Understanding, believing, denying

Because of my concern about dementia awareness in India, I participate whenever I can in awareness programs, talking to people about dementia and caregiving.   The Dementia India Report 2010 says, “Awareness of dementia in India is low.” I see this as a polite understatement in a country where people usually fail to recognize dementia as a medical problem because they see the symptoms as either normal old age, or a mental problem (read: madness). Many (most?) doctors are not alert about dementia.

Awareness of anything, as I understand, needs both information and belief.

Usually, when we explain dementia, the focus is on disseminating information (and maybe case studies/ stories/ incidents), assuming that people exposed to the facts will believe them. But sometimes, even after hearing or reading about dementia, people don’t register what it is.  Information percolates only if people are willing to believe it, and many things come in the way of believing that dementia symptoms are caused by medical problems.

Frankly, I’m not sure any longer whether the focus should be heavily on medical information; I think we need to focus on just a few things that are easy to understand and believe and remember.

Let me share some of my attempts at explaining dementia, and why I’m now examining this angle…

In the last two months, I had the opportunity to talk about dementia to senior citizens at senior citizen clubs (upper middle class, all educated, many retired from responsible positions).

I thought it would be interesting to use an example of a well-known medical problem like diabetes to see how awareness of dementia compared with it. So I  asked the folks whether they’d heard of diabetes. Of course they had. I asked for what it was. “The patients cannot have sweets,” I was told. “They need to take medicine.” “Some take insulin injections.” “They take their tea without sugar” And that was all I got without prompting.

It was only after prompting repeatedly that a few people mentioned “kidney problems” or “someone I knew had a leg amputated” type of couple of comments.

When I asked people whether they knew the medical reason why diabetes happened (in terms of what went wrong in the body) no one said anything. Perhaps a few knew, but felt shy.

Now, diabetes is very common around all of us. I’ve heard that India is a diabetes capital of the world. We apparently have (or will have, given the trends) more diabetics in India than any other country. Reaching such dubious distinction is helped, I suppose, by the fact that we have more people than almost all other countries 🙂 Of course, some reports say it is China now (they’ve apparently overtaken us), but whatever, we are close to the top…

Point is, we all know someone with diabetes, and often several people with it. We meet diabetics in our offices, in our clubs, and many of us have diabetic relatives. Or we ourselves have diabetes. Diabetes affects the very lives of the patients and the families in multiple ways, and not just withholding sugar from tea.

In this dementia awareness discussion, I had picked diabetes as an example of a disease I expected everyone to have heard of (they had) and understand well enough, and was surprised that diabetes was tokenized as “insulin” and “tea without sugar” in the minds of many people.

I didn’t fare much better when I quizzed people about hypertension, either 😦  There it was “low salt” that was the prominent token.

I was not talking to hip youngsters who could say, that’s not going to affect me for years, why bother. These were senior citizens, an age when they or their friends had these conditions, and at every medical checkup, their doctors were checking for these conditions. These persons were educated, articulate, well-to-do.

This experience made me wonder how one can go around explaining dementia in such a case. What token would dementia have, comparable to “sugarless tea” and “insulin injections” and “can’t eat sweets” of diabetics or “less salt” of hypertension.

It occurred to me as I was talking to these people, that we rarely remember details of things we don’t expect to matter to us (or things we want to remain in denial of).

When I asked about dementia and people said, “they have memory loss”, that level of awareness didn’t seem so bad, really 🙂 It seemed as apt a mnemonic as that of the other medical conditions I’d asked about. It is definitely correct.

But there is a difference.

For a diabetic, people around mostly need to know diet restrictions and how to handle emergencies. But for a dementia patient, people around need to understand the extent to which memory loss affects orientation, ability to do things, and moods and so on. Unfortunately, the phrase “memory loss” is reduced in most minds to losing keys or spectacles, a professor style of absentmindedness; the horror of memory loss, dementia style,  is missing.

We need a more catchy, more appropriate phrase or image that conveys the horror of the situation but in a way that doesn’t push people into denial either.

Then there’s another question: if everyone is, by the large, ignorant about diseases, why does dementia awareness matter?

Because what is missing is not information on what dementia is, but the belief that it is a genuine medical problem. In most other illnesses, we may not know the details of the problem, but we do believe when told that someone is suffering from a dissease.

The challenge of awareness of dementia is that even with full access to information, most people don’t believe it to be caused by a medial problem that occurs for unknown reasons. They think it is carelessness of some sort.

Here’s an episode that brought this home to me in a shocking way.

I once overheard between two doctors, both doctors who dealt with dementia patients. One doctor (Doctor A) had forgotten something, and this was noticed by Doctor B. The conversation was short, and obviously not something I’d been intended to overhear, and it went something like this:

Doctor B (laughing): You’ve been forgetting things. Maybe you are getting dementia.

Doctor A (laughing even more loudly): Me? I’ll never get dementia! What do you think I am!!

I sidled away before I ended up saying something.  I understand that people need gallows humor sometimes, to survive–especially doctors, given their continual stress of coping with illness.  I’ve done enough systems studies in hospitals and been exposed to plenty of that from a range of doctors. But this did not sound like gallows humor to me. This sounded to me like Doctor A believed dementia was something people got or did not get depending on what they were or did. Like people who got dementia were in some way careless or stupid or whatever.  Like they could, if they chose to do so, avoid dementia. These doctors may describe dementia accurately in conferences, but in their hearts, they have a judgment about it. Against people who get it. Or maybe a denial to cover a fear.

I tried to imagine a corresponding conversation on a disease like, say cancer. For example, if Doctor A had had just palpated a breast lump, can you imagine:

Doctor B (laughing). You’ve got lumps in your breast. Maybe you are getting cancer.

Doctor A (laughing even louder): Me? I’ll never get cancer! What do you think I am!!

This would be downright labelled as poor taste, right?

On the other hand, I can imagine people joking like that about diabetes, which people (who do not have it) often consider a lifestyle disease brought on by the inaction/ carelessness of the patient, and therefore, in spite of being a very common problem, people who do not (as yet) have it sometimes act judgmental about those who do.

Apparently, even in the medical community, some doctors do not believe that “dementia” is a group of symptoms that occurs due to multiple causes that are not yet understood, and for which prevention is not yet known.

Deep-rooted beliefs as well as fears come in the way of our accepting the information we get. Here are some I’ve seen about dementia:

  • Memory loss is inevitable with age (It is not, the extent varies, and many causes of memory loss are treatable, so it helps to consult doctors)
  • People get more stubborn with age (Really? Maybe some of them are facing problems they cannot articulate?)
  • People who act oddly are “mental” (Dementia is not the same as being mad. Anyway, this also represents an unfortunately judgmental view of “mental”, a topic by itself)
  • Maybe it is infectious (no, it is not)
  • Should not marry someone in a family with such problems. Those people are mad (no no no)
  • There’s nothing that doing two sudokus every day won’t solve. People having memory problems have just let themselves go (Margaret Thacher and Ronald Reagan and Agatha Christie and Iris Murdoch and Terry Pratchett weren’t exactly sleeping through their days and nights, were they?)
  • If someone has genuine problems with remembering what she ate, how can she remember her childhood? (but there is short term memory, and long term memory)
  • Having such problems is a matter of shame for the family (shame is what we make it to be)

I think we must attack “shame” first. And that feeling of inevitability of dementia type of symptoms with “age”, because those are the biggest blocks for listening. If dementia is seen as being crazy, or as something only stupid people or lazy people or careless people get, why would anyone admit to memory problems early enough? If it is seen as inevitable with ageing, why would the family seek help? And how much respect would the medical professionals show?

A few weeks ago, I urged a friend to read up some pages explaining dementia I’d put up on my Dementia Care Notes site, because I often try to alert anyone I meet so that dementia is detected faster. She wrote back saying that she’d not known that memory loss may have treatments, and is not always an irreversible problem tied to ageing. She’d be careful about it now, if she saw it in her parents or others.

People won’t have to suffer so much if only we open our hearts to understand the range of what happens, and create an environment that supports everyone facing problems.

Today it is someone else who needs our understanding and support, and our belief that his/ her problem is genuine….tomorrow, we may be the one who needs that support…

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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.

One Response to Understanding, believing, denying

  1. thoughtraker says:

    Have been reading the daily posts, and it has been a very educative and emotional journey. I cannot find the right words to express what I feel and think when I read them; just grateful that you shared them.

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