Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 2)

This blog post is part 2 of a two-part series on newspaper coverage of dementia in India. ((read part 1 here)

Background: I had undertaken an exploratory study of the dementia/ Alzheimer coverage in the top Hindi and English newspapers to see how existing coverage may contribute to awareness/ support. In part 1, I documented my selection of newspapers how I gathered articles, and some initial analysis based on quantities (read part 1 here). In this post, part 2, I share my content analysis and suggestions.

Topics of this blog post:

Approach to assessing a published piece

For my content analysis, the reader profiles and the possible desirable outcomes I considered were:

  • The (uninterested) general public: Typically persons who know nothing or very little about dementia. They may have seen persons with dementia symptoms, but and are not looking actively looking for information, and may not find the information useful. Desirable outcomes for this profile are increased alertness towards symptoms, better diagnosis-seeking behavior, and more supportive attitudes towards families living with dementia.
  • The solution-seekers: These are persons who are concerned about dementia, typically because they or someone close to them has dementia. They are likely to read anything connected with dementia and will probably notice the word even if it is buried deep in an article. Desirable outcomes for these persons are better ability to live with and support dementia, reduced stress, reduced sense of isolation, and more willingness to share their experiences.

For the analysis, I looked at the full set of articles using two different perspectives.

  • The various types of articles, the proportion in which these types appeared, and their typical coverage of dementia.
  • The aspects relevant for spreading dementia awareness and information in the public, and checking how effective the existing coverage was with respect to each such aspect.

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Perspective 1: Article types found, the relative proportions, and the way they cover dementia

Types of articles mentioning dementia :

Hindi English
Wellness/ study reports 142 (61%) 185 (44%)
Event related articles 32 (14%) 40 (10%)
News articles mentioning dementia 24 (10%) 150 (36%)
General articles 33 (14%) 34 (8%)
Others 3 (1%) 10 (2%)
Total 234 articles (3 newspapers, all years)(100%) 419 articles (3 newspapers, only 2015) (100%)

Articles related to wellness/ health/ miracle-advance in medicine/ research studies: This was the largest category of articles, both in Hindi and in English. The percentage of articles in this category was higher in Hindi than in English (61% compared to 44%) as shown in the table alongside. Most of these contained only the words dementia/ Alzheimer’s or a small phrase about them, mainly focusing on memory loss. Some had sensational, confusing, or misleading titles or content. A few contained a bit more detail, but often these were complicated and buried.

Announcements/ reports of events and inaugurations around Alzheimer’s, or some related field (e.g., geriatrics). These typically related to World Alzheimer’s Day functions, conferences, release of reports, and were mostly in the months of September/ October. These formed 10-14% of the articles in both Hindi and English (see table). Article scope was often a mix of things such as names of experts, event venue and topics talked about, dementia statistics, etc. Some also included layperson-friendly information on dementia symptoms, risks, and the diagnosis process.

Current news articles that contained some mention of dementia. These were an assortment of celebrity news, crime news where some party had (or claimed to have) dementia, drug company news, business news, reviews and award announcements for movies, books, etc. The Hindi newspapers had a far lower percentage of articles in this category (around 10%) compared to the English newspapers, where they were a significant 36% of the total. Most such articles only contained the words (dementia or Alzheimer) or the standard phrase on ‘memory loss’.

General articles that mentioned dementia. These included personal essays, or special health features. They formed around 8-14% of the total coverage (see table). Many of them gave at least some useful information on dementia or care, and some were very useful.

Other articles that mentioned “dementia” and “Alzheimer”. These included many where these words were used as part of normal language to connote forgetfulness/ unacceptable behavior, etc. Some of these mocked politicians or complained about systems or used the words to joke. They formed around 1-2% of the total coverage in both Hindi and English.

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Perspective 2: Content effectiveness for each aspect relevant for awareness/ information

Establishing familiarity with dementia/ Alzheimer as a serious medical condition

Current newspaper coverage is encouraging in terms of basic exposure to the words, both in Hindi and English. “Dementia “and “Alzheimer” seem to have become part of lists used in wellness articles along with other serious conditions (diabetes, cancer, etc.).

Studies on dementia are being reported, too (though far less in Hindi than in English).

Exposure/ familiarity are a good foundation for an awareness drive. However, they work only if the usage is positive and if these are supplemented with availability of enough reliable and usable information.

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Information conveyed regarding salient characteristics of dementia

Around 73% of the articles only contained the word dementia (or Alzheimer) or used the context or a shorthand phrase/ context to imply one aspect of dementia.

In the Hindi pieces, the most emphasized aspect was forgetting. Other phrases indicated age-related illness and mental illness. Typical phrases were: भूलने की बीमारी, स्मृति लोप, याददाश्त की कमजोरी, स्मरणशक्ति की समस्या, बढ़ती उम्र की समस्या, दिमागी बीमारी, मानसिक बीमारी. A scant few articles mentioned brain and cognition, often using rather Sanskritized Hindi: संज्ञानात्मक (ज्ञान संबंधी) गिरावट, मानसिक क्षमता ह्रास, बोध क्षमता, संज्ञान से जुड़ा विकार, मस्तिष्क का क्षय.

Anecdotally: I asked some middle class persons what they understood by some phrases (संज्ञान , मानसिक क्षमता ह्रास, cognitive impairment, neurodegenerative disease). Many had no idea of the meaning. None of them could come up with examples of behavior changes they would be alert about. I queried about “memory loss”, and almost everyone told me they suffered from it. Misplaced keys, forgotten activities, and forgotten names of people and movies were quoted as proof.

English newspaper coverage also mainly mentioned memory loss, age-related, and mental-illness, but other phrases were fairly common, too, such as: cognitive decline, cognitive impairment, neurodegenerative disease, etc.

All in all, these one-phrase depictions don’t inform laypersons what to be alert about, or how dementia/ AD symptoms may be similar to or different from old age. Terms like memory loss and old age are too all-encompassing for practical use.

On a related note: In both English and Hindi, this over-identification with forgetfulness has some very unfortunate implications because of the tendency of people to use it to mock/stigmatize. More on this later.

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Information conveyed on dementia basics


Newspapers: a common morning sight at any shop

While many articles talked of the need to avoid getting dementia, or suggested superfoods or healthy living/ active ageing for this, they did not explain dementia symptoms, duration, progression, and challenge clearly enough or explain why it was considered serious.

  • Of the articles studied, only around 6% explained some of the dementia symptoms in friendly, understandable ways that I considered helpful to laypersons.
  • Many aspects of dementia were neglected in almost all articles, such as the duration, progressive nature, the changed and difficult behavior, increased dependence, reduced mobility, possibility of early onset, possibility of initial symptoms other than memory loss, etc.

As pointed out earlier, the “memory loss” aspect was repeatedly emphasized. This, along with missing or minimal mention of other symptoms, resulted in very unrealistic depictions.

For example, some articles said things like “a person may even forget the names of family members” as if that was the worst that could happen, and ignored problems like persons not being able to do even simple tasks, incontinence, inability to swallow, etc.

Seriousness of dementia was conveyed using terms like “debilitating” condition, “battle”, “throes of dementia”, “afflicted” and “suffer”, but these terms, in the absence of explanations and examples, do not increase the readers’ understanding or appreciation of the difficulties of dementia.

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Information conveyed on dementia prevention/ treatment

While articles with wellness advice and general interviews with doctors included some useful tips for reducing risk, and also discussed treatment, they were also sometimes misleading in big ways and small.

  • Wellness type articles were sometimes somber and useful; others carried exaggerated claims, usually about a superfood/ super-remedy. As articles on superfoods keep getting published, this may not be a problem, as people are used to reading such claims in articles with titles like “20 uses of .”
  • Misleading presentations of study reports are more problematic. Articles often presented the result of a single study as if talking about a well-tested cure or an established medical fact.
    • Sensational headings were common and tended to be simplistic and misleading. Even if the article text was balanced, the title’s dramatic impression could linger.
    • In Hindi newspapers, many of the translated research-related articles were heavily abbreviated; they did not include the disclaimers and nuances present in the English equivalents, and hence can confuse/ mislead.
    • Some study reports were useful; they reminded us to adopt healthier lifestyles.
  • Interviews of experts (doctors, nutritionists, others) for health/ active ageing, or specific interviews for dementia.
    • Some such articles combined medical information from a doctor with non-medical advice (such as claims regarding superfoods/ herbs); combining the two in one article may be seen as approval by the expert quoted elsewhere in the article.
    • Some experts were quoted as saying that following their advice will “prevent” dementia. To most laypersons, “prevention” means never getting the disease.
    • Sometimes articles claimed (and even quote experts) that treatment will stop the disease or cure it. This could make people think dementia can be reversed.

In summary, some articles contained useful information on risk, treatment, diagnosis, but many of them also included misleading information. In articles quoting experts/ doctors, such misleading/ wrongly quoted tidbits are more believable, and hence more harmful.

Unfortunately, there were almost no articles that explicitly busted myths or squashed misleading claims or clearly and firmly corrected the misquoted expert-speak.

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Information conveyed on dementia prevalence

People take a condition more seriously if they know others with it, and can see how tough it is to cope with.

One way this sense of closeness/ immediacy is reinforced is through news items that mention that someone has dementia (a celebrity or someone else). News about creative works (movies, books, plays, etc.) that include a character with dementia also help. Even a single-word mention ( had dementia) makes dementia more “real.”

  • Articles in this category: Just 22 (around 9%) in Hindi fell in this category; there were many more (137 articles, around 33%) in English. This could be because the persons reported about in Hindi newspapers are not of the profile that admits to having dementia, or the creative works of interest to Hindi readers do not depict someone with dementia.

The possibility and challenges of dementia also hit harder through articles where families/ acquaintances describe their personal dementia-related experiences.

  • Articles in this category: I found fewer than 5 Hindi articles that presented real-life care situations (this is too low to even consider what the proportion is). The number was better in English– 30 articles, (around 7%). Such articles often involve locating and interviewing families, which means more effort. Hindi lags behind English in this.
  • Many personal stories were featured in city supplements of newspapers, not in the main newspaper, and were available only in some cities, limiting their visibility.

Prevalence is sometimes conveyed using statistics. Such mentions were often associated with event reports, and more visible in English newspapers. However, most readers don’t remember population and ageing numbers. They do not mentally convert national prevalence figures into an understanding of how prevalent dementia was in terms of people around them. These are just large numbers, and they don’t even remember the units of the numbers after some time (was it a lakh? a million? a crore?). I, therefore, do not consider such coverage effective in conveying (at an emotional level) that real people–we and those around us–can also get dementia and face major challenges.

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Information conveyed on dementia caregiving

Mention of caregiving in dementia articles, if present, was usually perfunctory and confined to platitude-filled sentences. (“They need love and care.”). Some articles included general advice on care or some tips/ comments by experts. Another source of care information was articles where people share personal stories or when a news item describes challenges that families faced because of coping with dementia.

  • Articles in this category: Around 14 (around 6%) in Hindi, and somewhat better in number/ proportion at 56 articles (around 13%) in English.
  • Even articles that carried some care-related information/ experiences did not provide a comprehensive view of care. They usually ignored aspects like the extent and type of care, and how to prepare for it. They did not mention counselling, training on care skills, resources, etc. Even collectively, they did not have enough detail for caregivers to appreciate the range of care-related work that needs to be planned for and done, and how to proceed.

The much lower coverage of the care aspect means readers don’t think about how dementia may impact the family. Seen along with other coverage gaps, newspaper coverage ends up depicting dementia as some sort of memory loss problem that can be stopped or removed using medicines and love.

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Negative factors in information conveyed–stigma/ mocking

Unfortunately, the close association established between dementia/ Alzheimer with forgetting/ confusion and with mental illness has resulted in the words being used in normal language while depicting confusion and forgetfulness.

Here, for example, are some phrases from essays on utterly unrelated topics: “When the establishment is going senile, it feels everyone else has Alzheimer’s.” or “If you have been lucky to encounter such an odd creature, what do you think is wrong with him? Senile dementia?”

Worse, dementia and Alzheimer are used to mock people, especially politicians. In one instance, some workers of one party sent Alzheimer pills to a senior leader of another party as a “unique” protest. Jokes and accusations are increasingly made about politicians having Alzheimer’s. Such pieces seem more interesting than staid interviews and fact-filled articles, and get shared and liked on social media. This usage is damaging and difficult to stop.

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Overall usefulness of articles

Many articles containing the word dementia/ Alzheimer had only the words or a phrase or so. Some had a bit more, but often not in a usable, friendly way. I consider an article useful if it gives usable information on dementia and care to laypersons without stigma, and contains a good amount of information or at least conveys one important aspect very well, and where the misleading tidbits are relatively low. My subjective assessment, summarized:

  • Both in Hindi and English, only around 9% of the articles were reasonably useful for laypersons to learn about dementia and care. However, the quality of usefulness was somewhat higher in the English articles.
  • Many articles, including useful ones, contained a least some misleading/ confusing information. I tried to locate articles where the confusing/ misleading element seemed serious enough to (in my opinion) increase the chance of harmful beliefs or decisions. I categorized 15 Hindi articles (around 6%) and 12 English articles (around 3%) as harmfully misleading. Also, some articles directly stigmatized dementia. I found 4 Hindi articles and 10 English articles in this category.
  • Note, too, that the quantity of articles in Hindi is much lower. Considering the overall picture, we have roughly 2-3 reasonably useful articles per year per newspaper in Hindi, and around 12-14 reasonably useful articles per year per newspaper in English. None of these useful articles provided comprehensive coverage. Put together, too, the total coverage misses many important aspects of dementia and care.
  • On the whole, the quality and scope of coverage of the useful English articles was better than that of the useful Hindi articles, and the misleading tidbits based on studies were fewer in English. English articles also did a better coverage of the care aspect and had more coverage that could make dementia seem more real to readers. But stigmatizing usage of the word was high.

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The daily newspaper, part of the morning ‘chai’ routine

Suggestions to improve the situation

Stop the chances of a negative information loop . Counter misleading information, debunk myths, and condemn use of dementia/ Alzheimer to mock others. Talk and write about this, and build up public opinion against such stigmatizing. Stop the tendency to mock/ stigmatize before it reaches the levels it has reached in other countries because once it sets in, it is extremely difficult to correct.

Improve the overall quality and quantity of coverage in all newspapers. Some things to consider:

  • Use every event and occasion to disseminate usable information about dementia and care in simple, understandable language.
  • When talking of dementia, take care to also convey the serious aspects of dementia and care, not just “memory loss” or initial symptoms. Talk about challenging behaviors, late stage dependency, the duration of dementia, progression, etc. Use examples and simple language.
  • Take active steps to avoid being misquoted or quoted out of context. Often reporters, because they do not understand dementia well enough, miss nuances and hence inadvertently mislead readers because of the way they frame a sentence or select sentences from a larger interview. Make the reporters’ job easier and less prone to error.
    • Provide reporters material they can directly use in sidebars and as explanations.
    • Provide reporters press-releases of events
    • For expert interviews, opt for e-interviews and ask that you be quoted verbatim, and that if any paraphrasing is done, it should be validated with you. In some cases, reporters may even agree to show you the section of the article draft pertaining to your interview, especially if the interview is a long, informal phone chat and the article is not being rushed because of a deadline.
  • Improve visibility for family experiences of living with dementia/ supporting dementia. Talk about the critical role of care, the planning and work it requires, and the support available. Help reporters locate and contact potential caregiver interviewees.
  • Some reporters/ writers have a family member with dementia. Encourage them to write general articles and help them do a good job.
  • In general, try to get useful coverage throughout the year, including coverage in the main sections of the paper and not just city supplements.

Additionally, find ways to get useful visibility for dementia in non-English newspapers. This is where bulk of the readership is. Understand how such newspapers select topics and articles, and use this to get more visibility and to spread awareness and information effectively. Some things to consider:

  • Develop terminology in Indian languages that is easy to understand, non-stigmatizing, and yet does not water down the seriousness of the problems faced in dementia. That way, reporters will have a set of words/ phrases to use and will not end up using stigmatizing words or words that trivialize the problems.
  • Try to get coverage in Indian language newspapers. Invite their reporters for events. Provide them press releases to use even if they cannot attend. Actively seek reporters/ writers of Indian language papers to write general articles included. Help them using various ways (as discussed earlier) so that they can write more effective and useful articles.
  • Appreciate the problems of translating and abbreviating study reports/ research-related and find ways to dispense more balanced information on such studies. Directly counter/ debunk wrong information when talking to reporters or addressing gatherings.

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In conclusion

This two-part blog entry provides the highlights of what I learned from my study; I have not commented on many other interesting aspects like article attractiveness, readability, and retention of content. I consider the data presented above sufficient as a starting point to act. Of course, all my work was based on articles available free online and anyone interested can gather and study such articles, and draw their own conclusions and suggestions.

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References

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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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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

I have several blog entries where I discuss awareness, but here are some links to posts that could be particularly relevantif you found the above discussion interesting:

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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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Dementia In India, 2015: An Infographic

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Helping professionals appreciate the realities of dementia home care

I started sharing my experiences and thoughts on dementia and care online over six years ago. Even back then, I considered awareness to be the key component–that included informing the general public and persons handling services about dementia and related care. I didn’t realize then that even volunteers and professionals working in this domain, persons who were training caregivers and counseling them, needed to become more sensitive and informed about how tough it was to provide home care for someone with dementia.

I’d heard the advice that volunteers and professionals gave caregivers, of course. They taught relevant skills like communication, but the advice also included material I considered simplistic and impractical. Nor did they pay emphasis on how tough the caregiver adjustment would be, how mistakes were inevitable, how emotional the journey was.

Then, around three-and-a-half years ago, I heard a volunteer criticize caregiving families while addressing a group of would-be volunteers. This volunteer stated that families were “cruel” and “selfish” and blamed them because they did not take patients to doctors as often as the volunteer considered appropriate. Moreover, this person criticized caregivers for not spending enough time with the patients and not being creative enough, and compared this time and care to what professionals provided in institutional settings (the very, very few such facilities that exist).

I was stunned to realize the extent of this volunteer’s ignorance/ disconnect with home caregiving realities.

To me, the difference between the two settings–institutional and home–had always been obvious. In an institution, workers have opted for this career. They are trained, have the benefit of multiple specialists, and operate in a well-designed facility. They work for limited hours and have no concurrent roles and responsibilities while at work. They have no emotional past with the patient and are not traumatized because the deterioration is happening in someone they have know for years. And so on. Even a bit of thought would throw up a range of aspects in which the institutional care situation differs from home care. I could understand lay persons not appreciating this difference in situations, but I expected volunteers working in the dementia care domain to have a more realistic view. How could such a person be ignorant of the home care situation, and so judgmental?

Clearly, even trainers and volunteers in this domain needed to be informed about dementia home care realities.

I began putting together a note on the context of dementia home care in India. It took some pruning and prioritizing to and redrafting to create a short, compact version. I uploaded this note on slideshare.net at Dementia Home Care: Context and Challenges in India.

Initially I saw the note as something that volunteers and professionals may find useful to help home caregivers through relevant and practical advice. But later I realized that the note can also help caregivers. It could be used to get an idea of their role and how tough it may be. It could also help them understand what advisers may be assuming and know what they need to clarify/ explain in order to get pertinent advice.

The note, available on slideshare at Dementia Home Care: Context and Challenges in India, can also be viewed in the reader below.

I have continued to try and explain the realities of home caregiving to volunteers and professionals. This includes one-on-one discussions with volunteers when I hear them say something insensitive. If they seem open to listening, I share data and anecdotes on home caregiving challenges they may have missed. Sometimes I get a chance to present the family caregiver perspective to professionals in forums. Below, for example, is a recent presentation I made on caregiver issues and challenges.

The presentation, available on slideshare at Caregivers: Issues and Challenges Faced, can also be viewed in the reader below.

Much still needs to be done to improve the professionals’ understanding of home care realities. I continue to hear comments that confirm that even professionals who make presentations on caregiver stress have limited understanding of the range of issues and challenges and this results in their getting critical and judgmental, even blaming caregivers if the care is not happening in ways they feel is appropriate.

I think this incomplete understanding of home care realities is partly because caregivers are unable to share their situations with honesty and in sufficient detail. Multiple reasons exist for this reticence, and not enough is happening to facilitate bridging the disconnection between families and professionals.

One such incident happened a few months ago, when a professional who was talking about some caregiver query burst out in an obviously frustrated tone: “I don’t understand why caregivers get tired doing the work. Can’t they do the work without getting so emotional and involved? And why do they complain? They all chose to be caregivers, didn’t they? You chose to be a caregiver. You needn’t have been a caregiver if you didn’t want to.”

The person who said this is very active in this domain and meets patients and families regularly. Now me, I’m not a caregiver any more; my mother is dead. Even when she was alive, I had stopped needing support and empathy from professionals many years ago because I created my own emotional toolbox to cope. My first reaction at this outburst was extreme discomfort. I want to get away from this conversation. Then I paused because I realized that this person would be continuing to meet patients and families and would continue to advise them with this poor understanding of caregiver challenges.

I spent the next hour or so explaining things to this person using facts, concepts, anecdotes. Things such as how home care needed far more emotional adjustment and strength than institutional care such as what this professional gave. As for caregiving being a choice, I asked, “You say choice. What option do you think I had if I did not want to care for my mother? A choice means you think there are options. List the options for me.” Interestingly, this person kept repeating the “caregiving is a choice” like a mantra a number of times before realizing that there was no option, hence no choice.

The conversation caught me unawares. I had expected this profile of persons to not need any explanation. Fortunately the professional was a good listener and ended the conversation thanking me, saying, “I think I am beginning to see what you mean; no one ever talked to me about these type of problems before.” Clearly the professional had heard families express overwhelm but had not heard explanations of why they were overwhelmed.

To me, this confirms the Catch 22 nature of the problem.

Yes, most volunteers and professionals don’t appreciate home care realities. But not understanding persons of a different profile is a common problem. The fact is, most of the times, we don’t invest time and energy to truly understand the life situation of others. Also, we don’t find it easy to appreciate problems that others face–we remain caught up in our own world views and problems. And yes, caregivers obviously want to be understood and respected, but they are also unable to explain their situations, either out of reluctance and privacy, or because they don’t trust the audience, or because they don’t have enough time for sharing their situation.

Essentially, if volunteers and professionals do not understand and appreciate the home care realities, and if this stops caregivers from explaining their situation and problems, we have a logjam. Maybe if just a few families opened up, changes would begin.

I’m not sure whether to be hopeful or despondent as such; I swing between the two. Well, I’m doing what I can…

Links/ sites referred to in this post:

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For those concerned about dementia and caregiving in India

The poor state of dementia awareness and caregiver support in India continues to alarm me, but I also fear that many persons who can improve things are not doing so because they think that the required actions will be taken by others at some grand, country-wide level, often by the government or major NGOs.

I think that is wishful thinking and not dependable.

Choosing to make one area a national priority means choosing to pay less importance to some other area. Realistically speaking, not everything can be a priority. In a country like India, struggling with multiple basic problems in areas like health, education, law and order, infrastructure, etcetera, I have no basis to expect that dementia will be made a “national priority”. Surely child mortality, primary health care, basic sanitation, farmer support, poverty eradication, reducing school drop outs, and many, many basic causes are already contending for, and deserve more national attention, funds, and priority.

I keep encountering persons who expect the government to solve the problems faced by dementia caregivers. They expect the government to ensure hospital care and better diagnosis, set up multiple respite cares and day cares and memory clinics, have special wards in hospitals, etc. Alas, it’s not going to happen in a hurry. Dementia activists may talk themselves hoarse labelling dementia as an “epidemic” but I’m sure activists in other domains–domains like AIDS, cancer, diabetes, heart problems, child prostitution, malnutrition, and so many others–have their own catchy phrases which are as alarming or more. They, too, have compelling and visible statistics to support the use of such phrases–and often have more persuasive pictures, case studies, and statistics than what dementia experts can churn out.

In my opinion, it may be reasonable to expect and lobby for some basics that facilitate dementia diagnosis and care, like including dementia-related criteria in guidelines/ checklists for senior citizen related services/ homes, including dementia in curriculums of professions like medicine, nursing, adding dementia in illnesses for which concessions are available, subsidizing adult diapers.

But it seems unrealistic to expect the government to set up special, well-equipped day care and respite care centres for dementia when girl students are dropping out of school because schools have no basic safety or even toilets. And someone even suggested to me that the Government should set up “dementia villages” of the sort shown in these articles: Inside an Amazing Village and Wikipedia entry on Hogewey. Well, I can’t even begin to explain how unrealistic and unfair that expectation is…

So to me, this means that for anything beyond broad directives/ policies related to dementia, we have to depend on NGOs and on what we, as individuals and corporates can do. And we need to acknowledge that the number of persons willing to do work is very low, and therefore being effective and focused in our efforts becomes very important. My contention remains that the root to improvement is awareness. Ideally, I’d have liked some large, funded and committed organization to work on a well-designed awareness campaign, but I don’t want to succumb to the temptation of abdicating responsibility and waiting for the “they” to do this. Let’s all do our bit anyway. Maybe things will pick up.

Another thing that worries me is the danger of expending effort in areas that are not yet relevant in India.

The problem is that some of us, even those who know ground realities, get very attracted by discussions in esoteric circles of dementia activists from developed countries. We forget how much foundational work needs to be done in India before we can afford lofty dreams. We forget that, in India, we have yet to establish a foundational understanding of dementia, and our overall quality of life and social support and welfare schemes is not good. How can we justify aiming for a quality of life of dementia-affected families that is grander than what is normally found around us?

Sure, concepts like “dementia villages” and “dementia-friendly communities” are progressive, the “in” thing, and provide a more satisfying area of work compared to mundane problems like drafting caregiver material and making it available in multiple Indian languages. But can already-scarce experts afford to spend time and effort on serious and detailed discussions on such advanced topics when we have not yet discussed how to ensure that doctors know how to diagnose dementia?

Persons discussing futuristic and currently-inapplicable-in-India concepts often point out that the discussions will also result in more awareness and after some initial discussions, they will adapt the concepts for India and their work will include awareness type of basic areas. My concern is that most initiatives lose steam and run out of funds very soon. We therefore cannot squander initial momentum on discussions that will not result in improvements to those suffering from the pathetic state of affairs.

From what I have seen, this digression into currently-irrelevant concepts is a consequence of three factors:

  • Volunteers/ experts are often part of a vibrant world-wide community that discusses advanced applications and ideal situations with impressive and inspiring quality-of-life criteria, and hence these volunteers/ experts get drawn into professionally enriching dialogs and heart-warming concepts
  • They don’t pause to think that taking up one project of this sort also means not being able to take up some other project they could have done instead, and
  • They do not have sufficient, day-to-day contact with actual caregivers and patients and therefore are not personally inconvenienced by the ground-realities. They don’t, at an inner, emotional level, appreciate the day-to-day struggles of families coping with dementia. This distance means they do not experience an urgency to tackle the most pressing and immediately relevant aspects first.

Awareness is so poor that there is no way to tap the bulk of actual, hands-on caregivers. Besides, caregivers come in various stripes; the ones who most need help are not visible, not tapped, not participating in most dialogues. Patients who need the most help are the ones locked up in houses because of social stigma, or who remain undiagnosed or are labelled as crazy and shunned. So where are their voices, their concerns, their perspectives on what they need most and fastest? Where can we find persons diagnosed early enough to have insight into their dementia who may share their realities so that we can know what “friendliness” means to someone who actually has dementia? Don’t their opinions matter?

Yet I am not sure that locating persons with dementia and their hands-on family caregivers, and then listening to them, is considered as something to do before deciding what needs to be done first. I’m not even sure it gets due importance while actually working on grander projects.

Here’s what I feel: we need to get real about the situation in India if we want changes to benefit persons who need help.

We need to accept what we can expect from the government. We also need to accept that many things are pointless and unfair to expect. We need to honestly acknowledge the real status of families touched by dementia, across all economic and social status, across all geographical locations–not just upper middle class English-speaking families living in larger cities in some states.

Furthermore, we need to set aside expectations driven by international conventions and not let our priorities get warped.

Let me get this right: I am not saying there is anything intrinsically wrong about working on advanced concepts. I am saying, when resources are so scarce, then anything we pick up has an opportunity cost: something else that those resources (experts, time, corporate funds and goodwill) could have been used for remains undone. That is why we have to be careful in what we choose. If we had more volunteers, more experts and abundant resources we could have taken on projects of all sorts–both for providing basic dementia support, and for discussing advanced concepts that are not currently usable. But we have a severe shortage of people and resources in the dementia domain. We don’t have the foundation for advanced and ambitious projects like a “dementia-friendly community.”

Let’s at least reach a state when, if a family approaches a doctor, odds are that they get appropriate guidance. Or when a patient is taken to an emergency room, staff understands how unnerving this all must be to someone with dementia and knows how to be considerate. Let’s make information available in Indian languages. The list of such basics is a long one.

There’s another aspect: each contribution can help.

With so much that needs to be done, surely each concerned person can find some way to contribute? Especially as we know that there is no “they” who will wave a magic wand. Even as individuals, we can help others and add to the overall betterment of the dementia care environment. For example, we can help a caregiver by running some errands or providing a respite. We can talk more openly about dementia and improve awareness, making dementia and its care challenges visible. We can generally be more proactive and participative when sharing information and ideas. And maybe some of us have the time and energy to take up larger projects, work more visibly, share thoughts and ideas and aim for making a bigger difference.

So if you are concerned about dementia and caregiving in India, please think of what you can do for people whose lives have been, or may be touched by dementia. They will have a smoother ride because of your actions. And it’s not as if you are safe from dementia in the future; your life may be touched by it again. Actions you take today based on your concern could even help you in the future.

Related post: I had shared my thoughts on the importance of dementia awareness earlier, here: Need for well-designed dementia awareness campaigns

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On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis

Around this time last year, I was in touch with a caregiver who was trying to cope with a father’s fronto-temporal dementia. In addition to watching his decline, this caregiver was also struggling with regret and frustration; the diagnosis had been delayed because senior specialists missed it, and the family had wasted several months in bewilderment and emotional flux wondering why the father had changed so much. If they had known the diagnosis earlier, they would have been able to accept and support the father’s situation better.

Over the year since this incident, I’ve been especially alert about such cases. (This caregiver’s case, incidentally, was not an isolated case, and I have blogged about similar concerns earlier). Of course, there will be missed diagnosis for any disease, but the problem is when diagnoses are missed because of systemic misinformation and stereotypes, not merely by chance. The human cost of delayed/ missed diagnosis–misunderstandings, anger, sorrow, conflicts, and no idea how to support–can tear apart a family.

In my opinion, too much of the publicity around dementia centers on Alzheimer’s and memory loss, and too much of the depiction focuses on elderly patients. Many people, including doctors, therefore assume that the early symptoms of dementia must include memory loss and that dementia hits only the elderly. So when family doctors are consulted for a fifty year old with problems like personality changes, odd social behavior or inability to name familiar objects, they may look at stress, family conflicts, and psychiatric problems. They discard even a remote possibility of dementia because “there’s no memory loss.” Such missed diagnoses can be avoided if we redesign our awareness campaigns.

Experts have increased their earlier estimates of the percentage of young onset patients and of non-AD dementias like FTD (fronto-temporal dementia/ degeneration). But existing campaigns continue using phrases like “dementia is a disease of the elderly” and “dementia is memory loss.” Many people use “dementia” and “Alzheimer’s” interchangeably. Deeply ingrained habits require motivation and effort to change, and perhaps volunteers/ professionals involved haven’t yet seen the need for that effort. But the way I see it, such (inadvertent) exclusion/ profiling contributes to poorer visibility and thus in poorer diagnosis, which in turn hides the true prevalence of the ignored segments. People don’t think “exceptions” exist, so they are not alert about them, they don’t detect it/ diagnose it, and then, because the diagnosed cases are low, people feel justified in ignoring it. It looks like a vicious circle.

Take FTD (frontotemporal dementia/ degeneration), a group of dementias that impact the frontal and temporal lobes. Read the full post here

Dementia prevalence, life expectancy, population pyramids, and playing around with graphs and scattered numbers; also, some sundry thoughts

I recently chanced on a newspaper article lauding Bollywood for spreading awareness on “rare” diseases, lumping in this so-called “rare” category genuinely rare diseases like progeria with widely prevalent problems like Alzheimer’s Disease. And I thought, maybe this reporter did not know about Alzheimer’s before watching “Black”, but surely we cannot call a disease rare just because we may not have heard of it!

See, poor awareness about a disease/ syndrome is not the same as low prevalence. A disease may be occurring often and remaining undiagnosed, or perhaps people do not talk about the diagnosis because there is a stigma attached to it; that does not make the disease “rare”, though awareness definitely needs to be spread.

There’s a tragedy happening when a commonly prevalent disease remains undiagnosed because of poor awareness. We add to that tragedy if we call the disease rare, because to call it “rare” diminishes alertness about a disease. Most of us may read an article on a rare disease with curiosity, but assume it is exotic and only something very few get (always “others”, never we or our close ones). Labeling something rare seems (to me) counterproductive to awareness drives.

The newspaper report I mention above started me in a rather disjointed gathering of diverse data and numbers that I have not yet managed to organize mentally, but hey, this is a blog, not a paper, so here goes…

Let’s first knock off the bundling of progeria and Alzheimer’s into one group. Wikipedia’s page on progeria informs me that there are 80 cases worldwide for progeria (1 per 8 million live births). On the other hand, the WHO and ADI report of 2012 (Dementia: A Public Health Priority) estimates dementia cases worldwide as 35.6 million (35,600,000) which is 0.5% of the world population, and most of these cases are either pure Alzheimer’s or mixed dementias (that include Alzheimer’s).

Also, on what is “rare” as a disease, here are some definitions (from this site )

  • A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

I hope that finishes off my explanation of the error in using the “rare” label for dementia or Alzheimer’s.

Onwards, then, to other thoughts on numbers and stuff.

Read the full post here

Dementia is not something only “others” get: Thoughts on vascular and other types of dementia (not just Alzheimer’s)

Last week, a neighbor who had been reading my Dementia Hindi website said, “I did not know this could also be due to vascular problems” (“mujhe nahin pataa tha ki yeh naadi sambandhee bhi ho sakta hai”). Her husband has hypertension, and they are not always careful about it; she was obviously shocked at the thought that neglected blood pressure problems could be connected in any way to the sort of symptoms she had seen in my mother. Dementia, hitherto a name this neighbor could barely pronounce, had become a relevant topic now.

I’d been tense watching this neighbor read the web page (the sort of tension a parent feels when a child is onstage). She had nodded at times, frowned at times, even muttered to herself. Her detailed questions after she finished reading the page showed that she was genuinely curious and concerned. In the course of my answers I happened to mention that sometimes head injuries can cause dementia, and again I saw the info-byte hit her hard; I suspect she’ll be more particular about family members wearing helmets, too.

Her concern set me thinking.

A lot of people think dementia is something that happens to others (not to them). They do not know how close it can hit. More important, they do not know that some health or safety aspects they are currently neglecting could increase their chances of dementia.

An additional problem is the confusion between the two words, “dementia” and “Alzheimer’s”. Much of dementia awareness is woven with the word “Alzheimer’s Disease”, and many dementia support organizations work under the umbrella name of Alzheimer’s. To laypersons, these terms seem interchangeable. And because “Alzheimer’s” seems an alien name, imported and “foreign”, many people are dismissive of it, and are also dismissive of dementia.

Such erroneous interchangeability causes weird misrepresentations. For example, one newspaper may claim that India has 3.7 million dementia cases but another newspaper, based on the same expert interview, may say India had 3.7 million Alzheimer’s cases. Given that Alzheimer’s is only one of the diseases that cause dementia, common sense shows that both statements cannot be true. Yet once published, the article stands as such, uncorrected, perpetually misleading.

I’ve always been concerned about this confusion between dementia and Alzheimer’s and this submersion of dementia under the word Alzheimer’s. I have many reasons for this concern. Read the full post here

Poor awareness and the danger of very few representations

Some months ago, as part of the dementia articles that appear during the September Alzheimer frenzy, I saw an online newspaper article that (wrongly) gave a major symptom of dementia as “severe headache” in a boxed set of bullets. Curious, I read the article and discovered that the reporter had interviewed a dementia patient who also had a brain tumor. The detailed report did not claim headaches to be a dementia symptom but whoever formatted the article and added the box of bullets was probably a different person–someone in a hurry and with no knowledge of dementia.

I wondered about the persons reading the article, who may carry the impression that dementia results in a headache. And since then, I’ve been pondering about how much the accuracy and scope of representation matter for subjects where awareness is low.

I have worked in software organizations and consultancies and done assignments in a variety of settings, like manufacturing units and hospitals. If I read an article on these, I don’t get swayed by some dramatic fact; I place it in the context of what I know, and then decide how much weight to give this new input. But when I read something about a setting I know nothing about, my first tendency is to assume that what I read is both correct and representative, and it takes me a conscious effort to critically examine what I have read and to do fact-finding; I don’t have the energy for that often, and so the first (and probably faulty) impression stays.

So when I was a child and I saw movies showing cancer as the instant trope for death and dejection, as a hopelessness, I assumed that to be right. I even remember that when someone told me I was cancer, I was terrified I was about to die. (They meant the astrological sign). Similarly, I had mental pictures of bars and drinking (Helen-like dancers gyrating and drunk heroes sulking), of mental problems, and of zamindaars.

Read the full post here

How much is too much: focusing on relevant components while spreading dementia awareness

For me, everything’s in queue for my time and energy– things I want to learn and do, things I need to learn and do–and often it is just a toss-up: should I read that article? See that movie? Catch up with friend ABC? Or take a walk or eat ice cream instead?  I guess it’s the same for others, given how most people seem squeezed for time, just about managing to carry on.  I guess we all gravitate towards things of immediate interest, or things that loom large in our lives, picking and choosing, and maybe many of our choices are really a matter of chance. ..

A year has too few days and too many causes and events and accidents to fit in, and every day, newspapers select what to serve based on what is most sensational, most “human interest” as they call it. Come September  21, for example, we have the International Day of Peace and World Alzheimer’s Day vying for space along with the usual explosions, suicide bombers, murder, rape, ribbon-cutting ceremonies, a film star having (yet another) affair, (yet another) politician getting or being denied bail, and what not. Journalists are expected to squeeze a good story into a tight 1000 words which must cover the significance of a day, information about a condition, human interest stories of patients and families, comments of experts, resources — all assembled in a couple of working days.  

I don’t envy journalists, not at all.

But this compacting disconcerts me. Especially when I am asked by a journalist to compress years of caregiving into five or six sentences from which the journalist ‘s job is to select one or two to fit into a coherent article. I know that what I say may not get included.  I struggle to answer, and then worry, have I said what is most important? Who am I to know what would help most? When asked, as I sometimes am, “Tell me ONE thing you would advise a caregiver?” all I find myself saying is, “Oh boy, that’s a difficult question.” 

Some questions that I ponder about…
Read the full post here

Dementia Awareness in India: Some Recent Observations

Some days ago, I was asked whether dementia awareness had improved over these last few years in India. Not an easy question to answer, for two major reasons. One, I don’t socialize much, and most people I end up meeting are people I know because I am a caregiver and a volunteer in dementia care — obviously a biased sample. Two, even when I do get to meet other people, I don’t really go around surveying them to understand the level of dementia awareness.

But I do have some recent anecdotes to narrate –  all these instances happened in the last few months.

Earlier, when I met people outside my dementia care circles, I would not mention my caregiver role in any detail. All I’d say was that my mother needed care. This was because I found most people uncomfortable with any mention of illness, and anyway they did not understand dementia. Even a factual statement from me about what occupied a large portion of  my life was enough to make them start avoiding me, as if getting pulled into a caregiver role is contagious.  But for the last two years, as I have increased my blogging and my volunteer work in dementia care, if someone asks me what I “do”, I say I am a caregiver and that I also do volunteer work in the area of dementia care. This has led me to some of the experiences that I am sharing below.

I have qualified in engineering and management from reputed institutions, and worked in well-known organizations before starting my own consulting practice. So there are people who expect me to be a “professional” and whom I meet in various alumni meets. It was in one such alumni party that I met a high-profile social worker, whom I shall call ”Cee”.  A person in the mid-50s, with a family that included parents and elderly in-laws, Cee spends most of the time helping some big volunteer organizations with their strategy, getting them funding, doing  advocacy – things like that.

Cee and I got talking, and I tried to understand more of what Cee was doing. I was asked, in turn, about my own work and career, and I explained that I was a dementia caregiver and volunteer. Cee looked blank at the word “dementia.” So hey, I have practice on this, and I gave Cee a very simple explanation of what dementia was. Blank. I gently pointed out that, as Cee lived with four elders in their seventies and eighties, and probably knew many others in that age group, perhaps this could be relevant, because otherwise Cee and family could mistake early stages of dementia with normal ageing, and thus miss the window where treatment was effective. Also, there are reversible dementias.

Cee was polite, and made the usual, social comments, but I did not sense any real interest or curiosity. I was a bit disappointed; to me, Cee was the profile that needed to be aware of dementia  — because of age, living with elders in high-risk age groups, and because of Cee’s social work background.  But I reminded myself that dementia is probably not appropriate party talk, and we exchanged e-mail ids and moved on to the food tables.  We sent each other emails later, and I repeated a few basics of dementia and gave links in case Cee wanted to read up more, but I got  a feeling that Cee felt that dementia was irrelevant to Cee’s personal situation, and just another sphere of social work.

At the next alumnus meet, I encountered another person (let me call this person ”Dee”). When, at introduction time, I mentioned that I was a dementia caregiver and volunteer, Dee took me aside. “Tell me, if you don’t mind,” said Dee. “What is the difference between Alzheimer’s and dementia?” Over the next hour, we nibbled at snacks as I explained things about dementia and answered Dee’s questions.

Read the full post here

Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on leave 😦

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  (ETA: The survey is now closed, and the link has therefore been removed)

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

Read the full post here