Poor awareness and the danger of very few representations

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

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

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

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

Over the years, replacing these with more balanced mental representations had taken effort, and I have found such replacement easier for cases where my base of known-persons-with-condition is higher. I know now that cancer is of many types and detected in many stages and that there are treatments with various efficacies and side-effects and trade-offs and remissions and relapses. The license taken by movie script writers were for dramatic purposes, because those were movies, not documentaries explaining cancer. I know this because I have read more, heard about many more patients, and thought more. On the other hand, I still know very little about mental problems (because the condition is kept under wraps and I don’t know anything other than what I’ve gathered from a few articles). And I have no confidence at all that that I know how zamindari works at the ground level, since I am never sure of the veracity of my information sources.

Or take another example. If I know only two persons from a region and both are taller than six feet, then I will end up assuming that everyone from that region is tall, even if I logically know that is not necessarily true. We assume our real-life sample size to be representative, howsoever small that sample is.

So if the only case of dementia we know was one where there was a brain tumor and a consequent headache, we may assume that brain tumors are a typical problem seen alongside dementia… (which, BTW is not true)

Or if the only person I know with dementia was a lady who was mild and withdrawn and sweet and cooperative and where the caregiver was affectionate and handling the patient well, I may assume that any person who says their patient is aggressive or difficult must be a bad caregiver and is therefore facing problems. But if the only person I know with dementia is one who flings shit out of the window without provocation, then I may assume that is the norm.

The fact is, the smaller the sample size, the larger is the chance that the chosen examples will be from the extremes.

The depiction of disease in movies intrigues me. The story-teller is not creating a movie as an authoritative documentary on the topic. To be sure, they are obliged to do some research, but beyond that, they will choose a plausible deviation that lends itself to an impressive drama and will grip the viewer emotionally. The chosen storyline may therefore barely skim the realms of the possible rather than be close to the norm; yet, when we know very little about a condition, we may consider the movie to be a depiction of the average patient even though the movie makes no such claims.

There are five Indian movies that I know of that depict dementia; these are: U, Me aur Hum (Hindi, Kajol), Black (Hindi, Amitabh Bachhan), Thanmatra (Malayalam with English subtitles, Mohan Lal) Maine Gandhi Ko Nahin Maara (Hindi, Anupam Kher), and Dhoosar (Marathi, directed by Amol Palekar, not yet available as DVD as far as I know).

I have seen the first four of these, and they are each quite unique in what they depict, and they also differ in how the story builds in the dramatic elements alongside the dementia depiction.

The Kajol movie, for example, really stretched my credulity and I would not recommend it to anyone who wants any idea of dementia (which is not the same as saying it could never happen, only that it seems so unlikely that it should not be part of a small sample size and should not be used to inform people about what dementia is). In fact, I don’t know a single person whose life has been touched with dementia who considers this movie a good depiction.

On the other hand, Thanmatra was created with the input of some doctors from Alzheimer’s associations and is a sensitive portrayal, but even so, I read an interview about how some doctors felt the movie had not depicted the majority situation (it depicted early onset, not late onset) and that the deterioration-over-time-frame aspect should been shown in more detail, and the director said (quite rightly): “This is not a documentary, so I am allowed to take certain liberties.”🙂

I’ll probably get around to blogging about my own comments on each of these sometime or the other…

…but meanwhile, I’d say, if you want to understand dementia and care, don’t assume that the one or two cases you know are representative🙂

…and if you are someone concerned about spreading awareness, help gather more stories, give people a broader base of experiences…

Edited in May 2013 to add: I’ve finally written out my detailed comments on five Indian movies that depict dementia and how (in my opinion) they are/ are not suitable for understanding dementia and its impact on the person and family. Click here to read: Indian Movies Depicting Dementia: Some Commments.
Edited in Dec 2013 to add: Another related post is here: Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia.

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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.

3 Responses to Poor awareness and the danger of very few representations

  1. austere says:

    Dhoosar is awesome. Must watch.
    Not an easy movie to see.

  2. Pingback: Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia | Swapna writes...

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