Information and stories on dementia and care: Books from India

I’ve often lamented that we do not have enough discussion around dementia suitable in an Indian context. I’ve said that this it makes it difficult for families living with dementia to feel their experiences are part of the normal discourse of life. (Okay, so maybe I didn’t use those exact words, but sort of…)

Anyway, things are changing (albeit slowly). So around a couple of months ago I began collecting books written in an Indian context, published in India, and which are about dementia or at least prominently include it. I had some of these books already; I bought the rest.

Here’s the set I gathered and have commented on below.

For this post, I am considering these books only in terms of whether they could be useful/ interesting to persons in India who are concerned about dementia and related care. These could be persons in families living with dementia. Or they could be students, volunteers, professionals, etc., who want to know more and understand more about dementia and about care realities and the culture around dementia etc.

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Broadly, I categorize the books as under:

• Textbooks, medical explanations, and books suggesting care approaches for dementia
• Information on dementia and care in languages other than English
• Experience sharing by caregivers
• Ethnographic studies and other books on dementia and care status in India
• Other books, such as fiction, humor, etc.

Most of these books are available at stores like Amazon.in and Flipkart.com; search using the book name. For books that have to be ordered directly or are difficult to search for, I have included links to direct sites.

The comments below are, of course, just my personal opinion.

Textbooks, medical explanations, and books suggesting care approaches for dementia

Handbook of dementia (eds: Nilamadhab Kar, David Jolley, Baikunthanath Misra). This is a medical textbook (second edition: 2010). Its chapters have been written by experts in the dementia domain in India. The book, to quote, “aims to provide, within one volume, a user-friendly review of current knowledge and thinking on dementia, suitable for professionals and carers working for the persons affected by dementia.” It is expected to be useful to “physicians, psychiatrists, neurologists, geriatricians, general practitioners, nurses, occupational therapists, social workers, caregivers and family members of dementia patients.”

The book is an excellent reference text covering a whole range of topics around dementia-causing diseases, behavior changes, person-centric care, etc. It is a thick book (438 pages) but that is reasonable for its coverage. The book is a collection of chapters by different authors. While writing style varies across chapters, a lay person can definitely get a lot of benefit out of the book.

In my opinion, this book is extremely useful for volunteers, students, and professionals. It is also very useful for caregivers and has many chapters that are directly useful to them. For example, in addition to discussing dementia features and medication, the book covers a range of care topics like handling behaviors, occupational therapy, legal issues, caregiver well-being, etc. Also, the book can be used as an authoritative reference to show to persons who refuse to believe there is such a thing as dementia.

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Understanding Dementia: Disease, Treatment & Care (ed. Prof Shyamal Kumar Das). This relatively slim 2009 book has chapters by different authors. It gives the reader a useful overview of various types of dementia, the diagnosis process, changed behavior, etc. It covers dementia well, and explains the symptoms in ways that are easy to relate to. The text is very readable. It also has many relevant illustrations. Coverage on how to care is low, however, and will need supplementing with other material.

The book can be useful to students and to doctors from other specialties. Its friendly, explaining approach makes it suitable even for laypersons. It may be particularly helpful to families trying to understand the problems of dementia and the challenges the person may be facing. Its illustrations and simple language make it suitable as a authentic medical book that families can use to convince persons who refuse to believe the diagnosis. The book is available through the ARDSI Kolkata chapter.See their site.

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An Insight into Dementia Care in India (Leena Mary Emmaty) provides information on dementia and care in India. It is written by a social worker. Alas, the book I have is from 2009 and I have not seen a later edition. The book gives a useful overview of dementia and care. It is based on original research and gets dense at places. It often quotes terminology and studies that may not be relevant for caregivers looking for information and practical advice.

Students of social work, nursing, gerontology, psychology, etc. can consider this book as a reference. Caregivers may also find it worth checking out, especially because there are very few India-specific dementia books in print. Caregivers will have to extract useful concepts and tips from text that is sprinkled with technical terms and mentions of research papers.

The sections on resources in India are (naturally) quite outdated.

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Information on dementia and care in languages other than English

A Gujarati book for dementia and care is available from Flipkart, titled “Chitadu Chorayu – Dementia Ni Duniya ચિત્તડું ચોરાયું ( ડિમેન્શીયાની દુનિયા) (Daksha Bhat)“. It briefly covers dementia and its symptoms and types, diagnosis, medication overview, impact of dementia, caregiving, caregiver stress, daily routine, challenges, etc., and has some explanatory figures. (disclosure: the book includes a link to my site in its references).

This is a small book with a modestly priced paperback that can help Gujarati-reading families get introduced and aligned to dementia and care. The book is available on Flipkart and also from this page.

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A Bengali book is available from ARDSI Kolkata, “Dementia Paricharyya ডিমেনশিয়ায় পরিচর্যা (Ed. Nilanjana Maulik)“. This book is for caregivers supporting their loved ones with dementia in a day to day situation. It highlights the strategies caregivers can use for their routine tasks. Topics covered include description of dementia, Alzheimer’s Disease, comparison of dementia with aging, how to interact with someone who has dementia, explanations and tips for several topics like communication, bathing and cleaning, various daily activities, healthy living, and also problems like depression, hallucinations and delusions. The book coverage is useful and impressive. Unfortunately, the book does not have any pictures or illustrations.

This is a a slender, modestly priced volume, and could be very useful for Bengali readers who want to learn about dementia, its impact, and care. It is available from ARDSI Kolkata. See their site.

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Experience sharing by caregivers (offers some perspectives of how families experience dementia,through these real-life stories)

I found three books in this category, all containing accounts of personal experience of care. All of them also include some philosophizing and analysis, a natural mechanism caregivers use to cope with the drastic dementia changes. All three books provide interesting insights into what families may experience. Keep in mind, though, that each family experiences dementia in its own unique way. They interpret and analyze the situation differently, too. So when reading such caregiver-sharing books, readers have to remember that their experience and their perspective may turn out to be quite different.

In the line of Alzheimer’s: The Mission Continues (Brig (Retd.) S P Bhattacharjya): This is the first person account by Brig Bhattacharjya, who at the age of 84 was still looking after his wife Sukla who was then 72 years old. The narrative is remarkably detailed and covers many incidents from the pre-diagnosis stage. The book covers around fifteen years of Sukla’s decline, sharing incidents, mistakes, things that worked and that did not. These include symptoms which the family missed then and only later realized may have been because of initial dementia. While sharing the anecdotes, Brig Bhattacharjya places them in the context in which they happened, shares them with honesty, and also often includes his own analysis. The book is detailed but flows smoothly and is an easy read.

Professionals and volunteers will find this book very useful to understand realities that families face. Caregivers can obtain an idea of the type of problems some families face at various stages of dementia, and the types of mistakes made. The book is published by ARDSI Kolkata. See their site.

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Krishna: Living with Alzheimer’s (Ranabir Samaddar): This is the first person account written by a social scientist who was the caregiver for his wife who had Alzheimer’s Disease. The book includes the narration of the last stages of his wife and his account of his grappling with the medical systems is honest, detailed, and insightful. The book is peppered with well-researched data and rich analysis. About the final stages, he says (pg 133): “It is a complex process by which death comes to countless Alzheimer’s patients through the remorseless operation of the means and modes by which medical business runs, the profession works, and medical knowledge prevails.” And, on pg 134: “You realize only gradually that the system is the silent killer of Alzheimer’s patients. Doctors know little about patient care, can advise even less on this, and are not willing to learn from caregivers because they think that medicine is a matter of specialized knowledge.”

The book has several chapters detailed his experiences. The late-stage care chapters, especially, are extremely valuable in our Indian context where late-stage dementia is handled at home and often requires multiple interactions with health care professionals and hospitals. I have heard of similar experiences from many families, but tired, bereaved, frustrated caregivers rarely talk about them openly, and almost never to the media, so this important problem remains under wraps. Volunteers and professionals who are concerned about supporting dementia families may not even be aware of these. The book also contains several chapters about the earlier years of dementia, both the personal side and the social side. Perspectives about “quality of life” have been discussed in a very interesting way. The book is heavy reading in parts, especially when medical data is discussed. But caregivers looking after persons in earlier stages can skip the late-stage dementia part in their first read and return to these parts later.

This book is a must for professionals and volunteers who need to understand problems that families face in the health care system. These are the persons who can help change the system. The book is also important for caregivers, who can get a perspective of how dementia impacts persons, and also a cautionary tale about dealing with medical aspects. Of course, not every family faces the same situation, whether on the personal front, social front, or medical support front–but this book can help people think about situations and how they may handle them if they arise.

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A World Within: a remarkable story of coping with a parent’s dementia (Minakshi Chaudhry) This is written by a daughter, and describes her father’s decline. The book is full of well-narrated, touching anecdotes that show various sides of the father–in some he remembers and talks about the past, in some he shows mild confusion, in some where he deteriorates further. The incidents are told with honesty and loving detail and touch the heart. The writing style is intensely personal, and anecdotes are enriched with personal musings, regrets, and insight. The love shines through alongside the glimpses of the growing problems.

Again, a worthwhile read for everyone who wants to know what a family living with dementia may experience. Of course, every family has its own journey through dementia, but this is a valuable insight into one such Indian family.

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Ethnographic studies of dementia and care in India (mainly for serious students with time and patience or others with a somewhat academic bent of mind)

These are books that discuss how dementia has been handled through the ages in India, what the status of support in India is, and how families cope with dementia even today. I found two books in this group.

No Aging in India: Alzheimer’s, the Bad Family, and Other Modern Things (Lawrence Cohen) is a book whose paperback was first published in 1999 and with a copyright of 1998 with the University of California.

As such this book did not fit my self-imposed search criteria of looking for books published in India that may be of use of caregivers. But it is one of the best books I have read. It is a book that anyone serious about the ethnography of dementia would love to read. The book is an interesting cultural analysis of aging in India. It is also very dense and a heavy read. Lawrence Cohen is a medical anthropologist who is concerned about how people “comprehend the body and its behavior in time” and the book is a detailed account of his observations and study. A must for someone serious about understanding dementia in India through the ages–anthropology or ethnography students, for example–but be warned, this is a book that needs patience, time and attention. It is not aimed at caregivers.

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Unforgotten: Love and the Culture of Dementia Care in India (Bianca Brijnath) is another ethnographic study, this time of middle-class families in urban India. It describes how these families care for persons with dementia. Set in 2014, and focused on the urban middle-class, the book may be easier to relate to by many caregivers who read this blog. It is dense, though, and full of references. Readers need to be attentive.

The book is probably best for students and researchers. Do not expect a swift or breezy read; be ready for a meandering, rich read instead. Again, a must for someone serious about understanding dementia in India. If you are a caregiver, well, this book gives several insightful and interesting caregiver stories, but it can be a heavy read.

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Other books, such as fiction, humor, etc.

These are some books that integrate dementia into fiction plots, essays, etc. Some felt authentic, some misleading, and some disrespectful.

Our Nana was a Nutcase (Ranjit Lal): This is, I think, intended to be a children’s book but I enjoyed it. In spite of its apparently odd title, the book is a delightful, sensitive, and extremely love-filled portrayal of an eccentric grandfather who starts showing symptoms of dementia. Excellent writing. It offers an impressive portrayal of early changes in dementia and how the family realizes something is awry. How the grandkids and others puzzle a bit, and then not just accept him but work hard to make sure he stays at home with them, loved as always. All the characters are portrayed well enough to seem real. For example, the grandfather is vivid as a person, and the grandchildren are fun-loving and affectionate, sometimes mischievous, sometimes disobedient, sometimes considerate.

This book is a great example of fiction that seamlessly includes persons with dementia and has characterizations that are entertaining and informative, yet without any preachiness at all. All through the book, the grandfather is a person and never reduced to being merely a patient. He is someone who is loved and very much remains part of everyone’s life.

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Some other books I checked out are listed below. While they are all related to dementia in some way, I do not find their coverage of dementia suitable for informed awareness and improved sensitizing.

Sleeping with Jupiter (Anuradha Roy): This is literary fiction, full of complex nuances. It has an overall theme of loss and searching for the past. The book does this through the stories and experiences of many characters. One such character is an elderly lady with increasing disorientation and forgetfulness. While it portraying the lady’s experience nicely, her behavior is not seen as a possible medical problem by others around her. The symptoms are not noticed as being different enough from aging. Dementia is not mentioned at all, though some reviewers have assumed it (that is how I was given the book’s reference). It is unclear whether the author was depicting her perspective of varying ways people age, or whether she wanted to depict early dementia. The book is good as literary fiction, but it is not a story that can be used to understand or develop sensitivity towards dementia.

Silver Haze (Pankaj Varma). This is related using the first-person voice of the person with dementia–the mother. The author has modeled the story based on his mother, who had dementia. He tries to imagine what she may be thinking and also describes what he thinks her past was like. The bulk of the book, in fact, is supposed to be what the mother (fictional mother) wrote after knowing about her diagnosis. This narration is smooth and rich with detail, and even includes self-awareness about her dementia. The impression the book gives is that this lady with dementia is very coherent and has excellent recall. It is as if her dementia does not affect her ability to write a complete, coherent, detailed life story (the sort of activity that would typically take months or years).

While I am not saying that this can never happen, this would be very unusual. Such a problem-free long-term project of self-expression seems unlikely for someone with dementia. It does not seem consistent with most descriptions written by persons who have dementia (their blogs, books, videos). Also, I and the caregivers have all seen our loved ones with dementia struggle with words and concepts, have huge gaps in memories, and make many mistakes in recall. So this book’s narrative voice didn’t work for me. More important, it could make readers think this is typical. They may therefore underestimate the problems and cognitive decline that persons with dementia face, and have unrealistic expectations or put undue pressure on the persons. Read this book as fiction if you want; if you want to know the experiences of persons with dementia, read their blogs and books and see their videos.

Delights of Dementia and other essays (Dr. G Lakshmipathi). This has a set of allegedly humorous essays on many medical conditions, including dementia (the essay that lends the book its title). I found the book’s humor unsuitable for stressed caregivers and even others. The book’s language around dementia is stigmatizing. Descriptions (fictionalized) of confusions and delusions caused by dementia are described as if they are a source of entertainment that a doctor can use for some sort of comic relief. I am extremely uncomfortable with the thought that someone with dementia or someone supporting them may read this book; they may feel mocked or isolated or may hesitate to contact doctors if they think all doctors think like this. My detailed book review is on amazon.in (a one-star review).

Some other posts on how dementia is covered in stories, movies, media, etc., and also some links to dementia care story sharing in India:

• Indian movies depicting dementia: some comments has detailed comments on:
  • U, Me aur Hum (Hindi, DVD available, starring Kajol)
  • Black (Hindi, DVD available, starring Amitabh Bachhan)
  • Thanmathra (Malayalam, DVD with English subtitles available, alternate spelling Thanmatra, starring Mohan Lal)
  • Maine Gandhi Ko Nahin Mara (Hindi, DVD available, starring Anupam Kher)
  • Mai (Hindi, can be viewed on erosnow.com, starring Asha Bhosle)
• Some follow-up comments on movies etc., at: Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia
• Several caregiver stories, interviews, newspaper coverage, etc., all India-based, at: Caregiver interviews and voices

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Using Online Caregiver Forums: Some Observations and Thoughts

Caregivers need support groups but often find it difficult to get away from their responsibilities and attend an in-person group. Their available free time may be too small a slot, or may not match the time of a scheduled support meeting. The more overwhelmed and stressed the caregiver is, the less likely it is that this caregiver can reach an in-person group.

This situation is really sad because support groups reduce caregiver isolation and provide a safe forum to exchange stories, problems, and suggestions with each other. Attending even a few meetings can transform how caregivers perceive their situation; they start finding the challenges more bearable, the changed behavior is taken less personally, and they are able to use suggestions they get from others and even generate creative solutions themselves.

Given the practical problems related to attending in-person groups, we need to examine the use of online forums for caregiver sharing and support. I am using this blog post to share my observations and thoughts, and give my suggestions, based on a number of online support groups that I have been part of–some as an active participant, and some as a lurker.

There are many types of online caregiver forums. At one end of the range, there are large forums that have structure and moderation and are handled by a group of committed persons/ some volunteer organization, and continue for years. And then we have small, informal groups that some caregivers form to stay connected and support each other, with membership varying from five or six to around fifteen or so.

Let me first share my observations and thoughts about smaller, informal caregiver groups. If you have been part of such groups, I’d love to hear from you about your experiences and impressions…

In the last five years, I have seen many instances of caregivers creating their own online groups. Some groups emerged after caregivers met during some face-to-face support group meeting or caregiver training and decided to stay in touch online. Others emerged when caregivers happened to meet online and decided they needed to get together for mutual support, and therefore gathered a group by bringing in friends (and friends of friends) or using social media. These groups were relatively informal with no active moderation. While some members were volunteers or professionals were included, they were not present in the capacity of a moderator or administrator or even an expert, just present as members.

Firstly, the groups were typically very fast to set up. Some caregiver would tell another, let’s set up something to stay in touch, and then a few of them decided on a technological platform they all were comfortable with and plunged in right away. I’ve seen email groups and Facebook groups (but not bulletin boards) getting kicked off and working full steam within days of someone suggesting starting a group.

The initial momentum was heartening. Caregivers were clearly eager to get and give support and they openly shared their situations and problems, and were generous to each other while empathizing and sharing suggestions. Conversations were meaningful and it was clear that a rapport was building. Of course, the usefulness of the group depended on the members’ availability, involvement, knowledge, and degree of articulation, but definitely most members found the groups helpful.

However, the tempo faded after a while. Participation died down even though no one specifically unsubscribed. Some queries got no responses or just perfunctory responses. Queries stopped after a while. Some subsets formed when two or three caregivers began corresponding directly/ established phone contact, but the online forum was no longer active.

One typical characteristic of these small informal groups was the lack of detailed rules and active moderation. This initially added to the sense of friends getting together, an informal air, and worked in some groups, but not in others.

There were problems, too. Everyone was not happy with the group; some even got stressed by it.

Here’s one example. One caregiver (I’ll call her AAA) was handling an aggressive parent with dementia alone, day and night, and did not have an attendant to help. Siblings had moved away and would not call. None of the other caregivers were facing such a severe challenge; they had at least some family or helper support, and not all were actually handling the daily care tasks. When AAA would post her problems and others responded, she was very unhappy with the responses because she found the responses obviously impractical given her situation (take a break, get help from your sibling) or she felt dismissed because someone would tell her to lighten up (don’t take yourself so seriously, have a good laugh instead, you’ll find it funny when you look back at it later).

After a few such responses, AAA wrote directly to me to say that the group stressed her because she had expected at least fellow caregivers to understand her problems, but now she felt even more isolated. She felt the group was not a safe space for her to unburden herself or seek help. She stopped participating there, and she and I continued our interactions on a one-to-one basis using email and phone. It was ironic and unfortunate that a support group increased her isolation.

I think one problem is the way we respond to online interactions. An in-person support group meeting is an immersive experience; caregivers see facial expressions and hear the emotion in the voices when problems are shared. Even if someone’s situation seems very different from their own, the face-to-face interaction makes it easier to pay attention and feel empathy. Selecting an appropriate response is easier, and it is easier to see when to avoid humor or realize what could sound preachy or trite or judgmental. Suggestions and comments are therefore better worded, longer, and supplemented by gestures and facial expressions that reaffirm the spirit of support.

On the contrary, in an online forum, people may not read posts/ mails carefully, or may type a hasty reply without grasping some key facts from the original post, or may sound harsher than they intended to. Or, even if they write well enough, the person reading it may be oversensitive about some phrase or suggestion, and feel hurt.

My impression, based on my (limited) experience, is that small, informal online groups function better if the members have met each other or talked to each other before interacting through the forum, because even a few earlier interactions or in-person meetings make them more willing to share experiences and create trust. They are also less likely to take offense or interpret responses as put-me-downs.

The problem AAA faced is only partly because of the characteristics inherent in the online mode of interacting. There are other factors, too. We use the word “caregiver” as if all caregivers were the same, but there is a vast diversity in caregiver situations. A small, informal online group of diverse caregivers does not include enough members who can understand and support each other for every type of care situation.

Another thing that made me uncomfortable in some of these groups was when members posted specific suggestions and advice on medication and alternate treatments. These alternate approaches were projected as medically sound, but were recommendations that I knew were scientifically suspect. Data posted to counter the claims was seen as obstructing “helpful” advice. I felt that this was the sort of situation that would typically warrant intervention by a knowledgeable moderator, but the group was not structured for moderation.

None of the groups inducted new members except for a token few in the beginning. Meanwhile, existing caregivers “moved on.” Caregivers don’t need help from the group once the person stabilizes and they get the knack for handling the situation. Or if the person reaches a different state for which the existing support group is irrelevant. Or the person dies, and the caregiver has to resume a career or rebuild a life. My impression was that existing members were not keen on new members because that would be adding an unknown factor in a group that had some sort of rapport.

Let me now share some observations based on a much larger, structured group with formal rules and guidelines on what sort of posts and language are allowed, and with moderators overseeing group functioning. Members include several caregivers coping with diverse care situations.

As in the smaller groups, I saw the participation of individual caregivers change a lot over time. Some rarely posted; others posted actively for some time but then reduced participation or even stopped it; some were sporadic in participation. However, as the number of caregivers was very large, and as new caregivers kept joining, the interactions remained vibrant and helpful. No query remains unanswered. The moderators, too, actively participated and keep the flow of exchanges going.

No group can be free of misunderstanding, and I did see occasional posts that seemed judgmental or harsh but usually some other member or moderator responded almost immediately to express enough empathy with the original poster and related query, thus diffusing any possibility of hurt. Inconsiderate comments were not tolerated. Spam messages or misleading promotion of dubious cures were similarly handled by moderators and other group members.

As I write mainly out of concern for caregivers in India, I must note one problem: the membership in the larger caregiver forums is usually from outside India, and many of the queries and comments assume a very different culture and very different types of system and support. Discussions on end-of-life care, legal and financial issues, use of services, availability and regulation of helpers, all are based on a very different set up. That means many suggestions can be used only partially.

So what can I suggest caregivers in India who are looking for online support?

Firstly, online support groups as such are definitely worth considering. Online groups provide 24×7 availability of a forum to post. The sense of community helps. You may get empathetic responses and feel less isolated, and you may get some useful responses.

If you already know some other caregivers with whom you share some trust/ rapport, getting together and creating an informal online group is worth considering. Of course, expectations need to be limited, and such groups may not suit caregivers whose situation is very unusual and different from that of all the existing members. And members need to understand that such groups cannot be depended on for medical advice.

Also, please do look at existing dementia forums/ caregiver forums run by volunteers/ organizations/ groups of concerned persons. They will reduce your sense of isolation and give you some idea of the problems and solutions others use. Even when the exchanges in such forums don’t always suit your context, they could contain useful pointers. Also, look for online support groups set up for special situations, such as for specific types of dementia (Lewy Body, FTD).

A good approach is to join multiple groups, and understand which type of need each of them can meet. Use these groups depending on the fit, participating according to where you feel comfortable sharing your problems and also sharing your suggestions for the problems others face.

Here are a few things to keep in mind before participating in an online group.

Groups have different degrees of privacy, and even if a group is supposed to be private and if posts are kept private and confidential as per the technical platform used, ultimately the actual implementation depends on the other members, too. If you are posting something very personal, and are very particular that no one should be able to link your posts to you, consider groups where you can use a pseudonym and do not share details that could identify you.

Some groups (such as groups on Facebook) may be confidential, but you need to enroll with your real name. Members can click through your name from a post you made in the group and see your public profile. Keep that in mind if that seems to be a problem to you.

Also, in very large groups, keep in mind that your family members and friends (or their friends) may also join. Keep that in mind when posting details or rants.

Well, those are my thoughts and observations related to caregivers considering online support groups, and I would love to hear from you about what your own experiences have been on the effectiveness and usefulness of such groups, or your suggestions to caregivers on this.

If you are a concerned person trying to help persons living with dementia, you may be considering setting up an in-person group or an online group. I have created two draft documents that put together my thoughts on what setting up and running online groups and in-person groups involve. Both these documents are available online and also for download, and you can refer to them. I would appreciate any comments you have, so that I can refine the drafts and release improved versions. The page where you can view the documents or download them is here: Create dementia care support groups (includes download). The two individual documents are available for download at Setting up and maintaining an online caregiver forum to support dementia caregivers (PDF file) and In-person Dementia Support Group Meeting Guidance Document (PDF file).

I really would like to hear from you, either as comments below or as an email (check my contact page to know my email id).

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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):

• Online English material(all figures rounded off):
  • Blog (swapnawrites.wordpress.com): Contains personal experiences. Has 240 blog entries + pages. Views so far: 57,000
  • Dementia Care Notes website (English): Has 115 entries . Page views so far: 380,000
  • English videos on Youtube (Two channels: my personal interviews and videos with information and suggestions for caregivers ): Videos uploaded: 7 Views so far: 37,000
  • English presentations/ documents on Slideshare : 14 uploads, 17,000 views
• Online Hindi material(all figures rounded off):
  • Dementia Hindi website : Has 47 entries. Page views so far: 25,000
  • Hindi videos on Youtube (Two channels: my personal interviews and videos with information and suggestions for caregivers ):Hindi videos uploaded: 6 Views so far: 3700
  • Hindi presentations/ documents on Slideshare : 5 uploads, 2800 views
  • Hindi blog ( a very recent addition) : Has 17 posts and 550 views

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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Adventures in Hindi Part 4: In the end is the beginning, or, more observations, a summing up and a way forward.

The temptation to seek elusive patterns by examining random snippets is rather high, but I have this self-imposed criterion that I cannot “play around” under the garb of “investigation” for more than a week–I must do something tangible before I get the next “quota” to play. It may sometimes be a blog post, sometimes page on my website, or a video. For someone who has been working from home as one’s own boss (and office boy) for years, such a rule is necessary for sanity…

So, having made three meandering posts, I am determined today to wrap up my ideas and learning in this fourth and last post of the series.

(For those who don’t like the upside down reading that serial blogs entail, the earlier parts are as follows: Adventures in Hindi Part 1: A mother-tongue fading behind a veil, Adventures in Hindi Part 2: The failed experiment of Have-English-can-translate-to-Hindi, Adventures in Hindi Part 3: India Shining, Internet, and the entertainment override)

I embarked on this adventure prompted by the lack of Hindi material on dementia. It is now my impression that other than the most desperate, no one expects helpful material to be available online, and no one other than the desperate look for it. And even the desperate may not check on the Internet because they don’t know Hindi material can be found there, or are clueless about how to find it.

And this impression could really let me off the hook– no one is expecting it or looking for it, hey, there’s no problem! No demand, so no need to supply, that’s cool 🙂

But here is another way to think of it: If there were material in a format attractive to Hindi speakers/ readers, and if such material was visible to an audience grappling with problems related to dementia care in their family, such material would help. The audience I refer to is persons who speak Hindi and consider it a language they know and are comfortable with, and who are not as comfortable with English. Such an audience will also be unfamiliar with concepts discussed in English but not usually discussed in Hindi.

Which means, the wriggle-out space to avoid work on Hindi reduces.

(And as before, what I write of Hindi would probably apply to Kannada or Gujarati or Tamil or any other Indian language)

There is some Hindi material related to dementia already present on the web. Many are news articles thanks, in part, to Suresh Kalmadi, single-page news items or some comments/ blogs on them (sarcastic ones). The news items that I’ve chanced upon do not explain dementia (other than calling it a memory problem), nor do they explain the relationship between dementia and Alzheimer’s. Some experts are quoted, often using out-of-context snippets and distorted statements. Dementia symptoms are not identified, and there’s contradictory stuff on whether dementia can be prevented or not, treated or not, cured or not.

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 (archived version) , 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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Where dementia caregivers in India need help

Because time and energy are limited, because there is so much that can be done, because I need to prioritize (or risk going crazy), I decided to use a simple, single question survey to gather data from dementia caregivers in India/ people involved with them. I put up the survey in the second week of February.

I am grateful to every caregiver/ friend of care giver who took time to share their thoughts or forward the link/ e-mail to someone else who may have been interested.

In this post I am analysing the first batch of responses received: the 17 responses I received up to March 14, 2011.

First, about the questionnaire (given below). My simple, single question survey collected no personal data, but also did not allow a person to respond twice. Respondents could choose as many options as they wanted. I expected them to tick any options they considered helpful, and if someone ticked all options, it would be because that person genuinely felt all the choices offered were helpful.

The analysis below is of the 17 responses received up to March 14, 2011. These responses had trickled one at a time, and apparently came from a scattered profile of individuals who had somehow heard of the survey. I started this analysis when responses tapered down. Then, after doing this analysis, when I checked to see whether a couple more responses had trickled in, I was surprised to see that there had been a spurt of responses on March 15 and 16. I’m doing this post to capture the insights so far, and if any additional responses I get later provide any additional insight, I will add another post later.  

So far, for this first batch of 17 responses, the counts fell in two clear categories.

Most respondents chose the following options:

• Availability of trained attendant (14)
• Training programs for caregiving skills (12)
• Home nursing services (12)

And fewer chose these other three options:

• Support group meetings (6)
• Caregiving books/ videos (6)
• Day care/ respite care (7)

In the “others”, I received the following three comments:

• And more information available in public which helps you understand that dementia is an illness not something that you need to hide away!
• Professionally Trained Nurses who do not take the other inmates of the house for a ride.
• knowledge of potential volunteers for caregiving

So, folks, that is the raw data: interpret it as you will. Below is my impression.

HBO’s Alzheimer’s Project

I’ve been busy, not enough time to write a detailed post on a few topics I want to, but then I saw this set of video streams, and it was worth writing about: HBO’s Alzheimer Project.

If you want to see what dementia means to the patient, and to  caregivers, this is an absolute must. The project includes a set of videos (which will be available for sale later), and guides that go along, and supplementary material. There is also a lot of data that makes the impact really sink in. Did you know, for example, that 54% of the people in America have been touched by Alzheimer’s, as patients, relatives, friends, whatever.  The national impact of Alzheimer’s (for USA) is discussed.

One of the dementia patients interviewed has been using a blog to record his thoughts as he progresses through the disease (see: Joe Potocny’s blog ). He also twitters.

It was while going through these video streams and other material that I realized how different it is in India, where diagnosis usually happens (if at all) in middle to late stages.

I, for one, have not met a patient diagnosed at a very early stage, who understands he/ she has dementia but is still almost fully alert/ functional, and is therefore planning for and dreading the future. I have not seen a family where the patient explains to his/ her grandchildren what will happen to him/ her because of the disease in a few years. I do not know patients who have grasped the impact of the disease in time to say their farewells the way they may want to.

If ever I get dementia, I would like to know in time to enter the state with grace and after having said my farewells and given my hugs to all I care for, after neatly setting aside my life as memory forces me to.  Even if the disease is non-treatable, surely there can be dignity in the way one embarks on this downward slide, dignity while it lasts.

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