Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 1)

Everyone agrees that public awareness of dementia needs to be better, but is it improving? How good are the available ways of spreading information? After failing to locate studies on dementia awareness levels and trends, I decided to do a desk-based study to get some insight. This was my way to start understanding awareness levels and trends in India (some thoughts on this were shared in an earlier blog post.)

For this study, I tried to understand how newspapers in India mention and explain dementia and related care and how effective their coverage was for spreading awareness and useful information to laypersons.

Through my study, I looked at quantity, quality, and scope of coverage of the published articles. I then placed them in the context of awareness and support to laypersons.

The study approach, observations,and suggestions are detailed in this post and the next, along with specific data, but for a quick reference, here is a peek:

Key observations:

  • I found a vast difference between the coverage of dementia in Hindi newspapers and English newspapers. Coverage in Hindi was much, much lower. It was also different in the mix of article types. Given that Hindi newspapers lead in both readership and circulation in India, understanding more about this aspect can be very useful.
  • The scope of coverage of dementia and care omits many important aspects related to dementia: As such articles that mention dementia (or Alzheimer’s Disease) increase familiarity with the term ‘dementia’ and imply a serious medical condition. But in the articles studied, most stayed at this level–they just mentioned the words or added an accompanying shorthand phrase (typically “memory loss” or “भूलने की बीमारी”). That is, most articles did not provide any friendly description of the symptoms or other aspects of dementia or related care. Even the very few information-carrying articles available ignored or barely mentioned important aspects such as the range of changed and difficult behaviors, progression and duration of dementia, the critical role of care, and what caregivers need to learn and plan for.
  • Misinformation, myths, exaggerated claims, and misleading headlines were common. They could be seen in all types of articles, even informative ones. Such misinformation can mislead, or even harm, negating a lot of the benefits found in some of the more useful articles. Some stigmatizing depictions were also present, often in catchy and witty ways that can “stick”.

The findings can help identify many actions that can improve coverage in newspapers. For example, interviewees and speakers can counter stigma and debunk myths. They can be especially alert while communicating concepts that reporters tend to misunderstand/ misquote/ misrepresent. Reporters can be given supplemental written material to help them write more useful articles. Areas that are typically not covered in articles can be specifically included while interacting with reporters.

(Read the full blog entry for detailed observations and suggestions)

In this Part 1 of the two-part blog post, topics covered are:

The second part provides the content analysis (of 650+ Hindi and English articles), observations, conclusions, and suggestions. Sections in this are: (1) Approach to assessing a published piece, (2) Perspective 1: Article types, their relative proportions, and the way they cover dementia, (3) Perspective 2: Content effectiveness for each aspect relevant for awareness/ information, (4) Suggestions to improve the situation, (5) In conclusion, and (6) References. Read it here: Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 2)

Why study newspaper coverage


Common morning-walk sight: security guard reading a newspaper

The Neilson readership survey, 2014, shows that daily newspapers are a big part of media consumption. Reading newspapers is part of the morning ritual for many literate people across social and economic classes. Many readers any assume anything printed in a newspaper is correct. This makes newspapers a powerful medium for reaching out.

Editors commission and approve articles based on the availability of information and events to publish (supply) and what they think readers want or like (demand).

Useful articles result in desirable outcomes and form a reinforcing positive loop. Desirable outcomes include better diagnosis-seeking, better coping/ supporting/ living with dementia, openly sharing experiences, and removal of negativity and stigma. This means increased dementia-related demand, and perhaps some corresponding increase in the availability of services and events. All this in turn increases demand for informative articles and event reports, hence the chance of more pieces being published.

Misleading or stigmatizing articles form a reinforcing negative loop. Some articles are unproductive and harmful. They mislead readers by giving wrong or confusing information, or by stigmatizing the condition. This creates undesirable outcomes. Families may hide dementia and related challenges, or face criticism from others. Jokes and mockery pushes families into silence. Newspapers may pander to this aspect and increase sensational or stigmatizing portrayals, or may assume there is no demand and reduce all coverage.

My study looks at newspaper coverage in quantitative and qualitative terms to get some idea of the current status, and to explore how coverage can be changed to create a stronger positive loop.

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Highlights of the Approach Used

The objective was to understand what newspaper readers learn about dementia on reading the top newspapers of India. I looked for impact on two categories of laypersons: (1) general public, not particularly interested in dementia and (2) readers who want information/ solutions related to dementia (like caregivers). The steps followed were:

  • selecting the newspapers to study
  • collecting published articles that met my criteria
  • looking at the quantity of articles, trends, and also analyzing the content
  • using the observations to derive suggestions for making newspaper coverage more effective for dementia awareness/ support.

This was a single-person desk-based study, not validated by anyone. My observations on content are influenced by my perspective. I have shared my salient observations for others to consider, and explore further, or do independent studies, etc.

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Selection of Newspapers Studied

I considered the readership and circulation data available on the Wikipedia pages. Hindi newspapers top both the circulation and the readership lists, as do newspapers in other Indian languages. English papers occupy only 3 of the top 20 positions in circulation, and 2 of the top 18 in readership. I decided to study the top three English newspapers and the top three Hindi newspapers:

  • English Newspapers Studied: Times of India (TOI), The Hindustan Times (HT), and The Hindu (TH)
  • Hindi Newspapers Studied: Dainik Bhaskar (DB), Dainik Jaagran(DJ), and Hindustan (LH)

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Gathering Data on Published Pieces

To understand the way newspaper readers may encounter information on dementia and related care, I looked for published pieces available online that mentioned “dementia” OR “Alzheimer” using English and Hindi spellings. I did not attempt manually reading printed copies of newspapers. The steps were:

  • Obtaining links from the newspaper’s search feature using various search combinations.
  • Supplementing this set with Google advanced search where I looked for the words within the newspaper site.
    • For Hindi papers, I processed all results for all years for which data was available
    • For English, the results were too many and full of duds, so I confined myself to the past one year (2015). I checked each search result page from Google till I had processed all search result pages or reached a point where two consecutive search result pages yielded no new link.
  • Combining results and removing duplicates (identical title and content)

Limitations: (1) This approach cannot collect print articles that have not been made available online. (2) It depends on various search engines to locate relevant pieces.

Observations during the search:

Different newspapers used different approaches for their online presence. They differed in terms of what they make available online, how much old data was available, and their search interface and options. Searching the Hindi newspaper sites was especially tricky and did not work well for some newspapers, but fortunately, Google advanced search worked very well.

I obtained different but overlapping results from the two search methods I used (newspaper site search feature and Google advanced search).

Fortunately, by combining the multiple searches, I was able to get a good base of articles within and across newspapers. These results represent the type pf articles in the newspapers and also give an approximation of the proportion between various article types.

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Search Results Obtained (indicates quantity)

(all data was gathered during the project execution dates: January 11-31, 2016)

I got 234 articles from Hindi newspapers. These were the articles I retrieved from all the three top Hindi newspapers, spanning whatever was available online across the years. (Note: different newspapers had started their online archival in different years).

  • The newspaper-wise count: [DB]: 77 articles from 2012 to 2015, [DJ]: 73 articles, from 2011 to 2015, and [LH]: 84 articles from 2009 to 2015
  • Since all newspapers had archival in place for more than three years, I combined the results to see data for last three years (2013, 2014, 2015). The distribution was: 48(2013), 46(2014), and 78 (2015).

Search results were much higher for English newspapers, so I confined my English-article study to articles published in 2015. I got 419 articles from English newspapers for all the three selected newspapers, pertaining to one year (2015).

  • The newspaper-wise numbers of retrieved articles was: [TOI]: 134 articles, [TH]: 195, [HT]: 90, all pertaining to 2015.
  • To get an idea of trends, I tried searching for data corresponding to 2010 also, but was only able to obtain it for one newspaper, TH: I obtained 195 results (for year 2010).

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Summary of the Quantitative Analysis

Here are the preliminary observations, based purely on the quantity of coverage:

  • Hindi coverage (in quantity) is well behind that of the English coverage. The article count I got for 2015 was 78 for the top three Hindi newspapers, and 419 for the top three English newspapers. Even taking into account the fact that the searches may not have helped me retrieve all the articles, this difference is significant.
  • The data does not confirm that coverage is increasing over the years for either Hindi or for English newspapers.
    • The Hindi newspaper article counts for the last three years are too low to state that the 2015 figure indicates an upward trend in Hindi newspapers and is not just a fluctuation or a result of a changed archival method.
    • The only English newspaper data available (TH) showed no change from 2010 to 2015.

Note, however, that what really matters is good quality coverage and lack of stigmatizing coverage. All 650+ articles were analyzed to understand this, and I share my observations and suggestions in the next post. (the link will be included once the post is available)

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Thanks for reading!

Part two of this blog post is now available. Read it here Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 2)

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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:

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

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 care in languages 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 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:

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