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.

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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 behaviour, possibility of early onset, possibility of initial symptoms other than memory loss, increased dependence and reduced mobility in later stages, 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 of later stages, like persons not being able to do even simple tasks, incontinence, inability to swallow, becoming bedridden, 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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Living with Dementia, awareness, images, stigma, quality of life: a perspective from India

Every September, those of us whose lives have been changed by dementia find ourselves introspecting about the environment around persons with dementia and their caregivers. We find ourselves building up hopes that in future, the dementia and care situation will have more dignity, an improved quality of life, and more support. Years of being the main caregiver for my mother has made me deeply concerned about dementia awareness and care in India, and I, too, ponder on these issues.

A few weeks ago, I saw a report that discussed how many existing “frames” used to depict dementia are negative/ unproductive and how alternate frames should be used to depict a positive picture and convey the nuances. Then, as I was still piecing together my thoughts on the matter, I realized that the theme for World Alzheimer’s Month 2012 is “Living together”. Alzheimer’s Disease International also plans to release a report on the stigma aspect. I look forward to seeing that report.

(BTW, for those who unsure of the relationship between dementia and Alzheimer’s : dementia is the name given to a group of symptoms, and Alzheimer’s Disease (AD) is the most common–but not the only–disease that causes dementia. Most dementia-related work is done under the Alzheimer’s umbrella by associations with names that include the word Alzheimer’s (but may not include the word dementia), a nomenclature that sometimes confuses and ends up excluding those non-AD dementia caregivers who assume the material/ advice will be AD specific 😦 )

Meanwhile, I’d like to share have some thoughts, mainly on how dementia/ care experiences are influenced by the culture and images around dementia, how countries differ, and some lessons for the concerned persons, especially my peers in India. These are just my personal thoughts, not an expert opinion nor a “report” based on any “study”…

…and I’d love to hear your thoughts, too.

I see persons with dementia as major stakeholders in any dementia-related strategy. We already have millions of persons with dementia who try to navigate their lives in spite of the disadvantages dementia imposes, and we have millions of caregivers who try to understand and support them (but don’t always manage to). Medicines and research are also important, of course, and must go on in parallel, but medical research cannot be the sole focus. A world without dementia is pretty far off, because hey, we have millions with dementia already here amidst us, right? Also, current medications are few, not applicable for many diseases that cause dementia. These treatments work on some persons but not others, have side-effects for some persons, and do not reverse dementia. It will take years of intense and sustained research to create enough effective and safe cures adequately tested on humans.

In the meantime, many people continue to “Live with Dementia”.

So I really like this year’s theme: Living with dementia. I like the fact that it focuses on people, on their situation and surroundings, and shows sensitivity to the discrimination and stigmas they may be facing. Living with dementia seems like a wholesome focus. Not struggling with dementia, trying to “defeat” it, or “surrendering” to it or “giving up” or being seen as “negative” or “lacking faith.” Instead, accepting what is there, working with what can be done, focusing on improving quality of life, retaining connections, leading enriched lives to the maximum possible extent.

Dementia care cannot depend just on medical support. It cannot even depend solely on the institutional infrastructure available; most of dementia care occurs in home settings. The care therefore depends a lot on the environment around it: the combination of images and stories around dementia, such as how society perceives the symptoms, the conventions for interacting with people showing such symptoms, the available body of caregiving knowledge, perception of the role of doctors and medication, and so on. Published caregiver manuals and guidelines are only a fraction of the environment around dementia care; the overall environment combines multiple factors like culture and religion, information available in articles, credibility of sources, newspaper depictions, depictions in fiction, mythology and movies, the history, and the societal conventions of how elders and people behaving strangely and differently are treated.

Oh, and also on whether that society even acknowledges such persons openly or whether it expects families to hide them away 😦

Let’s consider the dementia journey, which typically spans years, even a decade or two.

Read the full post here