Alzheimer’s/ dementia information in Assamese (selected excerpts from Dementia India Report 2010: Assamese version of executive summary)

The Assamese version of the Executive Summary of the Dementia India Report 2010 has been made available by ARDSI Guwahati Chapter. This report gives an overview of dementia and care in the context of India. Some selected excerpts are presented in this post for the convenience of persons who read Assamese, to perhaps interest them enough to read it or share it. View/ download the full report at the site of the Guwahati chapter of ARDSI (Alzheimer’s and Related Disorders Society of India) at : Dementia Report in Assamese, PDF file (1.1 MB)

Some excerpts from the report have been posted below.
Here is a paragraph about dementia.

small paragraph on dementia in Assamese

Diseases causing irreversible dementia, and their typical early symptoms
table in Assamese giving dementia causing diseases and their typical symptoms

Modifiable and non-modifiable risk factors for dementia

Modifiable and non modifiable risks in Assamese giving dementia causing diseases and their typical symptoms

The impact of dementia at various levels
The impact of dementia at three inter-related levels in Assamese

You can view/ download the full report at the site of ARDSI Guwahati, at Dementia Report in Assamese, PDF file (1.1 MB)

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Dementia In India, 2015: An Infographic

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

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

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

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

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Some information in Kannada (Dementia India Report 2010: Kannada version of executive summary

The Kannada version of the Executive Summary of the Dementia India Report 2010 was released by NIMHANS, Bangalore, in 2011. I have now made it available on my Dementia Care Notes website for ready reference by anyone who is interested. I am also including a few excerpts below, hopefully to get some of the Kannada-reading persons interested enough to either read it or to let others know about it.

cover of Kannada version of the Executive Summary of the Dementia India Report 2010
You can view/ download the report here: Kannada version of the Executive Summary of the Dementia India Report 2010, PDF file (1.18 MB)

Some excerpts from the report have been posted below (snipped as images). You can click on these to view/ download the full report.

Diseases causing dementia, and their typical early symptoms
table in Kannada giving dementia causing diseases and their typical symptoms

Modifiable and non-modifiable risk factors
Modifiable and non modifiable risks in Kannada giving dementia causing diseases and their typical symptoms

Growth in dementia cases expected over the years (India) (numbers in millions, graphed using age groups)
Growth in dementia cases expected over the years (India)

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Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry)

It’s over six years since I started sharing my experiences and thoughts on dementia care, and it has been a strange, unexpected journey. As I step back a bit to consolidate, I’m using a two-part blog post to document what I’d done so far and what I am considering for the future.

In this part, I write about what I’ve done so far, what influenced my choices about sharing and my chosen way of sharing, and some data on where I am right now.

The unplanned beginning

My mother’s dementia symptoms had no clear onset; they crept up and kept growing till they took away pieces of her life and mine. I was clueless, unprepared, and unsupported. The dementia symptoms were devastating enough, but the lack of awareness and support around us made coping far more difficult. Even when my mother’s dementia reached mid-stage and she required full-time attention and availability, people around me were disbelieving, critical, or busy in their own work and priorities. Sometimes my mother and I would end up spending stretches of days with no one but each other for company. I was perpetually exhausted.

I began a few tentative blog entries around mid-2008, just to feel less alone. I didn’t expect anyone to read what I wrote; I didn’t even want anyone to read it. My sporadic blog elicited occasional emails from persons saying they could relate to the situations I described in my posts. The catharsis provided me enough relief to become more proactive about my caregiving role. I read more books, even attended a conference and some caregiver training. I realized that, like me, many caregivers experienced isolation and overwhelm. I began thinking, “No one should be so alone through such stuff,” and then, “Would my sharing my experiences help?”

The nature of my participation began changing slowly, over the months. Whereas earlier I read books, and attended courses and support groups to pick tips for myself, I began doing so to share with others and support them. I equipped myself by reading voraciously, exchanging ideas whenever I could, and even attending a “master trainer” course, intended to “train the trainer.” My understanding improved, I felt more involved, and my canvas widened.

I was still performing the actual care tasks for my mother on many days, and coordinating them on others. I had to remain alert about crisis, and available at short notice, but my support had improved because my husband had adjusted his travel and workload so that we could take turns/ share the work, and I had also got a competent attendant who genuinely cared for my mother. It was possible to take out some relatively worry-free hours for other work.

So there I was, feeling more involved and determined to do my bit, looking for ways to contribute. Blogging and content creation seemed a good way to do so.

The pieces of work added up

My online work has essentially been built as a series of small steps, all done from my desk at home. I picked up work I could usually break up into pieces I could squeeze into available time, stopped when I was busy with care and other responsibilities, picked up when I had some spare time or energy. I could pace my involvement.

My blog was a collection of random personal thoughts, and as my blog picked up pace, I began thinking about the lack of structured material. I had always been unhappy that the available material on dementia care was not tuned for India because it assumed a different social context, a different culture, and a different level of institutional support. I thought about creating more suitable material but lacked the confidence to proceed. I was also unsure whether I’d have the energy to do a reasonable coverage. It seemed too vast a topic, and though I was better informed now, at times I felt like a helpless caregiver, not someone confident enough to undertake such a project.

Even so, I sometimes caught myself mentally drafting material suitable for a caregiver in India, written from a caregiver perspective. And then, one day, I thought of a structure to fit those (still only in my mind) pages. I already had a personal site, and I could add a section on dementia to it. It was just a matter of typing what was in my mind. I took the plunge. A fortnight or so later, I had created a section on dementia on my personal website. This was around the beginning of 2010. I felt so diffident about my audacity (of creating material) that I didn’t do much publicity, and was scared someone would read the pages and find them useless or bad.

But the stream of ideas would not stop. I felt I should have done more pages, a better and more complete job. And I felt that dementia care in India was a large and important topic that deserved a site of its own, not merely a side-show on a personal site.

As before, I was not sure whether I wanted to do the work. I had no idea whether it would help anyone; I had absolutely no reason to believe anyone would even bother to read it. On some days I was scared that if I set up a website and no one came, my work would be a waste. On other days, I was scared that I would create something awful and full of mistakes and that someone (huge and powerful and authoritative) would publicly humiliate me for being presumptuous enough to create a website. I was apprehensive whenever I thought of it, which was often. Because, again, I was mentally drafting more and more pages of what such a site could contain. Ideas abounded, as did doubts. The site would need some illustrations; could I draw them? The site should include interviews; how would I get them, why would anyone talk to me? Would I have the stamina to put together so many pages? My caregiving responsibilities were increasing….Did I really need yet another stress in my life?

I think it took around four months of mental drafts and structuring before I felt my brain would boil over if I did nothing, and so I began actual drafting. And it took some more time before I took the plunge to ask a volunteer I knew for some help in identifying caregivers who may be willing to give interviews. Then I picked up pace and started approaching some caregivers and others on my own, too. Creating online material required learning a lot of technical stuff and I did it in small packets. I remained conflicted about the whole idea: I was scared that I would be visible, and scared that I would not. I would work in spurts, then stop, never quite sure I would actually let the site go live. But the matter was now there, the background work done. One day I told myself, see, if it doesn’t work out, I’ll just delete the site. It’s not like I’ve taken any funds from anyone or that I owe anything to anyone. No one needs to know that I tried something and failed.

So I tamped down my personal website section on dementia, and geared up to make the full-fledged website operational.

Dementia Care Notes went live in the later part of 2010, a site reasonably complete but somewhat different from what it is today. There was barely a trickle of visitors for several months. I thought I’d sunk in a huge amount of energy into something useless. Worse, some site features required a lot of ongoing effort. For example, that initial site included a section with commentaries and summaries on latest published research papers, as well as promptly updated summaries of dementia-related news from India. This type of feature sucked up a lot of energy, and I started regretting my decision to have a site at all. No visitors, and a lot of energy being spent. What a fool I’d been.

But there was no point pulling off the site, either. So I streamlined the back-end and rethought the content approach. I removed items I considered low “value-add” and also removed content of the sort already present at many other sites (research summaries, for example). I added more material specifically meant for caregivers in India. I expanded pages, and created and added illustrations. Since I didn’t have enough of a personal or “social network” contacts to help me spread the word, I began reading up basic concepts related to search engine visibility. Miles to go, and all that…

Dementia Care Notes was an English site. It took a while for me to realize that I should be considering a Hindi site, and also videos in English and Hindi. For every new type of content preparation and presentation, I went through the usual agony of hesitation, followed by weeks of mental drafting, and so on, before taking the plunge.

I began creating and adding English and Hindi videos to Youtube around later part of 2011, one video at a time, with the video releases often spaced out by months. (Two channels: my personal interviews and videos with information and suggestions for caregivers ). My Dementia Hindi website went live in early 2012. Sometime along the line I realized that some of my material may be interesting to volunteers who wanted to help caregivers. So I put together a section for volunteers, this time on my blog (currently at: Resources for Volunteers). I hesitated a lot for this, too, but then as always I thought, if it doesn’t work out, I’ll just delete the pages. And I kept uploading my presentations on Slideshare, too, just so they were available if someone wanted to have a look. Very recently, I also began posting on a Hindi blog.

My confidence increased along the way as I was able to connect with many caregivers and others, and thus able to improve/ validate my understanding. I kept amending and improving my material alongside, and I now make it a point to periodically review all my website material to ensure it reflects whatever I know and can suggest based on my updated understanding. But I also know that I am not an expert and that my knowledge can never be complete.

Along the way I have ended up with more visibility than I feel comfortable with. This visibility has meant getting calls/ emails for an interview or so sometimes, or an invitation to speak at a conference or to coordinate a meeting. I go through an agonizing process every time I respond–on one hand, I know that, given my concern about this area, I should speak up, but on the other hand, I want to curl up and hide. I end up speaking, but I need a lot of preparation time to psych myself up for the event, and I need a wind-down time to recover. Each such interaction drains me.

To create online resources, I have needed to learn several new skills; the effort has been substantial. I have done all the work alone, not just the writing. For example, I learned about setting up websites and hosting. I learned about WordPress and its plugins and themes, decided what would suit my site, etc. For illustrations, I had to conceptualize them, and learn enough about graphics packages to actually draw them. When I decided to create videos, I had to learn about audio recording and editing, and video recording and editing, screen captures, and so on. And then there were the loads of things needed to keep the site operational and safe and backed up and so on… As I did not know anyone else using a similar approach, I didn’t just have to learn the skills, I had to first identify which skills were relevant and locate suitable resources for them. The process was invigorating, but also somewhat lonely.

I didn’t just learn based on what I wanted to make, I have been doing a lot of exploratory learning, too, so as to understand the possibilities and have a wider perspective about the context as such. I keep myself informed on areas directly or indirectly affecting my dementia work. I keep up-to-date with discussions, books, papers, and reports on dementia care, and also do small courses on topics that ensure I can follow discussions reasonably well; this includes health and medicine related areas and also areas on possible ways to convey messages–a vast range of topics like social psychology, critical thinking, online instruction, technology and media, and so on. Part of this helps me refine what I am doing; part helps me glimpse at potential areas of work; and part of it never gets used, but I don’t know what will turn out to be useful and what will not.

Some data:

I have no targets as such, but I glance occasionally at what I’ve done to see where I am. Here’s some data (as of the day of writing this blog entry):

I also respond to emails and interact on social media with caregivers, and once in a while, participate in conferences or training programs or support group meetings. I end up interacting with many concerned persons–volunteers, students, others. A quick glance at my email folder shows the emails exchanged run into thousands. And then there are the one-on-one face-to-face interactions with caregivers. It’s frightening.

All said, the numbers I share above are not particularly large. Many persons have distinctly more impressive stats for their work, and bigger social circles, and more connections. Me, I’m constrained by my diffidence and lack of targets and ambition. All that inspirational talk on “be the change” and “be positive” and how people want to “make a difference” doesn’t touch me; my sole motivation is a sense that I have no justification to waste my knowledge and skills. I cannot face myself if I know I could have tried to do something and I let my self-doubt hamper me. I may not end up being as bold as others are, but I try to stretch myself to the extent I can.

Someone once asked me, a few years ago, if I was satisfied with the stats and I had told him that, given that I had no reason to believe people would visit any material I prepared, the numbers were nice. The numbers were comfortably higher than zero, and zero is what the viewership would have been if I had chosen to not write. I marvel that I managed to get any audience at all, given that I was just someone typing away on her laptop.

That “it’s greater than zero” was not some cool, wise answer, or even a good one. It was a reflection of my utter cluelessness when I started work on dementia, my lack of a tangible target and my inability to have any dreams. I was a reluctant experimenter in an untried field. I had no baseline to use, no similar/ competing resource to compare myself with. The situation was trickier for Hindi material, which was a real shot-in-the-dark gamble. (When I see that the viewership of the Hindi material combines to over 30,000, I hope someone else decides that working in Indian languages is worth considering.)

My situation is different now. Even though I still have no targets and no basis for specific goals, I am aware that my choices involve trade-offs. I have too many ideas, far more than what I had when I started off. I know that chasing one idea, such as preparing a particular document, means I won’t be able to chase a different idea or prepare a different document. While I am now moderately comfortable with existing projects, I am also aware that, given my personality, I will go through an agonizing bout of self-doubt for any new project; it is a cost I pay for every initiative I take. I feel the need to make effective choices, because I know how limited my time and energy are. I’ll use the second part of this blog post for my thoughts on my future modality and effort.

Edited to add: The second part of this blog entry is now available at: Working for the dementia care domain: what next? (Part 2 of a two-part blog entry)

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Let’s share experiences on early symptoms of dementia

It’s been a while since I posted, mainly because I had several ideas and was not able to decide which one to pursue, but I’ve finally picked one idea to give a try, related to a major concern area I have: simple, effective ways to share experiences.

When I talk to caregivers, they often say they’d like to share their experiences, but don’t know how to. I’ve seen some Facebook forums that are excellent mutual support communities, but their contents are not visible to the public. Dedicated bulletin boards, too, are often private. What we also need are ways where caregivers can share publicly, even if they don’t want to reveal their identity.

So I’m trying my idea here to gather your experiences on one topic. If it works, I may repeat this for other topics.

I am inviting you, family members and friends of persons with dementia, to write a comment about some changed behavior shown by a person before he/ she was diagnosed with dementia. Perhaps this was something that made you contact a doctor. Or perhaps the behavior just felt odd, and it was only much later that you wondered whether that had been an early sign of dementia.

Add your comment to this blog post. It won’t take much time. Just describe an incident in a way such that someone reading your comment can picture it. So, instead of saying, “my mother’s behavior changed”, tell us something we can imagine, like: “My mother used to love socializing and also planning the menu for visitors. Then she stopped planning menus. She even began avoiding people. Maybe she had started facing dementia type of problems.”

I know many of you have hesitated sharing in some forums because of privacy concerns. Or you didn’t know an easy way to share. If so, posting a comment below may work for you, because you don’t have to give your real and full name; use a pseudonym or give part of your name or your initials. And your email id will not be visible when your comment goes live. Your privacy is ensured when your comment is visible.

So it’s over to you…

Please remember that every shared experience matters. The few minutes you take may help some other caregiver. It may help someone realize that the behavior they are seeing may need investigation.

Here’s all you need to do: Just scroll down a bit and you’ll find the place where you can leave a reply. Share any personal experience of changed behavior of a loved one before he/ she was diagnosed with dementia–the sort of behavior that, looking back, you think might have been an early warning sign of dementia. (And don’t worry about how well you write and all that, just write whatever comes from your heart 🙂 )

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Voices of persons with dementia

This post is about the importance of hearing the voices of persons with dementia.

I think it is important to create an environment where persons with dementia feel comfortable sharing their experiences and thoughts. I think we don’t get to hear enough voices of persons with dementia. I don’t think we try hard enough to hear such voices and get authentic glimpses of what it is to live with dementia. These glimpses will help us understand how we can support persons with dementia effectively while continuing to respect their abilities, desires, and choices. But I think persons without dementia often don’t pause to wonder what having dementia could be like; we oscillate between treating dementia as a minor inconvenience and the other extreme where “he’s not there any more”, missing out on comprehending a complex situation that impacts the person in multiple ways 😦

Some months ago, I got a call from a man whose father had been diagnosed with dementia (around mid-stage according to the son). The family was finding it very difficult to provide care and keep him safe, and they were tired and frustrated. The son wanted his father to understand and accept the diagnosis. He wanted his father to admit that his memory is a problem and that he cannot do things himself, and to cooperate with the family members, not be stubborn, not wander around, forget instructions, etc.

“We already know about dementia,” he told me. “It’s my father who has to accept it.”

So I asked him to tell me about his understanding of dementia and how it could be impacting patients and to explain which part of his father’s behavior was inconsistent with the symptoms or their consequences. For example, did he really expect his father to remember and follow instructions even though he knew his father was having short-term memory problems and also facing problems in understanding things?

The son was reluctant in the beginning, but a short while later, as I pushed him with some questions, he said, I never thought of it this way, and began using a different lens for the behavior that he had earlier considered stubborn and uncooperative. He started recalling and reinterpreting episode after episode, like how his father may have felt cornered or angry when family members acted annoyed/ angry with him and issued orders. I heaved a sigh of relief. Though he sounded unhappy that he and his family would have to understand and change so many things, he had started seeing the pointlessness of having unrealistic expectations that ignored his father’s diagnosis. This was not just about an MRI showing something or a word on a prescription; his father’s life was changing, and the family would have to find different ways of interacting and being together with him.

I’ve been a caregiver myself. After my mother’s diagnosis, I did not immediately register how dementia may be impacting her. She would not talk of her problems; instead, she became more critical and demanding, and it took me time to correlate this with her possible insecurity and confusion or with her fear that she was going insane and that she would be mocked at or locked up or exploited. My sensitivity to how dementia may be making her life difficult changed the way I communicated with her. I also started thinking of ways to make her environment safer and yet interesting enough in ways she liked it. She responded, and became more peaceful. Glitches and mismatches reduced over time.

Many caregivers have told me that they became better and more considerate caregivers after they began thinking about how the person with dementia may be feeling or what difficulties they may be facing. Problems and stress reduced, and the patients seemed happier.

It’s sad that we caregivers often get so overwhelmed and absorbed in our efforts to care for the person or to make them “behave” and “remember” that we forget how dementia symptoms affect them. We expect them to understand and accept the diagnosis but forget it ourselves.

So yes, if we step back and think, imagine, feel what dementia may be like, we become more sensitive and also more effective and respectful in our approach. If we think of how it is to be confused/ disoriented, we find it obvious that we would not want people to gang up and dictate what we must do.

Yet we must not forget that doing some dementia “role play” or “imagining” is not the same as “living with dementia”.

And when I say “living with dementia”, I refer to the life of a person who has dementia. I am clarifying this because some persons include caregiving experiences in that term, assuming an equation: “living with a person who has dementia” = “living with dementia”, an equation I don’t subscribe to.

According to me, it is presumptuous for non-dementia persons to claim they “know” what the dementia experience is like. They may be professionals who understand the brain and its function/ how the damage affects it, or they may be caregivers who have seen the patient deteriorate, but that’s not the same as having dementia. Mental role play/ projection may allow us a glimpse so that we can create better solutions or improve interactions, but our understanding remains limited. We may even be off the mark.

For example, howsoever much I try to imagine myself with dementia, I cannot immerse myself into that experience because my brain/ abilities are not affected by dementia. I can only speculate/ project based on theoretical knowledge and observations. Also, I am aware all through any “role play” that I don’t have dementia, and that after this uncomfortable ten minutes or one hour I will revert to my current identity and level of abilities. Part of me remains the safe “observer” who can snap out any time. I am not facing years of inevitable deterioration and I have no real reason to be angry or desperate or despondent about life as a whole, or dementia specifically. Nor do I need the shelter of denial.

Besides, every person is different, and how can I know how someone else, with their life history, patterns of thinking and reacting, would respond to the changed brain abilities and the knowledge of the diagnosis?

But we do need to understand how patients experience dementia because, in any illness, this understanding is integral for finding ways to support patients and their caregivers.

Gathering patient voices is tough for dementia because persons with dementia may find it more challenging to observe/ interpret what is happening to them, place it in the context of the diagnosis, and articulate it. The experiences may be frightening or depressing to recall and document, or the act of describing them may require excessive effort or focus. As the underlying dementing disease further damages the brain, such sharing becomes even tougher. If unaware of dementia prior to the diagnosis, patients may not even comprehend the diagnosis, especially if they are already mid-stage/ advanced stage. They may go through a denial phase. They may prefer privacy. Depending on where they live and the people around them, they may be wary of stigma. They are probably trying to squeeze as much life as possible while they still can. Why would they spend precious time and energy sharing painful stuff, an activity that will not help them?

Fortunately, some persons with dementia do speak out in spite of all this, because they hope that their speaking up will help others later. Their courage and honesty and their commitment to the cause is something I admire.

Some persons go public with their diagnosis, celebrities in their respective fields, and that helps people realize that dementia is not some remote, improbable problem that happens to persons who were not using their brains; dementia can happen to anyone, and has happened to reputed writers, rulers of countries, even Nobel-prize winners. (Examples include Sir Terry Pratchett and Ronald Reagan)

But I’m writing about persons with dementia who share their experiences in an ongoing way in public, not once or twice in interviews, but repeatedly through blogs and sites and forums. They write books and publish newsletters and run support groups. They create sustained campaigns to help others understand dementia, they give talks, participate in seminars and forums and committees, and describe day-to-day personal experiences for months and years. They may share incidents of their fears at night, their hallucinations, and their confusion in family gatherings, their increasing inability to handle new situations, their frustration at unsupportive infrastructure or insensitive people. They also talk of what they can do, their outings, what they enjoy, and so on. They make suggestions on what helps them in interactions, and what hurts them. They help us understand what sort of dementia aware environments would empower/ support persons with dementia. Persons like Norm Mac, Rick Phelps, Dr. Richard Taylor, and others.

And in addition to those who speak up in public, we have more voices in closed forums, which provide safer places to interact and support each other.

Before I “met” these persons, I had not heard voices of persons with dementia. My mother would mention a few things once in a while, but for most part, her dementia frightened her and she preferred not to talk about her problems. I had not met anyone else who had dementia and spoke openly about it. Even now, while I have read dementia experiences from outside India, I have not read any from India. Nor am I aware of any focused effort in India to encourage persons with dementia to share their realities and incorporate their ideas in design of systems and services. If there are such initiatives, I would love to hear about them.

Of course, persons vary in their experience of dementia, and so we need more voices to get a range of first-hand experiences. Hopefully more patients will find the environment supportive enough to open up. Even so, there are limits to what we can learn because, as dementia progresses, it affects communication and the ability to analyze/ remember. For example, we may never get data to understand how persons in late stage dementia experiences their decline, though caregivers and professionals may have conjectures about it, and persons in earlier stages of dementia may project their current experience to estimate how they will feel later.

In a way this reminds me of how 24-hour home caregivers often lament about people around them (friends, relatives, colleagues, even professionals supporting dementia care): “They just don’t understand what such caregiving involves” and “only someone going through this can understand.” I guess that holds just as true for understanding what it is to live with dementia.

Here’s to hoping that we’ll hear more voices of those living with dementia, including voices from India, because experiences vary across settings and cultures. And here’s to hoping that there are more and more safe, open spaces where such valuable sharing is possible and honored.

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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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Young today, a dementia caregiver tomorrow; let us involve the stakeholders

There is something very energizing about seeing young people buzzing around having rip-roaring fun, doing things, getting all charged up about causes–there is so much energy there that it inspires (except if one has to match it, because then it intimidates). But I think we underestimate what the young of today can do, and don’t give them the information they need to improve their tomorrow.

I refer, of course, to informing youngsters about some of the harsh facts about dementia and how it will hit them if they get yanked out of their lives to become caregivers 🙂

Youngsters are often involved in elder care through various schemes, typically involving improving the quality of life of elders through intergenerational activities, or doing some chores for elder care facilities. There are “adopt a granny” type of projects, and sometimes school kids may also be taken to spend an afternoon at an old age home, or do a craft project for some grandparent-aged persons, and so on. Play periods are fixed where the old and young finger-paint together, and some such intergenerational activities are held with dementia patients, too.

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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

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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.

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Ramblings of a failed manager, and a bonus video

This post is selfish, because it is about I, me, myself, but that’s allowed in blogs, right? I’m in this self-justification mood I sometimes slip into because I want to do so many things but cannot do them all, and I need to tell myself, hey, I’m doing all I can, okay? I tell myself to chill out rather than burn out. And to have hope that others will help if needed.

The trigger for my mood today is an email asking me about my “dementia old age home.” I get such embarrassing emails often: mails asking me about my “day care center” or “respite care center” or other “services” I must be offering, and which a desperate caregiver needs to use. I have to tell them that I’m sorry, I don’t offer any such service. Some visitors who look at this blog and at my Dementia Care Notes site assume there’s an office behind it. That, since there is so much matter on the web-pages, there must be an establishment behind it that offers much more. Offers real stuff, you know.

Let’s begin with the confession, folks. Creating stuff for the website, the blog, the other stuff I put up (articles, videos, presentations) are bulk of what I do. And I participate in various support groups and other online forums. And I spend time learning what I need to keep doing the stuff. That, and responding to mails and the consequent phone support for caregivers; I stay in personal touch with lots of caregivers, pouring out my heart and catching their poured-out hearts, and that takes time. Sometimes people planning to do stuff for caregivers contact me and I share my comments on their plans, or brainstorm with them. But I don’t offer day care or respite care or trained attendants and all that, I only hope others will.

For the curious amongst you, here’s this large enterprise and office that’s behind my work–me, the one person factory. Luckily a Nokia phone camera does not “capture” dust or X-ray the bookshelves packed with fiction and pop-science and other fun reads.

picture of Swapna office      picture of Swapna table
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