Dementia Awareness in India: What level is it at?

Many people working for dementia are sure that awareness is much better now — but they only have anecdotal data and personal impressions to support it. My own impression about dementia awareness in India is less optimistic. I think awareness has improved in pockets, and stayed the same or got worse in others. I also think that a lot of misinformation is spreading along with information, and that the negative impact of misinformation could partially offset the positive impact of good information.

This post presents my initial thoughts on how we can understand where our society stands in terms of awareness of dementia.

For a while now I’ve been asking around for are surveys or studies to gauge awareness levels in India. I have not found any recent studies that measure awareness. I have also been told that surveys cost money and resources. (One study I found was way back in 2009, the link of which is at the end of this post).

India is a country of diversities. There are rural areas that are difficult to access, there are urban slums, and there are luxurious apartment complexes in metros. There are the highly educated, the functionally literate, and the illiterates. India has many languages, and though many Indians know more than one language, many are not literate or fluent in more than one. There are abjectly poor persons living with extremely poor infrastructure, and there are advantaged persons who don’t even know that many families struggle for basic sanitation and clean drinking water.

How can any study, any research, get at least enough data from all these segments to obtain a sense of what is going on? Here are some initial thoughts I have.

Firstly, awareness is not important in itself. It is not an isolated goal. Awareness is important because it affects coping and behavior when a problem is faced. When there is zero awareness, persons facing the problem do nothing about it. When a society is fully aware about a problem, the solutions are so clear and available that we don’t have to bother about awareness at all–awareness is all-pervading.

Our concerns and actions to improve awareness and outcomes are because we are in between these two extremes.

Everyone working in the dementia domain agrees that awareness is very important. But people differ in how they perceive the current status, the direct efforts being made to improve awareness, and how effective they feel they are in helping families cope with dementia.

We need a realistic idea of the current levels and the progress in the level of awareness, because:

  • Awareness data helps volunteers know the effect of their work. It helps them to channel their efforts better to achieve what they want.
  • Awareness data provides a better basis for attracting volunteers and funds.
  • Awareness data can be combined with data on diagnosis and family experiences to get better insights on how to get more early diagnosis, and to make life better for families living with dementia

Surveys on awareness require a lot of resources and are time-consuming and therefore cannot be conducted very frequently. However, in between exhaustive surveys, other indicators may be used to assess the trends in awareness levels more regularly. Broadly, I propose that analysts consider the following:

  • Information-seeking behavior of families facing problems. As awareness increases, information-seeking from reliable sources should increase. Trends in information-seeking behavior are one indication of trends in awareness.
  • Available information, its quantity, quality, and reach in relation to various segments of society. Awareness in any society cannot exist without information being available. Hence, the trends in information availability can point to the trends in awareness.

Below I explore these in some more detail.

Information-Seeking Behavior

When someone shows dementia symptoms, the person and the family may respond in different ways.

  • The symptoms are ignored (old age), or feared to be stigmatizing and hidden
  • The symptoms are not seen as “dementia” and information is sought from sources that are unreliable
  • Information is sought from sources where these is chance of getting reliable help, like doctors, helplines, organizations related to dementia, searching books and the Internet, memory clinics, etc.

Data on some information-seeking behavior is free and publicly available (such as google trends, Wikipedia page reads) or is available as statistics issued by some organizations (like helpline usage, memory clinic visit records, website usage statistics of larger websites). This data can be studied for trends and also correlated to demographic factors.

For example, an analyst can see if a website’s visitors come more from one geographic region or another, or how they grow. Or they can see if the Google searches for a certain phrase have been going up over time. Or if a helpline is getting more calls now than earlier.

Availability of Information

Awareness cannot increase without correct information being available in multiple forms. If awareness has to be increased in a segment of society, persons in that segment need to have access to correct information in formats that they can understand and use. Even if information is available, persons may not think of hearing/ watching/ reading it, and information may have to be “pushed” on them in order to make them realize it is useful.

There are many possible forms of information. For example, printed information–articles in newspapers and magazines, books and comics, pamphlets, flyers. Information broadcasted over radio and TV ads and programs. Entertainment, such as movies, street plays. Programs conducted for information, like awareness talks at community centres, walks, etc. And online sources like websites, apps, forums.

There are also many other resources that can be approached, like doctors, helplines, memory clinics.

We can view pieces of information using various criteria, such as:

  • Is the information in a format that the target audience can understand? What does it assume in terms of literacy, language and comprehension skills, accessibility, etc.?
  • Is the information reliable and useful?
  • Is it just a teaser, or is it practical and usable? Is it clear or can it be misleading?
  • Is the information presented in a way that the target audience will be exposed to it naturally (like radio or TV ads and programs, movies, street plays)? Or is it only visible to those actively seeking it (like buying books or approaching a doctor)? How much effort does someone need to put in to get the information?
  • How visible and persistent is the information?
  • Is the information free or does it cost something (like a paid workshop)? Is it affordable, and cost-effective?
  • Does the information reinforce stigmatizing depictions of dementia? Does it contain confusing or wrong information on symptoms, progression, treatment, etc.? (If so, the effect is negative)

Such criteria can help us gauge the usefulness (or harm) of pieces of information in terms of impact on awareness.

Take, for example, a printed English newspaper article. A printed article may be visible for only one day (when the paper is new), is of use only if seen by an English-reader who spots it, reads it, and understands it. The percolation of information through such an information piece is different from that of a TV ad played between a popular program or a radio ad aired between news programs or songs. Or consider a memory clinic; though this is a good source of authentic information it is used only by persons who know they should go there and who have the time and resources to visit it.

We can combine the estimated usefulness of pieces of information (a quality measure) with the quantity of information available (and how it is growing). This will give us a sense of how these facilitate improved awareness.

Fortunately, a lot of data is available free online, such as detailed demographic data, available articles, readership and viewership trends, income and spending patterns, projections for these, and so on. Some armchair analysis using public data, models, and maybe small surveys, can therefore provide insight about dementia awareness level and trends. This could supplement larger studies, but even otherwise, it would help us understand ground realities and gaps better. Volunteers can then decide where to focus efforts.

I may explore this in future posts. Meanwhile, I would love to hear your thoughts on this post. Please do share with others who may be interested.

Referred to above: The only paper I have found so far, a much-quoted paper by Dr. Amit Dias et al on treatment gap, based on surveys in Goa and published in 2009: Closing the treatment gap for dementia in India

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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…)

spine-side picture of books discussed in this post 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.

Broadly, I categorize the books as under:

  • Information on dementia and related care:
    • Textbooks, medical explanations, and books suggesting care approaches for dementia
    • Dementia books 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 and; 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.

Information on dementia and related care: Textbook style explanations of dementia and care

cover of Handbook of dementiaHandbook 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.

cover of Handbook of dementiaUnderstanding 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 page.

cover of Insight into Dementia Care in IndiaAn 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.

Information on dementia and related care: Dementia books other than English

cover of Chitadu Chorayu - Dementia Ni DuniyaA 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.

cover of Dementia ParicharyyaA 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 page.

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.

cover of  Alzheimer's: The Mission ContinuesIn 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 page.

cover of Krishna: Living with Alzheimer'sKrishna: 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.

cover of A World WithinA 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.

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.

cover of No Aging in IndiaNo 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.

cover of Unforgotten: Love and the Culture of Dementia Care in India 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.

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.

cover of Our Nana was a NutcaseOur 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.

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 (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:

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

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

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

small paragraph on dementia in Assamese

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

Modifiable and non-modifiable risk factors for dementia

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

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

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

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Dementia In India, 2015: An Infographic

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

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

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

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

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Ideas to support dementia care in India

As a caregiver for many years, I have shared my personal experiences and related musings about dementia caregiving through over 200 blog posts (see them here). I now work actively in the dementia domain (my work and how I support). I have also created resources for volunteers in the dementia domain.

Persons who want to support dementia care in India need helpful and practical projects they can take up. These projects should match their inclination, time, energy, and skills. This post is about my effort to create a set of potential projects they can consider.

First, some background. Many persons feel they should do something for caregivers. Unfortunately, very few are able to convert their intention and enthusiasm into action. Often, when they realize how much needs to be done, they become unsure about what specific actions can help. They want to make a difference, but get discouraged or intimidated. They then get busy in other work, or use their energy for some other cause that seems easier to contribute to.

A lot needs to be done to support families coping with dementia in India. Some of these are major initiatives, such as at the policy and Governmental levels. But individuals, NGOs, professionals, and organizations can also do many things, even with limited time, energy, and funds.

Small, clear, well-thought actions can make a real difference to at least some families. Such actions are practical, and also give great satisfaction. On the other hand, volunteers can get discouraged if they aim too high because they cannot pin down how exactly to achieve that goal. They are not able to get visible results that match their high expectations of success. So they feel overwhelmed and helpless and eventually give up.

I am therefore collecting and documenting a set of do-able ideas suitable for varied types of potential contributors. I will make this document/ presentation available online. I hope this document will provide existing and prospective volunteers at least some ideas that appeal to them and that fit their energy, funds, availability, and personality.

The tentative format for each idea (suggestions are welcome) is:

  • Scope and brief description of the idea
  • The problem it solves
  • Who may find this idea suitable to implement
  • Background knowledge needed
  • Elements to plan for
  • Examples and references of similar projects implemented
  • Resources to contact (for data/ support/ networking/ potential associates)

Please note that I know that we need broad visions and missions and nation-level strategies and actions. We need to “spread awareness,” “support caregivers,” “ensure early detection of dementia,” and “make dementia a national priority” and so on. These visions and missions require major actions by well-networked, well-informed persons who have the required time, energy, funds, etc.

But for my current project, I am not looking at lofty intentions and large national or international scopes. I seek easy-to-pick-up ideas that can be done at a more modest and practical level. Ideas that persons reading this blog can think about doing.

The persons/ entities who may find these ideas useful are expected to be:

  • Persons who want to donate small or moderate amounts of money effectively but don’t want to get pulled into too much evaluation or work
  • Persons looking for areas where their organization can fund or participate in projects (such as, projects under “social responsibility”)
  • Small to medium sized NGOs interested in eldercare or dementia domain
  • Family caregivers who want others to not suffer (“my experience should not go waste”) but don’t have much time and are concerned about confidentiality of participation
  • Concerned persons with some spare time and energy, who want to use their existing skills (communication, technology, etc.)
  • Concerned persons who are interested in creative work (art, plays, etc.)
  • Students, artists, and others who want to complete a small, useful project in dementia and may want this to be part of their college work/ add to their resume

Some examples of the types of ideas (to show how I am keeping the scope of my ideas simple and practical):

  • Fund the translation of a dementia information brochure from one language to another, including funding the translation and the cost of experts validating that translation.
  • Fund a local hospital’s neurology/ psychiatry department so that they can host monthly support group meetings
  • Arrange an inter-generational sensitization trip, such as a trip of school kids to a local dementia centre
  • Share your caregiving experience through comments on sites where you can share without violating your privacy (maybe anonymously). Decide to do so once a week (or month, whatever suits you).

Basically, I am starting a project to collect and document dementia-related ideas that are useful, doable, and give a sense of completion and satisfaction. Ideas you can pick up one at a time, do and complete satisfactorily, and either stop or pick up one more idea.

What I am doing: I am using my notes as well as published reports and papers (national and international) to get a starting set of ideas. I am trying to recognize do-able components of available ideas, and then select what seems important, useful, and practical to do. I am gathering data on successful initiatives and prototypes to add to this idea list.

Here is what I need from you: data and ideas. These include:

  • Send me data that can help me in my research: published papers, studies, news/ accounts of initiatives that worked (or failed, and why), examples of prototypes of caregiver interventions, and so on
  • Send ideas you consider practical to do. I’m sure anyone concerned about dementia has many big and many small ideas; send me ideas that you think fit my request. If in doubt, send the idea anyway.
  • Send any other suggestions.

I hope you will help.

Think of something useful that can be done even with limited energy and resources, even with constraints. Consider specific ideas where you can imagine someone achieving an end result in a short time frame. Then add a comment below (you don’t have to give your name if you prefer anonymity). Even sharing such ideas as comments may help others who are looking for project ideas. Of course, you can also email comments to me (see my contact information here).

Please share this post with anyone you think may be interested.

Thank you for reading.

(For your reference, here are the links referred to above):

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

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

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

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

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

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

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

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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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