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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Of mirrors, identity, and the faces of dementia

I’ve always been bad at recognizing faces. If you have stood in a school’s lobby, peering at dozens of kids in uniform, not quite sure which of the alleged cherubs is your son, then you know the sort of problem I’ve lived with all my life. I dread to think how this problem will make things worse for me if I get dementia. And I know that for my mother, who had a similar difficulty with face recognition, this would have added to the woes of her dementia confusion.

Most people see the same face, the same person, regardless of the person’s changing expressions. But for me, each person has many faces, depending on the mood or place or what he or she is doing. This means, I have to remember so much more if I want to be able recognize someone. Other clues are not dependable either; people change their styles of clothes, their hairstyle and color, they put on weight, they lose weight….so very unfair, I tell you 😦

Decades of living with or near my mother has, however, made me confident about recognizing her face in all its moods. As I saw her slip into the confusion of dementia, I would watch her once-sharp-and-beautiful eyes look glazed, confused, even dull. I became familiar with those tiny changes in the muscles of her face that indicated the beginning of agitation; I tuned myself to preempt her agitation before it became full-blown. Her face is, to me, a collection of parts, and I know how each feature changes through her range of emotions.

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Summary post for the Jan 2011 blogfest

Having driven myself crazy trying to locate something in my own blog, I finally decided to create this summary post to give a quick reference point for all 31 posts I made this January. Here goes:

Jan 1: A new year, and this begins my month-long blog-a-day : Declaring my intent to blog through every day of January 2011

Jan 2:Day 2 and warming up to the blogging: How people, because of their ignorance about dementia, may be inadvertently hurting dementia patients and their family, and comparing awareness of dementia with other medical problems

Jan 3: Ignorance is not bliss… : Sharing memories of how persons, ignorant about dementia, have repeatedly hurt my mother by their insensitive and presumptuous remarks, and dismissed my explanations because they projected their own needs on my mother

Jan 4: Enjoying fun time with my mother : How I have found that my mother and I can enjoy many activities together, such as playing games and telling stories, even though she cannot really remember rules of games or follow a story.

Jan 5: The unexpected quality of openness : Having fun time with my mother resulted in our being relaxed with each other and her being able to open up more about her fears and problems

Jan 6: Being the Wind, being the Sun: Meandering thoughts about the years, my mistakes, my opening up, and learning. A decision to look into the past to see those mistakes and see how things could have been different if I had understood dementia earlier. The past is over for me, but others are still on that caregiving journey…

Jan 7: Pattern spotting : Explaining my belief that the tendency to fit every behavior into a rational model (that attributes intention) causes a lot of pain if the person behaving oddly has dementia; we see stubbornness and meanness where the real reason for the behavior is possibly confusion and disorientation. Sharing anecdotes that could be interpreted in alternate ways if I’d known of her dementia

Jan 8: Hints and misses : Things are always clearer in hindsight. Looking back to see how some incidents in the past (before her diagnosis) were indicative of dementia

Jan 9: Learning from our experiences : Explaining why I have decided to share, in the following blog entries, the progression of my mother’s dementia, and how it changed her life and mine.  What follows over the next few days may not be pretty.

Jan 10: Beginning to understand the reality of “memory loss” : How it started becoming obvious to me that “memory loss” was not just forgetting where you placed a key; it meant you couldn’t read TV timetables or make out whether it was morning or evening: anecdotes shared.

Jan 11: Murderers, thieves, and an old woman amidst them : My mother’s confusion and disorientation created many difficult situations for us. She was scared and unhappy, and I was hurt by her accusations and clueless on how to handle suspicions.

Jan 12: She doesn’t cook for me : Describing the difficult years of care, of being accused of neglect by my mother because she forgot things, of embarrassment I faced, and criticism

Jan 13: Hurting herself without meaning to : Incidents recalled when she exposed herself to cold weather or hot, skipped her medicines, and so on: all without wanting to hurt herself, but too confused because of her dementia

Jan 14: A common loneliness…: Looking back at those difficult years, trying to understand how lonely and insecure she must have been, how I did not understand, how I lacked ways to reach her. I, too, was overwhelmed by her constant suspiciousness and fault-finding and repetitive behavior

Jan 15: Care for everyone but a dementia patient… : Beginning to describe how I tried to adjust my life to care for her. How dementia onset is so insidious that one does not realize one is caring for a patient, and there is no guidance on how to handle it. I did not know I had embarked on a long caregiving journey…

Jan 16: Paring down to essentials : Continuing my description of how I had to keep shaping my life to cope with my mother’s continuously increasing memory loss and disorientation, and the consequent demands and accusations and insecurities. How people around me did not understand or support, and I had to keep cutting out chunks of my life

Jan 17: Reshaping career and identity : As my mother’s dementia grew, the impact started affecting even my ability to continue with professional commitments, and major adjustments were required

Jan 18: A new place, a new start : Describing the move to another city, how it was difficult for her to accept, and how I tried to gear the new apartment in the new city to exactly fit what my mother needed

Jan 19: The turning point, and becoming proactive : Sometimes, there are no simple solutions.  Describing how, when some persons close to us just would not understand dementia and kept hurting my mother by their comments, I had to take a number of drastic steps to give her a space that was safe. And how she finally started turning around and relaxing in this space I finally managed to create for her.

Jan 20: Not Alzheimer’s or Parkinson’s? Then why’s there a problem? : People are strangely reluctant to accept that someone could have a genuine problem if they have not heard of it.

Jan 21: On diagnosis, on doctors who may not know or care : Sharing my distress at how poor awareness of dementia is even within the medical community. How doctors in emergency services and in other specialties dismiss my warning that my mother has dementia.

Jan 22: Our first consultation with a specialist : Beginning a set of entries on my mother’s medical problems and our visits to neurologists. Here, I describe the fall that marked the beginning of my mother’s problems, her deterioration, and our first consultation with a specialist who was a good shrugger and explained nothing.

Jan 23: When the specialist laughed at her : Continuing the description of our attempts to find out what the problem was; this second specialist was one who wouldn’t bother to look at her MRI and who laughed at her.

Jan 24: Finally, some clarity about the diagnosis: The third specialist gives us a diagnosis, and tells us what to expect, but I could have done with more input on the “care” aspect

Jan 25: Echoes across caregivers, touching lives : I talk of my commitment to share multiple caregiver experiences through my website, and share my experiences of talking to other caregivers; there are commonalities we all share. Yet many caregivers are unable to speak of our problems, even under the cover of anonymity, and instead carry the hurt inside them for years. Links to available interviews.

Jan 26: A sense of loss : When a dementia patient loses his/ her memories, we suffer not just because we see our loved one suffering; we, too, lose our shared memories and our shared past. For spouses of patients, this is especially heartbreaking.

Jan 27: Understanding, believing, denying: On dementia awareness, and why just saying “memory loss” is not enough; people do not get a measure of the horror of dementia with that innocuous phrase. And shared anecdotal evidence of how even persons, even medical persons, who theoretically accept dementia as being caused by a medical condition are not emotionally convinced of this.

Jan 28:Over years of caregiving…: A rambling of how over a decade of caregiving has changed, or hasn’t changed me. I talk of the shifting profile of my work, my social life, my approach to life, and yet some changes are not deep enough

Jan 29:Past tense and kadhi pakodi : How someone thought my mother was dead because I often use the past tense to describe her likes and dislikes. Tracing her fondness of kadhi pakodi over the years to show what has made me inadvertently switch to the past tense. We all change over the years…

Jan 30: My mother, a collage of my memories : A nostalgic piece about my mother, her childhood, my childhood, a jumble of memories, some shifts in impressions as I re-examine things with adult eyes. Some scanned memories, some tears that make me stop writing.

Jan 31: Phew! A month-load of blogs done; time to pause to breathe and have dark chocolate : Blog marking end of 31-day blog fest and over 51,000 words, and declaring I’m off to have dark chocolate and pamper myself by doing weird stuff.

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My mother, a collage of my memories

I’ve been writing a lot about my mother as she has been these last few years. She is now bed-ridden, apparently peaceful and happy, and mostly silent, uttering a few words for an immediate need, but not articulating anything complex. But she was very active some years ago, sharp, very clear about what she thought and wanted, and today I’ll step back into the past and share more of the person she used to be before all this happened.

My mother was a very private person, for one. But she was also very particular about helping people and often went out of her way to do things for them. One thing she was very insistent about was about donating her body. At a time when she was already facing problems writing, she once heard someone say that body donation does not happen if the person has not clearly declared the intention of body donation. A couple of hours later, she handed me a paper. Here’s an excerpt:

 

My mother does not know I blog. But given the above, I think I am meeting in intent what she would have wanted.

Outside India, people understand that people who get dementia were not “lazy” or inactive, low-IQ laggards who could have avoided such a fate by being active. But in India, as I wrote some days ago, people behave as if dementia is something that touches only people who were, in some way, negligent.

No one could have called my mother lazy or low in willpower or negligent.

At a time when women barely studied and very few studied up to graduate level, my mother completed three post-graduate degrees: Psychology, Philosophy, and Education.

My mother taught in colleges and schools till she had to give it up because of my father’s frequent transfers and other such problems.

A few years ago, in a dementia daze, my mother tore off many important documents of her past, but some survived. For example, there is this thick typed document that was part of her M Ed work. It was a document she was particularly fond of, and work she felt deeply about.

When I was in school, my subjects were very different from what she’d studied. But till I reached class eight, she tried to stay abreast and teach me when needed. She had never studied geometry, but she picked it up for me. And Sanskrit.

She loved driving. Absolutely loved it. Drove much better than my father did. I remember once, when a colleague of my father had to be dropped somewhere, he somewhat hesitantly requested that my mother do the driving instead of my father 🙂

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Past tense and kadhi pakodi

A funny thing happened at one session where I was discussing dementia challenges with some caregivers.

We were all talking of problems typically found, and I was sharing some anecdotes of mine, some mistakes, some solutions. There was one gentleman caregiver who was in a bad state, desperate for solutions of how to handle his father. He was sharing his problems and listening to what others were saying, making notes.

At that moment, someone who knew me well asked me about how my mother was doing, and as I began describing, this gentleman interrupted me with a shocked expression.

“Wait,” he said, “you mean she’s still alive?”
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Over years of caregiving…

Time for self-centeredness. Today is about I, me, myself…

I’ve often written about how I have tried to care for my mother, made mistakes at times, succeeded at times, made changes in my attitudes and in the environment around her and so on. I’ve talked about my involvement in dementia awareness and helping caregivers and all that.

Today, I’m talking about how (and if) these last several years have changed me. I’m looking back at the journey I started without knowing twelve years ago, then began resenting because it was a can’t-get-off-this-ride journey, and have finally slumped comfortably into (for the time being).
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Being the Wind, being the Sun

I read a story long ago of the Sun and the Wind arguing about who is more powerful.

Then they spot this man walking on a road below, wearing a cape, and decided that whichever of them could make the man take off his cape was the more powerful one. Wind took the first turn, and blew a gale hard on the man, hoping to force the cape off him. The man only drew it close around him, gripping tightly like his life depended on it. The harder the Wind tried, the tighter the man clung to his cape. Then the Sun took his turn, and shone gently on the man, and the man relaxed and took off his cape.

Of course, the story doesn’t make all that much sense if we factor in that the Wind did the only thing it could, and so did the Sun. But I always think of this story when I remember my years of caregiving for my mother.
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Preparing for the caregiving role

As a caregiver, the most unpleasant phase for me was when I acted as a functional caregiver.  I tried my best to do things right, but had not grasped the full impact of the disease on my mother’s personality and behavior, and didn’t know how to avert or handle challenging behaviors. I used  ‘common sense’ and rationality, and when they failed, I got frustrated, irritated, angry, exhausted, or just depressed. Those emotions didn’t help, either. 😦

I was stressed, and struggling to keep a normal life running so that this stressful activity did not swallow me up.

The switch happened when I sat down to review my life and saw how all-pervading the impact of my caregiving role was. My social life had vanished, my circle of friends pruned down significantly. I had been forced to adjust my career direction and intensity dramatically. My mindset had changed, my emotional and intellectual mind-share had changed.
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shifting roles in caregiving

This month is a month of introspection for me as I look back at the years I have been caregiving.  Like most caregivers I made mistakes, got overwhelmed and exhausted. I won’t even try to count the number of times I was angry (not just irritated or frustrated), unable to handle ‘difficult behavior.’

One interesting thing I notice in hindsight is that there were distinct phases in my caregiving role, and that as I progressed along these, caregiving became more meaningful and fulfilling, and less irritating and exhausting.

To begin with, I did not even think I was, or would become, a caregiver. Perhaps I can call that phase as absent caregiver 🙂 This was when my mother’s behavior showed anomalies and caused problems, but I thought they were because she was getting old (all old people have memory problems, don’t they?), or felt she was being uncooperative, egoistic, and stubborn. The doctors had mentioned atrophy and ataxia, and I did not understand (or want to understand) the impact on her ability to do things. Her strange acts were sometimes amusing, sometimes an embarrassment or an inconvenience (sometimes severe). I kept my distance, coped with it, and planned no further.
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stages of dementia

The progression of dementia is often understood and explained using ‘stages of dementia’.

Often, in its early stages, dementia is so much like normal aging that it is indistinguishable and often under-diagnosed. As dementia progresses, the differences between dementia and normal aging start becoming prominent. Often, at least in India, it remains under-diagnosed, and families just assume the elder is being stubborn and troublesome (which is why we need more dementia awareness programs). Then, as the situation worsens, families start realizing that this particular elder needs something different, something special. Doctors are consulted, diagnoses obtained, and treatment started as appropriate. Behavior at this point often includes stuff that harms the patient or others around him/ her, and gets tricky to handle. Often, even at this stage, non-pharmacological approaches are not considered, and it is assumed that only medicines can be used to manage challenging behavior.Then, dementia progresses to a point where the dependence is obvious, the disease is obvious, and the patient needs full-time caregiving.

The stages of dementia are often defined in terms of the decline in the functional abilities of the patient. A description of the seven stages can be seen at alz.organd at the Alzheimer’s Reading Room.

Essentially, the stages are:
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thumbs down

My mother holds three Masters degrees (Education, Philosophy, and Psychology).  Being highly educated has been, to her, a very important part of her personality. She considered anyone uneducated as less intelligent and just…less of a person.

When she saw someone use a thumbprint instead of sign a document/ cheque, she would wrinkle her nose. Being an अंगूठा छाप (one who needs a thumbprint for a signature), was, to her, the ultimate insult.

Things have changed now. She cannot sign any more, not even hold a pen correctly. She does not remember her name, or remember what writing is.Today, with great hesitation, we needed her thumbprint on a life certificate that the authorities require. I was dreading her reaction  —  but she did not seem to register what was happening as the doctor (with an expertise that shows this problem is common enough) pressed her thumb on an ink-pad and took its impression.

I don’t know whether to feel relieved that she did not mind, or to feel that her not minding is yet another tragedy of her situation…

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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there and yet not there

Nowadays, my mother sleeps for most of the day, and the rest of the time, she looks sleepy. I have tried holding her hand and talking to her, she smiles lazily, sometimes utters a word or phrase, and then closes her eyes.  If I ask her whether she is sleepy, she nods her head.

This is not a sudden change, but it took me a while to register this new ‘default’ state. I realized yesterday that we had not played games with her for a number of days, because whenever I suggest a ‘game’, she shakes her head. I have managed to make her count my fingers, or identify colors and objects, but even that seems to tire her, and so I have to stop after a short while.

A year ago, she would do small jigsaws, place rings on a rod, and play games where  she recognized or matched colored pictures. She saw albums and commented on them. We used picture charts. She even read a few phrases from a large-print Panchatantra book.  She could read aloud letters from her grandson (written in simple sentences, printed out in large font). She practiced her signature every day, and sometimes managed it almost correctly.
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love, without the trapping of a gift

A very interesting part of sharing experiences through blogging is that I get to connect with other caregivers, many of whom I would never have met otherwise.  On one of my recent blog posts, for example, I got a comment from Lori, who blogs about her own experiences as a caregiver at Alzheimer’s Speaks, and, while going through that blog, I found my way to a few other interesting blogs, such as the blog of Laura Bramly, ElderCareTalk.  They have recently been sharing their perspective on giving gifts for dementia patients.

Reading their blogs made me think of how my own gift-giving habits have changed over the years, with respect to my mother.

When I was young and in school, I would save my pocket money to buy a gift for my mother’s birthday. The gift was always a cotton sari that I would choose myself, and often it cost me the pocket-money of two or three months. I used to feel very great when she wore the sari I had presented to her (and told people that the sari was a gift from her daughter).

Once I began earning, and was living away from home, the occasion for the gift-giving became my visits home. It was still saris, sometimes more than one, handpicked to match her tastes. But sometimes, instead of a sari, I would buy her an embroidered shawl, or a special type of handbag.
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dependence

When my mother  was younger, she was fierce about her independence. She always said she would never become dependent on anyone, that she would rather die.

Then, as she became older and her physical and mental abilities reduced, her definition of what was ‘dependent’ kept shifting, always remaining slightly beyond where she currently was.

In my mother’s case, her dementia compromised her ability to understand the progressive nature of her problem and the inevitable growth in her dependence; it is hurtful to see that a person who valued independence so much can do nothing about her state, and understand nothing.

But thinking of her earlier determination not to become dependent, I cannot help wondering why the idea of dependence is so unacceptable to most people.

I think it is easier to say you will never become dependent or inconvenience people in the phase of life when you are independent. When I think of it, I cannot remember even a single person who, while dependent, remembers and acts upon this need to ‘not depend’.

I also think this concept of ‘never being dependent’ is often more about ego and sounding correct. It is wrong to inconvenience others; so, saying you “would rather die” sounds correct and possibly a bit heroic.

Why do people say they do not want to become dependent? Is it out of consideration for the potential caregiver, or is it ego, or both? I think it is very difficult to accept help gracefully, and it may be easier to refuse help (or ignore the help you are getting) than to accept it in a way that is fulfilling to both the giver and the receiver. I often think of the book, Tuesdays with Morrie, as an example of how people can ask for help and receive it with dignity.

Here’s a thought: most of us, if we don’t die in accidents or of a heart-attack, will end up in a dependent state for at least some time. It makes sense to be emotionally ready to accept this gracefully when it does happen–though we may try our best not to reach that state.

Consider an old man, determined to remain independent, frustrated and angry at an illness that makes him bed-bound, always talking of how he hates this dependence, and trying to sabotage his recovery process by getting up to do things (against medical advice), because dependence is abhorrent to him. People around him are equally irritated, and everyone is always frowning. There are no thank-yous, no smiles, only one man proving he does not want to ‘inconvenience’ people, and others arguing with him to accept that he cannot do anything himself.

Contrast this to someone who accepts that her current state makes her dependent, is ready with smiles and kind words to her caregivers, and asks for help in a simple, direct way. People around her may be tired, but they feel valued for what they do, and often find themselves smiling back at the patient.

Which patient would you rather caregive for? And which patient would you rather be?

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A new phase of caregiving: a bedridden mother

I find myself strangely shy as I try to act out on my intention to blog every day through this month; as part of my attempt, I am wondering how I managed it last year, and I am surprised to find how very different my life is now.

My overriding mindshare, both last year and now, is caregiving, but the texture has changed completely.

Last year, I was busy accepting that dementia had altered my mother’s way of talking and responding, and that the changes in her memory and abilities (and the frustration they caused) were the main reason her behavior required a new paradigm of interaction. My focus was two-fold:  one, creating a method of interacting that took her reality into account; two, introducing whatever was possible in her days to stimulate her mentally within the bounds of her abilities, while making sure she had enough ‘successes’ to enthuse her to keep doing her best.

Over the year, on the plus side, we found that the behavior problems most caregivers face (and that I faced earlier), vanished and everyone was, consequently, more content and less stressed.

However, dementia is a progressive disease without a cure, and progress it will, whatever you do. The pace may vary, and the specific of the sequence of deterioration may vary, but the direction is the same: downhill.

And so, by the end of the year, my mother reached a completely bed-ridden state. She barely talks, and while we are trying to see whether any medical/ nursing approach can help, the overall thrust of caregiving has changed. While earlier, too, we were focused on making sure she is comfortable and feels secure and loved, this is now a major part of the approach. That, and trying to ensure we understand every clue about what she wants or whether she is in any discomfort.

For example, while feeding her (food has to be spooned in her mouth), we have to make sure she is swallowing it properly, and sense whether she wants to eat more or not (check facial expression, check burps, check that turning away of the face or the opening of the mouth).  She does not tell us when she is cold, thirsty, or in pain — again, body language is all we have.  She sometimes nods or shakes her head if asked very simple questions, but most of the time, she looks somewhat blank. For bulk of the day, she sleeps.

Yet, despite this significant deterioration, this extreme helplessness, she responds to affection, and is is both easy and fulfilling to given her the emotional company she wants. Sometimes I find myself just holding her hand, not speaking, for several minutes, without thinking (as I would have earlier, and as an observer may feel) that I am ‘wasting’ my time. She cannot eat her food herself, but when I put my hand in hers, she grasps it back with a strong grip and sometimes even pulls my hand to touch her lips, as if for a kiss.

I have not fully re-adjusted to this new phase of her dementia, but it is not as difficult as I thought it would be. Possibly, she is being productive in a meaningful way, because all of us around her find ourselves more able to give and accept love, at least while we are with her.

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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