dementia. I like the fact that it focuses on people, on their situation and surroundings, and shows sensitivity to the discrimination and stigmas they may be facing. Living with dementia seems like a wholesome focus. Not struggling with dementia, trying to “defeat” it, or “surrendering” to it or “giving up” or being seen as “negative” or “lacking faith.” Instead, accepting what is there, working with what can be done, focusing on improving quality of life, retaining connections, leading enriched lives to the maximum possible extent.

Dementia care cannot depend just on medical support. It cannot even depend solely on the institutional infrastructure available; most of dementia care occurs in home settings. The care therefore depends a lot on the environment around it: the combination of images and stories around dementia, such as how society perceives the symptoms, the conventions for interacting with people showing such symptoms, the available body of caregiving knowledge, perception of the role of doctors and medication, and so on. Published caregiver manuals and guidelines are only a fraction of the environment around dementia care; the overall environment combines multiple factors like culture and religion, information available in articles, credibility of sources, newspaper depictions, depictions in fiction, mythology and movies, the history, and the societal conventions of how elders and people behaving strangely and differently are treated.

Oh, and also on whether that society even acknowledges such persons openly or whether it expects families to hide them away 😦

Let’s consider the dementia journey, which typically spans years, even a decade or two.

Read the full post here

Sharing thoughts with those considering body donation: the importance of preparing

After my mother’s death and my blog entry on how I had donated her eyes, brain and body, I got several queries on body donation. I had planned to do a full-fledged well-researched entry with data on the topic but as I’ve not yet got time for the full entry, I am doing a quick post – talking about what I consider the most important factors in being able to donate one’s body after death.

This post is about the importance of being prepared.

You see, no one expects death to happen. Even when we see someone obviously declining, we are still unprepared for the actual stopping of breath. When that happens, there is a shocking finality to it. And in that shocked state most of us slip like automaton into the stuff that follows.

Luckily for the just-bereaved, there are people around who help. These people–relatives, friends, neighbors, and colleagues—they call the doctor for the certificate, they dress up the body, they spread the word and even handle the condolence calls. These people find out about the nearest crematoriums (or they already have the data), they clear space in the house to place the body so that people can pay their respects, they find out about morgues, and get the municipality forms for registering the death. They know which priests to contact. The bereaved may have to provide some preferences and criteria (I want to wait for so-and-so relative to arrive first type of things), but a lot of the organizational nitty-gritty depends upon the community expertise immediately made available. People even take over the cleaning of the house and the arranging of tea or food or whatever.

Most of what follows the death thus goes according to the typical script. The relatives arrive, things are done in ways that are acceptable to the community. Everyone needs to pay respects, everyone tries to get closure.

So what’s this got to do with body donation?

The point is, there is no large pool of knowledge or experience for potential body donating families to draw upon at the time of death. Relatives and friends (who know what to do under normal last-rituals situations) are clueless on how to help for the alternate form of disposal: body donation. They are unsure of what’s going on, and perhaps unprepared or outright uncomfortable with this deviation from the norm. Relatives who were unaware that the family may consider body donation may mutter a protest or withdraw because of their discomfort. That adds to the overall awkwardness and tension.

Read the full post here

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

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

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

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

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

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

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

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

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

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

Read the full post here

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. Read the full post here

Impermanence, Death, Closures and Continuity through Body Donation

In brief, my mother died at home two days ago, on Sunday evening from aspiration pneumonia. In accordance to her wishes, I donated all the parts of her body that I could. Her eyes went to the eye bank; her brain went to the brain bank for research; the rest of her body went to a medical teaching hospital for students studying anatomy. Again, as per her wishes, her body was at no point put up for viewing, and no other rites were held.

These various body donations put a dignified, respectful and heart-warming end to a life that had been racked with challenges and deterioration for many years now. My mother looked peaceful, and it was the sort of end she always wanted, and I was glad I could respect her wishes.

Sharing below some of what happened.

The day started much as normal. My mother had been stable but deteriorating. The March beginning blood tests were normal. She had problems swallowing and would sometimes make gurgling sounds; they sometimes subsided in a short while, but sometimes needed medicines, including antibiotics. My mother was spending most of the day sleeping and not showing any interest in people around her most of the time.

It was around mid-morning on Sunday that she started the gurgling again. It seemed worse than the minor kind that subsided on its own, so we made her lie on her side, and called the doctor. Her expression showed no discomfort in spite of the gurgling sound, but her breathing was shallow and rapid. After a while, her body seemed warmer than normal.

Hubby and I surfed for gurgling while waiting for the doctor. We downloaded pages and PDF files with scattered, even contradictory information. Some people said gurgling came and went, some gave the gurglers just a few hours or days to live after it started, some gave them a few months, some said there was no correlation. Some explained that gurgling sounded bad to the family and worried them, but was not actually a hurtful experience for the patient. One document cautioned medical practitioners not to use the alternate term for gurgling (death rattle) in the presence of family members.

The doctor came, checked her, made me hear the gurgling through the stethoscope placed on her chest, prescribed antibiotics to be given via IV. He initiated the process of a nurse coming over with the IV stuff, while hubby went to buy the medicines. After a while, my mother’s gurgling reduced, and she seemed very tired. I tried to talk to her, but felt she wanted to rest. We cleaned her, and let her rest. Things seemed better with her. Meanwhile, we were following up for the nurse with the IV, and as soon as we realized the nurse would be arriving shortly, hubby went to my mother’s room to tell her that.

She was not breathing.

Read the full post here

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 finally created a special section 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 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.

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 🙂 ]

(Edited in February 2013: When this post was written, the resource section had been created on my personal site. I have now shifted the section to this blog as part of a consolidation exercise, so that all my experience and opinion-sharing related to dementia is now at one location. The links in the post have been corrected to reflect the correct links)


Edited in 2014 to add: The current pages in this section are as listed below:

Resources: If you want to help caregivers/ spread dementia awareness


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yes, we need these tips pooled and talked about.

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

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

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

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

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

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

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Human costs of concealing a dementia diagnosis

Sometimes, even after a doctor has confirmed that a patient has an irreversible dementia, the doctor may not tell the patient or family about it, thinking there is no cure, so nothing can be done, why upset the family unnecessarily? The note below expresses my view on this. (I am not talking of situations where diagnosis is delayed because some doctors do not know enough about dementia, which is a vast topic of a different nature)

Doctors sometimes debate on whether or not they should inform patients / their families that the patient has an irreversible dementia. Some feel that since there is no cure for dementia there is no point in communicating the diagnosis (they feel it would be disheartening, or pointless). Others are confused on what is right (to tell or not tell).

Here’s a fact worth considering: knowing a diagnosis doesn’t just enable a patient to get medical treatment; it also helps everyone concerned to see the patient’s behaviour and deterioration in the proper context and make changes to improve the overall quality of life.

The fact is that the patient may be worried about what is happening to his/ her memory, abilities, emotions; the patient may be scared, isolated, angry, unable to cope.

The fact is that the behaviour of dementia patients, if not understood, often also bewilders and hurts people around the patient. Families undergo emotional pain and conflict. They sometimes even split up or fight legal cases because the patient misunderstands/ forgets things, says wrong things, flings accusations, takes wrong decisions, gets violent, or even acts in an uninhibited or “vulgar” way. Such painful situations could have been avoided if family members had realized that the behaviour was because of a dementing disease. Family fortunes are sometimes squandered because families, unaware of the dementia, let the patient take major decisions.

Essentially, not knowing that the patient has dementia means that families continue their old ways of interacting with the patient, which often makes problems worse for everyone concerned.

Many families feel very upset when they realize later that their doctor had known about, but chosen to conceal the dementia diagnosis. Family members deeply regret years wasted in bitterness and bewilderment which knowledge about dementia would have reduced; they continue to feel guilt about things they said or didn’t say, things they did or didn’t do, for years after the patient’s demise.

On the other hand, families aware of the diagnosis are able to change their ways of talking to and helping the patient. They are able to arrange things so that they and the patient can enjoy what is still possible rather than only notice the reduction in capabilities. All this improves the quality of life of the patient and the family, even if the underlying dementing disease cannot be cured.

Families aware of the diagnosis are also able to re-arrange their lives to minimize the impact of dementia caregiving on their other responsibilities. They can plan for the caregiving required across years by rearranging business and personal commitments, relocating their home, changing jobs, deciding how to share work with siblings, etc.

Then, of course, let us consider the patients’ right to know, especially as they may be worried by what is happening to them. A lot of patients diagnosed early have talked of the sheer relief of knowing that there was a reason they were facing the problems, that merely knowing a diagnosis reduces their stress and makes them more capable of handling things, even if there was no medical relief possible for their form of dementia. They feel better off knowing the diagnosis though they may not always remember it (thanks to dementia).

I believe the debate on whether doctors should reveal the dementia diagnosis is not confined to India, it exists in other countries too. Perhaps some doctors don’t understand the human cost of their silence about the diagnosis; to these doctors, if there is no medicine, there is no point telling people of the problem. Their concern centres on only the medical aspect, and they view the debate of whether to tell or not as “academic.”

Currently, even if the doctor has figured out that a patient has an irreversible form of dementia, the doctor may or may not tell the family; the concealing or revealing of the diagnosis depends on the individual doctor’s conviction about revealing the diagnosis, and how knowledgeable and sensitive the doctor is about problems beyond the ones medicines can solve. The problems of living with dementia, so to say. Not just the academic listing of symptoms, but the facing of the problems in real life. Currently, go to one doctor and you will get appropriate information and support; go to another, and you may hear something wishy-washy about how such problems happen to some people when they age.

Ideally, it would be great if patients and families were confident of some sort of minimal level of information and support from doctors, regardless of the doctor’s personal convictions.

From what I remember, some decades ago, there was a similar reluctance amongst many doctors regarding revealing a “cancer” diagnosis. That has changed, possibly because cancer has been “de-demonized”.

Regarding dementia: maybe if many patients and families describe how knowing the diagnosis improved their quality of life significantly (even though dementia cannot be cured), more doctors will appreciate that patients and families are stakeholders who need to know what is happening. They may evolve appropriate ways to convey the diagnosis and related information, discuss these, refine them. And maybe even create, as a community, suitable guidance that all doctors will conform to.

Definitely the patients and famililes would be better off for it.

This is my opinion; I’d love to hear your views.

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