Dementia Home Care in India: a framework to understand it, and suggestions for caregivers and volunteers

As an ex-caregiver who tries to help other caregivers, I continue to be dismayed by how unprepared and unsupported families are through years of exhausting and heart-breaking dementia caregiving. Many families never get a diagnosis. Even those who get a diagnosis rarely get a realistic picture of how much they need to plan, what changes they will have to make in their lives, and how absent systemic support systems are.

Again and again, I find families clueless about the deterioration dementia brings. They do not know that dementia will keep worsening and that the person will become almost fully dependent. They have not registered that they will be using more and more of their time and money and energy for care. They often think dementia as memory problems; they do not know the person’s abilities will keep reducing. This will go on for years, and during this they will see the person deteriorate in heart-breaking ways. They start this journey unprepared, with no one holding their hands.

Almost all dementia care in India happens at home. Advice given to caregivers assumes many things about what families can afford and the time they have for caregiving. Families do not get a realistic picture for effective planning. They remain unaware of many potential problems. Possibly the advisers themselves do not understand the overwhelming and prolonged nature of care. And advisers do not appreciate that 24×7 home care differs from a day job of a trained professional who is part of a multi-disciplinary team. So a lot of their well-meaning advice is impractical because, though good in itself, the advice does not fit the family’s care context.

The fact is, dementia awareness and support in India is so poor that family caregivers have to create their own group of supporters. They have to plan for dementia caregiving and also for self-care. They have to plan finances for a marathon stretch of increased costs and reduced incomes. They have to see how to take out the required time and energy for years of care. They have to prepare for the emotional journey of caring and their stress and fatigue. They have to appreciate the limitations of the systems and support around them, and have realistic expectations. And all such planning has to be done early, because they will not be able to do much planning once they are submerged in intense caregiving.

Home care for someone with dementia is not a simple short-duration activity. Care happens for several years, and in the context of the culture and society and the family’s other obligations and desires. Many long-term decisions are made. We need to view dementia home care as part of this framework in order to understand and plan it better. We have to appreciate the limitations and then seek practical answers.

I have been mulling over this for a while now, and recently I put together my thoughts on such a framework along with some suggestions for caregivers and volunteers. Alas, there are far too many problems, and very few solutions or suggestions. I am not sure how much my presentation will help viewers, but it will surely give them something to think about. Maybe it will prompt families to derive practical approaches for their care situations. Maybe volunteers will find better ways to support families. You can view the presentation below, or view the presentation directly at Slideshare if the player below does not load properly.

Also, some similar posts and pages, and some resources:

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Working for the dementia care domain: what next? (Part 2 of a two-part blog entry)

I am currently trying to decide the focus of my future dementia-related work. I have limited energy and time available for dementia work, and so I need to make deliberate decisions on where to use them. Keeping my current online resources usable and relevant needs some ongoing effort (content updates, back-end maintenance etc.) and I also have to tackle queries I get, but where should I put my additional time and energy? Should I improve these existing online resources by adding similar content or enhancing existing content? Or should I work on something different?

(This is the second part of a two-part blog entry: The first part can be read here: Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry))

Fact is, I have many vague, unformed ideas, and there is no way I can explore all of them (let alone implement them all). I would like to make choices where I may be effective. And what is effective? I’m not sure how to define or determine that…but I assume effective choices will be the ones that create useful artifacts and efficiently use my skills and suit my personality. So here is what I know about my way of working and thinking.

I am an introvert and am most productive when working at my desk, doing intense work. I am not a socializer by nature. While I meet people and participate in events sometimes and enjoy such meetings, they also drain me. My choices need to exploit my ability to do concentrated work alone, and cannot depend on my “networking” or creating organizations or services or working in large teams. I am unambitious and don’t do well under pressure or targets. I can’t stay sane and productive in a competitive environment.

I want to remain focused on creation of content about dementia and care, suitable for persons in India. I am talking of content that can be directly understood and applied given our culture and context in India, and content that uses Indian metaphors, examples, language, etc. My experiment of creating material and the viewership tells me that this is a worthwhile target, with special mention of material created in Hindi, which has had over 30,000 views. Unfortunately, I don’t know of others who are convinced enough about this to actually actively create such content (usually, they refer people to a few well-known links from different countries without reading the articles/ manuals they are recommending). All this makes me feel I have even more reason to work in this area I consider important.

I believe technology is under-exploited for spreading information and providing support. I’m not an expert in technology, but I’m not afraid of it either, and I don’t hesitate when it comes to learning more about possibilities or implementation. I have picked up whatever technology I have need for my work so far, and am not scared by the thought that I may need to explore more technology options for some ideas I have. The potential of technology excites me and fascinates me, and is definitely something I’d consider while looking at options.

Productivity and effectiveness are major criteria for me. While I am willing to write and create material, I am a slow writer, and so I need to be careful about which writing projects to pick up. It would be silly to start something that requires several months unless I am sure I can do it, and that it is a better project compared to my other options. Making effective choices was not a major criteria in earlier days when I had no experience about such work, and not many ideas. But now I have many vague ideas and need to carefully select which to pursue.

I need to either locate a peer group or find some other way to brainstorm and evaluate ideas. So many things need to be done in the dementia domain that I cannot pick a random flavor-of-the-month are of work every month. Choices matter. Idea generation is not enough; I need good ways to perform idea evaluation and selection.

Over these past years, I’ve been in touch with many volunteers and wannabe volunteers who seem interested in dementia or caregivers or both. Usually, though, dementia is not their prime area and their approach is typically based on extroverted, networking-based solutions. They focus more on areas like “active ageing” and may even dilute or remove their overwhelmed-dementia caregiver focus over time. Some work in so many areas that I’m not even clear what their focus is. Understanding, measuring, or improving effectiveness is often not a concern. This means I do not have enough in common with them to discuss/ exchange ideas for my kind of involvement, as I focus only on dementia care.

Ideally, I’d like a reasonably-sized peer group of like-minded persons to remain motivated for my work and to discuss my ideas, joys and frustrations, but I have not yet found this group. I do have some friends with similar values, but they are scattered, not working in my focus area, and busy with their own initiatives and ideas. I can no longer assume I will manage to find an active peer group, and this lack affects my ability to process my ideas and act on them. It affects my pacing. I have no idea how to fulfill this gap.

I need enough time and energy for other (non-dementia) activities to get the emotional satisfaction I need When I first started blogging, I did that as catharsis, but as I increased my work and began actively helping others, I assumed I would get ongoing satisfaction and friendships. That’s not quite how things turned out. While I’ve had some interesting interactions and friendships with caregivers, our paths start diverging because I continue to work in dementia and others move on to their own areas of priority, leaving fewer areas of common interest. Interactions reduce over time. And while I am in touch with many concerned persons/ volunteers, again, most of them have very different interests and priorities and we don’t have enough depth of interaction for these to satisfy my need for intense friendships and emotional connection.

Dementia is not a cheerful area to work in. While some changes can improve the quality of life of the person with dementia and the family, there is an inherent downer in seeing someone fade out, stop responding, die. There is loss. There is grief. There is helplessness. Suggestions can make some difference, but the basic nature of the problem remains. People don’t contact me to share any good news; they contact when they are overwhelmed, stressed, unhappy. I find it frustrating to repeatedly see families face the same type of problem. I know how little the current support is, and how slow the rate of improvement in support systems and facilities is. While I feel some satisfaction when my suggestions and work are useful to others, this is overshadowed by my sense of helplessness and frustration. As this situation is unlikely to change, I need to spend time doing other (non-dementia) work or activities so make me feel connected and emotionally satisfied. I need to factor this in while seeing how much time I have available for dementia work.

Given my overall time/ energy availability, I have to choose whether to continue work to enhance my existing body of material, or whether to pick up some different type of content preparation. My impression right now (and this may change) is that my existing body of work can continue to help people so long as I do ongoing maintenance on it. It is reasonably complete as a unit of information for my target profile. (Some links to my existing body of work and recent viewership data are available here)Adding more material to it would be nice, but I believe I have reached the point of diminishing returns when it comes to investing time and effort in expanding my existing body of work. I am therefore interested in exploring whether I can work on a different, important area. However, I also need to remember that it takes me a lot of effort it to overcome self-doubt when venturing into any new area; any new venture/ project I consider should seem worth that emotional cost.

In my opinion, the most important aspect to address is dementia awareness, because awareness is pathetic in India, and awareness is the foundation on which everything else rests. I think we need ways to spread awareness about dementia amongst people who are not looking for information on dementia, and we need to reach out to multiple cross-sections of society. I am interested in seeing whether I can contribute to increasing dementia awareness. However, typical awareness campaigns include advertisements, walks, celebrity involvement, speeches, etc., and my personality does not match the skills needed for any of these. So my challenge is, can I contribute to spreading awareness given my personality and skill profile? Can I, as a self-funded solo worker, do something?

My current, tentative plan is letting myself freely think about potential areas of contribution rather than staying within some conventional framework. I’ve been using technology, specifically, the Internet, as a means for contributing for the last several years; developing material and making it available using the Internet also suits my personal work characteristics, and maybe, just maybe, I’ll find a way to extend this to work on some new area I consider important (such as dementia awareness). Maybe a few months down the line, I’ll have some idea on what to do.

And of course, if you have any suggestions that seem to fit my basic personality traits and my inclinations, please share them.

(This is the second part of a two-part blog entry: The first part can be read here: Working for the dementia care domain: my journey over the past six years or so (Part 1 of a two-part blog entry))

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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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Dementia and caregiving: More material in Hindi

Six years ago, I started sharing my caregiving experiences online as a form of catharsis, but this soon morphed into taking active steps to spread awareness about dementia and sharing suggestions/ information that could help dementia caregivers in India. The main reason I pushed myself to do what I could was the sheer paucity of material that Indian caregivers could relate to–material written assuming an Indian context.

Lack of material in Hindi was one of my concern areas. I tried involving others into creation of Hindi material, but no one stepped up to actually doing work (Alas, material doesn’t get created by clicking “like” on Facebook). I tried using paid translation services, but their translation was too literal and full of grammar and spelling mistakes and misleading phrases. So I began preparing material in Hindi myself–I created a full-fledged Hindi website on dementia and care, added a couple of Hindi videos to my youtube channel, and uploaded some Hindi stuff on my slideshare.net.

In the last few months, I put in another burst of work to prepare more material in Hindi. Here’s what I created:

A Hindi blog on dementia and care: While I’d initiated a Hindi blog a while ago, I had not been making posts in it. In May this year, I began posting more often on this blog, beginning with a topic I considered very important: Dementia names in Hindi डिमेंशिया को हिंदी में क्या कहते हैं. The blog now has 16 published posts, and I’m comfortable enough to now announce it here.

The blog is at डिमेंशिया (मनोभ्रंश) और सम्बंधित देखभाल.

A short, simple Hindi note on caregiving: This was the Hindi version of a simple caregiving note I’d written earlier. The Hindi note is uploaded on slideshare.net. You can view it at slideshare or in the player below.

Two Hindi videos on my personal experiences as a caregiver: One activity lying on my to-do list for a while was sharing my personal caregiving experiences in Hindi. I’d already created such videos in English. Talking about my personal caregiving experience is always difficult, and it took me a lot of rallying around to finally do the recording in Hindi. It was tough and draining. I finally selected out two segments of what I taped and uploaded it on my personal youtube channel at swapnawrites. (This is different from my other youtube channel, dementiacarenotes which contains videos with suggestions/ tips/ information for other caregivers, and is associated with my websites Dementia Care Notes/ Dementia Hindi).

Here’s the Hindi video where I share my mother’s dementia journey

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

Here’s the Hindi video where I share my personal experiences and observations as a dementia caregiver

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

So that’s what I’ve been doing to add my bit to Hindi material on dementia and caregiving. I am not fluent enough in other Indian languages to prepare material in them, and I hope others, fluent in various Indian languages, will consider sharing information and suggestions in them. I consider it a pity that most material in other Indian languages is material that was written for and by persons in countries other than India, because that material assumes a cultural context and level of support very different from what we face here, and hence not always practical for us here.

A request: If you are concerned about reaching audiences that read/ understand Hindi, please do check out the above. If you think they can be useful to others, please consider telling people about them, linking to them from your websites and blogs, and sharing them on social media. Thanks!

Links/ sites referred to in this post:

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Caring for someone with dementia

In November last year, a friend asked me to write a 700 word article on dementia caregiving for a souvenir. Though I’ve written extensively about dementia and related caregiving, the imposed word-limit forced me to weigh each sentence, each word. What should I include? What to exclude? While I didn’t manage to say all I wanted, I realized that a one-pager overview of a vast topic can be a relief after the rambling posts I typically make on this blog. So here’s the article, unchanged (I confess that I was sorely tempted to expand it, but I desisted 🙂 ). Note that the article was written assuming very poor dementia awareness, as the intended readers were based in India.


Caring for someone with dementia

by Swapna Kishore

Family members, friends, and colleagues often want to support persons with dementia, but are unsure how to proceed. Below is a brief overview of dementia caregiving.

The first step is to understand the difficulties dementia patients face.

Most people don’t appreciate how much dementia affects the patient because they think it is normal for elders to have reduced brain functionality and memory loss. They think dementia problems are similar to the way most elders misplace keys or get slower at calculations.

The fact is, because of the cognitive decline in dementia, patients find it difficult to do even normal, simple activities. Amma skips lunch because she doesn’t remember how to heat the meal her daughter left for her. Grandfather gets cheated of his lifetime savings because he no longer understands financial transactions. Papa gets lost because he can’t remember where he lives. Grandmother has no idea how to open the bathroom tap. But family members assume such behaviour is laziness or carelessness because they don’t realise these problems are caused by dementia. When Amma withdraws, they say she is ‘giving up’ and any frustration or agitation is considered meanness.

However, once people understand how dementia affects the patient, they can find ways to help the patients.

Realistic expectations are essential for effective caregiving.

Families often hope treatment will make patients recover completely from dementia, and do not understand the limitations of medicines. They also think that if patients try harder, they will become normal.

Such unrealistic expectations create problems.

For example, family members insist that patients should remember things correctly and work faster. They ‘correct’ mistakes, criticise, get angry, or show disappointment. This confuses and distresses patients who are facing genuine problems and already trying their best. They become slower or may get agitated, which, in turn, upsets family members even more. This unhappy circle ends only when families accept the dementia reality and adjust their care approach based on realistic expectations.

Caregivers can look for ways to improve patient safety and fulfilment.

Once caregivers appreciate the realities of dementia, they are able to find suitable caregiving approaches.

Consider problems of communicating with the patient. Dementia patients may forget where they are and not even recognise family members. They get distracted easily. If caregivers understand these problems, they’ll know that typical communication tips can help: face the patient while talking, use eye-to-eye contact, use simple words and short sentences, speak clearly and calmly, and avoid complicated questions. If names confuse patients, point out objects. These and other suggestions can vastly improve communication.

Or consider ways to change the home. Signs pointing to the bathroom can help confused patients. Patients may feel safer walking around if clutter and hanging wires are removed. Grab bars may help. Suitable home adaptations make it easier for patients to do their tasks.

Better dementia understanding can also explain sudden changes, like the patient becoming inactive one day. If caregivers know that patients often can’t explain when they are unwell, they may notice the patient’s fever or sprained ankle.

Basically, patient behaviour provides clues that can be used to find solutions.

For dementia patients, every day is full of difficult tasks, and a predictable daily routine reduces stress. But like everyone, they like fun and want to feel useful. Caregivers who add suitable games and simple chores to the patient’s daily routine often find that patients are more cheerful and willing to do things.

Care has to be person-centric

Though there are similarities across patients, dementia affects individuals differently in terms of type and severity of damage in the brain, and how this worsens over time. Care must be adjusted according to the patient’s changing abilities, personality, past history, health, likes and dislikes, skills, interests, family, social environment, etc.

Dementia care involves heavy responsibility and hard work. Also, it is heart-breaking to see someone decline. Caregivers get exhausted, make mistakes, and may feel guilty, resentful, or depressed. Yet they do experience joy, especially when focusing on what patients can still do. Those fulfilling moments give caregivers the energy to do the work and accept the inevitable decline.


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Dementia day care centres: criteria caregivers use to avail such facilities

I’ve often bemoaned the fact that we have very few dementia-specific facilities in India, but it’s probably time to write about the flip side of the problem: that some dementia day care centres remain underutilized and volunteers from such centres say they don’t understand why families hesitate to use day care facilities.

Before I continue, in case you are unsure what a dementia day care facility in India may be like, here are some interviews I did a couple of years ago (the information may be different for other centres and may have changed even for the centre these interviews refer to): Care in a dementia day care centre: a social worker explains and Taking dementia patients for outings: a volunteer shares his experience.

I’m writing this post to gather input from caregivers in India about their thoughts on using dementia day care centre facilities for the persons they are caring for. My questions: What criteria have you used/ could you use to decide whether or not to use a dementia day care centre? What are the pros and cons as you see them? How would you evaluate a centre, or its suitability for the person you look after? Would the location matter? Would transport matter? What sort of facilities do you expect in the facility? What sort of things there would make you so uncomfortable that you won’t think of using it? how would you decide whether the facility would suit the person with dementia? What sort of payment would seem reasonable to you? Are there other factors (like comments by family/ neighbors, etc.) that may affect your decision?

And, at a more basic level, do you think a dementia day care centre can add any value to you and/ or the person with dementia who you care for?

(Of course, if you have used a day care and have comments on what helped and what didn’t, that would be great to know, too)

I must admit here that I did not use a day care facility for my mother; my decision was based on my mother’s needs and personality and not so much related to the facility I evaluated. On the other hand, I know families that have been very happy using day care centres. I also know families that withdrew the person after a while, for various reasons. I’ll probably write more about these in a later post; right now, I would like to gather more information from other caregivers on their opinions and thoughts about day care facilities.

We need to share thoughts and data on this because we want dementia-specific facilities. If we want day care centres, but existing centres are not good enough, our data may help improve existing services or set up more suitable ones. And even if the services we want are different (like respite care or caregiver training or supply of trained attendants), we must remember that if entrepreneurs get discouraged by the response to their day care centre, they may decide against offering other services which we want.

Looking forward to your comments (Remember, you can post anonymously. You can also write directly to me).

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Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia

Last month, I had the opportunity to hear the renowned filmmaker, Jahnu Barua, talk about his film, Maine Gandhi Ko Nahin Mara, a Hindi movie where Anupam Kher plays the role of a person showing dementia symptoms. (Jahnu Barua Wikipedia profile and his website). This talk was on the occasion of ARDSICON 2013, the 18th National Conference of Alzheimer’s and Related Disorders Society of India (ARDSI), held in Guwahati in November 2013.

In an earlier blog post I had commented on this film and said that I found the film to be an excellent depiction of dementia and its impact on the family, but also expressed discomfort about the final scenes and their implication. I was, therefore, very curious to hear Jahnu Baruah’s talk on his approach to the topic.

Maine Gandhi Ko Nahin Mara is the story of a retired person (played by Anupam Kher) who starts behaving very strangely. He believes he has killed Gandhi and is currently imprisoned because of that crime, and shows a range of emotions like aggression, paranoia, withdrawal, wandering, while also failing to recognize family members. The distraught family consults a doctor and gets a diagnosis of dementia/ pseudodementia. The movie ends by showing a creative solution where Kher undergoes a trial in a rigged-up courtroom scenario to help him get rid of his obsession that he killed Gandhi, supposedly a major trigger for his situation. The solution is shown to work. This aspect (of such a solution being tried and its working so dramatically) had left me very uncomfortable, as I was unaware of any research or experimentation that supports possible efficacy of such solutions.

During his talk, Jahnu Baruah talked about how he got the idea for the film (he wrote the original screenplay and he directed the film). He shared some episodes where he unwittingly interacted with persons with dementia, including one who thought he was a murderer. Intrigued, he began learning about dementia and its impact on the person and family, and met many persons in this context. He did extensive research. As he then started thinking of a movie where the protagonist has dementia, and he decided to add a dramatic solution at the end. Some excerpts of what he said (yes, I took notes):

…I extended it with my wishful thinking that such cases have to be cured. Something, at least, to minimise the pain, and then I thought of creating something, a drama…

…whether it can happen, I don’t know, but it is only my wishful thinking and I always feel there should be a way.

Jahnu Barua also shared how, after the film, someone asked him, “Do you think it is possible?” (referring to the impact of the courtroom drama on the dementia symptoms). Jahnu Barua told us that he had answered: “I’m just a film maker, not a doctor, this is just my wishful thinking.” He had a positive feeling about the film he had made, and “whether it can be done or not, that is another aspect.” As I, too, had wondered about the movie’s end but hadn’t thought of trying to contact the movie’s director, I guess I was plain lucky to hear Jahnu Barua’s clarification, 🙂

In this context, I am reminded also of another excellent movie, Thanmathra (Malayalam, my detailed comments on it available here). This movie depicted early onset dementia, and is often quoted as a very instructive movie on dementia by doctors in Kerala. However, some doctors were unhappy at some aspects of the way dementia was depicted. The director, Blessy, responded to those comments in an interview, saying: This is not a documentary, so I am allowed to take certain liberties. (full interview here)

So true. We need to repeatedly remind ourselves that movies and stories are fiction, not documentaries. Movies are creative endeavours. They depict the world as envisaged by the script writers and directors, and explore “what if” scenarios.

Again and again I hear people say, we need more movies showing dementia, almost as if we can depend on movies to spread awareness. We forget that viewers of movies don’t know enough to distinguish factual aspects from creative extensions. Movies don’t come with detailed disclaimers and notes.

If we want to spread balanced awareness about various aspects of a condition, we cannot depend solely and undiscriminatingly on fiction. We don’t substitute physics and biology classes by sci-fi movies, do we? Movies may help spread information about some aspects, but not about all aspects. They may be incomplete, non-representative, or misleading if assumed to be gospel truth. To spread awareness of dementia, we need well-made documentaries, recordings of interviews, and documented case studies. We need easy-to-read validated informational booklets. We need celebrities sharing personal struggles. We can also have stories that are specifically designed just for spreading awareness, validated by professionals. And we may need a wide range of such stories because the dementia story is not a single story. Every patient, every family, every situation is different in some aspect, and a range is needed to give a completer picture.

Of course, people will still watch movies and assume that anything depicted in them is correct, even though the film makers do not claim their movie is a medically accurate depiction and very clearly state that they are using the media to express their creative needs. Watching a well-made movie is an emotional experience, and for the three hours we sit entranced, our world is the movie world, our reality the movie reality, and the intensity makes it difficult for us to later remember that part of what we saw is just a fictional extension, a creative exploration…

Because movies showing dementia may be seen as complete, correct, and representative depictions of dementia and care situations, I made an earlier blog post where I gave detailed comments on five Indian movies showing persons with dementia. I described areas where I found the movies reasonable in their depiction of dementia, and also where I felt the movies missed on some elements or could be misleading because of the drama/ fictional elements required by the plot. This post can be seen here (Indian movies depicting dementia: some comments) and includes detailed comments on the following five movies:

Another related post is: Poor awareness and the danger of very few representations.

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

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

The website:

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

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

The purpose:

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

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

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

Future Plans:

These are not ambitious, and consist of:

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

My Request to You:

Please spread the word about this site.

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

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

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

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

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

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

At the end:

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

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

If you see any mistakes, or if you have any suggestions, please, please let me know. The beauty of online work is that it can be changed, improved. Email me or use my contact form (both available at the contact page). I did this work alone, but now it is out there, and I am not alone. I welcome comments.

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

Thank you.

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Trained attendants and respite care for dementia: Observations from India

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

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

First, old age homes for dementia patients.

statistics for dementia facilities in India

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

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

A massive gap, indeed.

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

Read the full post here

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.

Read the full post here

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

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

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

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

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

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

Time to actually translate stuff, eh?

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

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

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

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

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Online caregiver communities: supporting each other

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

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

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

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

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

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

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

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

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

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

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

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Been working on dementia care site

I’ve not blogged for a while, mainly as I decided to put in a burst of work on my site, based on the surveys I did earlier. The March survey had shown trained attendants as a major concern area, and I tackled this first, gathering information from multiple sources. I was looking for areas of concern, which I collated across meetings with caregivers, questions asked in support groups, even an e-group that I co-facilitated, in addition to a survey I conducted for getting more input (as mentioned in my last blog entry).

One upshoot of all that energy is that the Dementia Care Notes website now includes a detailed page on what to expect from attendants in dementia home care, how to adjust to them, how to orient them, and supervise them, and ensure safety and security, etc. The page is here: Using Trained Attendants for Dementia Home Care The page also links to a document that can be used as a starting point while orienting an attendant for your patient’s needs. The document is downloadable at this link: Orienting attendants for dementia home care (PDF file).

I’ve also added other pages on some other important topics, like Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning and Long-Distance Caregiving for Dementia Patients in India

As I worked on these pages, I found myself coming up with a lot of ideas that merited blog entries. My experiences, my interactions with other caregivers, my realizations (during social gatherings and even medical trips) of how people outside my immediate circles seem as unaware of dementia now as they were three years ago. My comments on movies that depict dementia. Other stuff like that. I’ve jotted them down. I am hoping to make more frequent blog entries now, maybe even once a week, but I’m a bit wary of committing to that.

Time, now, for a break for a few days and then I hope to fall in a regular cycle of blogging…Let’s see…

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