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…

What is really important for people to learn or be reminded of on this day by this few column-inches spared for Alzheimer’s and other dementias every year? What is relevant, what is essential, and how can it be conveyed so that it sticks?

For example, should readers know about policy (or lack thereof), and how the government should spend more money on dementia care? Will the readers get involved enough to lobby with policy makers? Perhaps excerpts of a report will tempt them to read the full report? Are they interested enough to invest that time?

Or instead, should people know about the celebrity chief guest at an event held, see a few photographs to get interested? Perhaps the information accompanying the photograph is useful. Which brings us to the question:  how does a reader know this information is useful, if they know very little or nothing about dementia?

Or should that scarce space available be used to describe the symptoms of dementia? So boring, really, one does not quite read through serious stuff like that, does one?

What about caregiver stories? Those ones that are the same year after year, with a few names carrying over, a few changing.  Do they fascinate? Horrify? Titillate? Enough to find out more, and understand?  Or is dementia care something that happens to “others”, never to “us, the readers”?

I guess fitting an entire cause into a few column-inches once a year is quite as difficult as fitting the caregiving experiences of over a decade of caregiving into a single, 50 word advice.

I mean, one can do it, but can one do justice to it?

A confession: I am a fickle reader. Very little holds my attention when I am reading newspapers. I glance, quickly conclude whether something is of interest (and usually it is not), skip to the next article. Preachy articles don’t interest me, photographs don’t hold me unless I know the person or place (and I am so bad at recognizing people anyway), and as for policy, well, I’m no policy maker.  The comic strip is where I pause, or the sudoku. No messages there. I’m not a good target audience.

What does this mean to me, given my concern about dementia?

Why, for example, would anyone bother to read an article on dementia? I suspect the only persons who read such articles are those who already know at least a bit about it. Or the gaze will slip past, unnoticing. A catchy heading may help…but only enough  to read the next couple of sentences. Memory loss is catchy, because we all keep forgetting names and keys and items on our shopping list, and some of us forget a bit more and don’t find it easy to mention it, let alone joke about it.

I’ve been thinking about such sundries, and this is where I currently am:

Given that one has limited space, and must therefore prioritize, I don’t think it is all that important for people to know the details about why dementia happens, about that stuff of plaques and neurotransmitters. (How many people who are concerned about diabetes know about the pancreas?) I don’t think the overall numbers have such an impact on a reader. We are remarkably smug about low percentages anyway, especially when they are related to a disease we do not know much about.

 Given the limited coverage, I think we would be best off if we use that space to reinforce the relevance,  the immediacy of dementia, and how it may impact the reader, the reader’s immediate family, and the first step to take in case one suspects it.

Not, mind you, by being alarmist, but by being realistic. Factual. Because the facts are damning enough.

Everyone wants to grow old (because no one wants to die before that). So everyone has some interest in knowing what is normal with age, and what is not, so that one can try to get problems treated. I don’t think anyone wants to suffer unnecessarily. I don’t think anyone wants a family member to suffer. Or others to suffer. We all have a stake in healthy and happy ageing. Our own ageing, and the ageing of our elders (because their lives impact ours in multiple ways).  This is a perspective worth considering when presenting the impact of dementia.

There are lots of medical conditions we don’t know about. We cannot. We should not need to. We need to know only enough to figure out whether something happening to us requires our consulting a doctor, and what sort of doctor to reach out to for which problem. If our vision is clouding, we go to an eye doctor. If our knee is giving problems, we go to an orthopedist.  

And when we find our problems increasing with short-term memory, find familiar tasks becoming strangely difficult, find numbers suddenly seeming like strange squiggles and words failing and time and space getting mixed up, find ourselves placing things in weird places, when our inability to do things drives us into seclusion and we begin avoiding people and social activities, getting moody…or when we experience  these or other symptoms we remember that there is something like that called dementia, and think of consulting a specialist, like a neurologist or a psychiatrist or doctors conducting a memory clinic. Some causes of the symptoms are treatable, so it is well worth it to consult a doctor.

And we should know enough about dementia to tell someone else facing such problems where they or their family members can go for help.

According to me, that is all that people need to know for starters. The rest is important, but we will find it interesting only after we realize that this dementia stuff is not something “others” have, it is something that could be quite close to us, which we could mistake as old age. That a lot of conflict and suffering can end if we know this.

(I have seen families split because of misunderstandings caused when patients with dementia said something and everyone assumed it to be fact)

I still don’t know what sort of presentation and packaging would make such basic dementia information understandable for people without adding to their information overload and without boring them or frightening them.

(Because we don’t need to make people worry more; most people have more than enough worries in their lives)

Any ideas?

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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

  1. Rummuser says:

    What would be our benchmark? The West? More information on the net, press, TV programmes etc, but I have friends over there with exactly the same problems that we face here, not enough awareness of the disease in the general public, relatives and neighbours; and as care givers, having to live with shame, vulnerability and guilt. I am afraid that the only idea that I can come up with is that we continue to educate whenever and wherever we can and manage our lives and our wards to the best of our ability. For moral and emotional support, we have started off this great adventure online in India and it should help.

    • swapnawrites says:

      Thanks for writing in. Yes, I think education is key because things are easier to cope with when one understands them. The challenge is, how to motivate people to know the minimum necessary, and what that minimum is…

  2. nishi says:

    dear swapna
    I went through your blog with great interest.jispe beethati hai wahi janta hai….a lay man would just blink if i were to mention dementia.oflate more people are becoming Aware of ths condition.for that matter many other conditions which affect elderly people are still not known to people who have not come across such conditions.Swapna i strongly feel more people Should come forward in supporting such causes.More pamphelets should be distributed,more hoardings to be put up in prominent places highlighting about this condition so that people are aware that one day ot might affect them too.Do you maintain a list of such patients?if yes kindly pass it on to me.I would love to help you in any manner.I want care givers to be recognised for their selfless services.Please feel free to talk to me.
    Regards
    Nishi.

  3. kalpana malani says:

    Swapna – the most dramatic and devastating fact ( according to me) about dementia are the statistics mentioned in your site – 37 lakh dementia cases and respite / daycare facilities for only 400 of them. Maybe a comparitive table for other diseases could help.

    • swapnawrites says:

      Those dementia stats of prevalence versus facilities are totally frightening, yes. I’m looking for comparative stats of other diseases. If you have any sources for that, or any further elaboration on what sort of presentation of data would help, please do share it with me.

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