thought experiments and dementia-related priorities

In a rather interesting presentation I attended in September 2008,  Dr. Ali Khwaja of Banjara Academy (Bangalore) asked a roomful of persons associated with dementia caregiving: how many of you believe you will get dementia? Picture a roomful of people, sixty or more. Only two persons raised their hands.

The percentages are not quite that way, folks🙂 . The 2009 report on dementia facts and figures (USA) gives Alzheimer’s as the sixth leading cause of death, and the major risk factor is age. According to American statistics (see 2009 report from alz.org (PDF file)at www.alz.org) Of the current population in USA that is 71+ in age, around 11% men and around 16% women suffer from dementia (there are more women because they live longer). It is estimated that more than 20 percent of women reaching the age of 65 would ultimately develop dementia (estimated lifetime risk), compared to approximately 17 percent of men.

So, in response to Dr. Khwaja’s question, unless bulk of the room occupants intended to die off before (which I suspect they didn’t), many more hands should have been raised.

Denial? Yes, dementia is serious but I won’t get it. Yeah, that’s the way we think of anything unpleasant. (Like death, which, incidentally, has a hit rate of 100%)

This denial, this distancing, explains why we don’t really get the degree of clarity and obsession about acting to improve things. Or the will. We know the facts, but we don’t think they apply to us. We pretend we are being very positive, a politically correct garb for denial, avoidance, whatever.

Ten years ago, when an elderly lady we knew was facing problems (that, in hindsight, seem dementia), my mother was very clear about her future. That will not happen to me, she declared. I will never become like that. I wonder how she would have re-arranged her life, her attitudes, her relationships with family had she known she was headed the same way.

Of course, what many people (who are yet to get dementia) forget is that persons who get dementia did not choose to do so. There is no sure method known to evade it. Healthy habits may reduce the chances, but don’t “prevent” dementia. And while diagnosis of mild cognitive impairment helps, and memory loss detected early enough can lead to interventions that can help delay the onset of sever symptoms, there is no certain cure or prevention.  Studies, hopefully, will some day give us answers (reassurances) we need and action plans we can follow, but till then we must contend with the fact that dementia can hit us just as it hit our neighbor. Or Margaret Thatcher. Will power or garlic cloves will not stave it off. It is not silly, weak, crazy people who get it;  it is anyone.

So, here’s a thought.

Suppose God (or a time machine, if you are an atheist) confirms to you that you will get dementia in one year, that you will live in that state for four years, deteriorating to complete helplessness, and that opting out (dying) is not an option. You have one year to do whatever you can do make your post-dementia-onset life as meaningful/ comfortable, whatever, as you can. What would you do? What would you want people around you to do: activists, doctors, researchers, family?

Perhaps one year is far away. Maybe your creative juices stir more into action if you think of dementia looming on your horizon six months from now.  Four?

Given imminent onset, given personal impact, you are more likely to see things from a different point of view. Yours. The potential sufferer’s. Or maybe you can repeat this thought experiment assuming the sword dangling over your head is of being sucked in, full-time, into caregiving a dementia patient (and you have been shown films of how much of a 36-hour job it is).

Okay, so if I knew I was about to get dementia, what would I like done by others?

  • I would want everyone to understand enough about what I am about to suffer from, so that they can provide for me, empathize, arrange their lives to do what is needed without feeling hassled or giving up their own joys.
  • I would want to continue to be respected and loved, even if I cannot remember things and act difficult. I would want people I may snap at, accuse, or hit, to remember that this is the disease, not me, that is being difficult
  • I would want systems around us to make it simple to care for me. Doctors, hospitals, nurses should know the limitations of dementia patients, and their ability to harm themselves. Trained attendants should be available. Old age homes that cater to people like me  should be available.

And what would I do in that one year?

  • I would ensure that everyone I love and care for and value knows that before it is too late for me to tell them.
  • I would educate myself on the disease, on its impact on me and others, and on the type of decisions that may need to be taken for me, and discuss these with all who may be impacted.
  • I would like to put together enough on myself so that someone trying to talk to me knows what may help, and what may trigger a reaction. If I have not shared enough of my childhood memories (which is what I may sometimes revert to) I will capture them in easy ways to refer to.
  • I would set my affairs in order and discuss clearly what my end-of-life wishes are, and what my will is, so there is no misunderstanding on these. I would discuss these with family to make sure that what I evolve is something that respects the needs of all.
  • I would like to resolve all conflict inside me and go into this unmapped, terrible terrain as clean as possible, so I know, and those around me know, that anything that hurts is not coming from something nasty/ intrinsic that was hidden inside me but is happening because of the organic changes to the brain thanks to some disease. Perhaps I would attend a spiritual retreat and get that peace inside me. Perhaps I will build a habit of daily meditation (something I keep hoping to do, anwyway).
  • And I would participate as actively as possible in whatever I can do, to create an environment where dementia patients can be looked after effectively, compassionately, and as effortlessly as possible.

Yes, that does give me clarity on what’s important🙂 Funny how much a simple thought experiment can help.

Now, what happens when I step out of the experiment? I say, hey, that was just a thought experiment. It’s not going to happen🙂 Do I still have any energy/ will left to act? Let’s see…

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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.

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