Medical Research on Dementia, Brain Banks

A slight diversion from the main theme (dementia and caregiving) that I am exploring–this is about the brain, and how doctors need brains to study and what we can do about this.

We all expect doctors to cure our health problems, or at least treat them and make them bearable. We go to clinics and hospitals hoping that medical professionals will have solutions for problems our bodies throw at us. We expect them to be gods.

How do these gods get their toolkits? How do they know what a set of symptoms means in terms of what our body is doing and why? How do they create drugs and decide on surgery and other interventions to resolve these?

Medical researchers research living people, studying them for specific diseases, studying them for demographic correlations between diseases, for correlations between external factors and the incidence of disease. There are longitudinal studies that take years to get some idea of the nature of the beast they want to tame. They simulate conditions in their labs and try to extend their knowledge. They study biochemistry and so many other disciplines to chase up and model the disease better, and to model potential solutions. They design drugs and treatment protocols, and run experiments on animals that are similar, and on us, those of us who sign up for human trials. They study long term effects, they convince regulatory bodies.

It is a long process, with multiple steps, multiple disciplines, and innumerable ways things can not get found. There are too many leads to follow, too much uncertainty, and quite a lot dependent on chance (the right idea to the right person at the right time, and the availability of the right funding). Possibly, if there is not enough of research  going on, we would see no progress in medicine.

There are diseases I want cures of. Like dementia, which my mother has. Like diabetes, which my father had, and I keep checking myself up for. Like so many diseases I could have inherited or that I dread or see around me.

The question is, what am I doing to help the medical profession find breakthrough treatments? What are most of us, who are so quick to expect (or criticize or feel disappointment), doing?

The answer is, probably nothing.

We may be indirectly helping when some student with a clipboard in a hospital takes down some information from us regarding our disease and our demographics, because that data gets plugged into some database. we may be helping indirectly when the doctors treating us use our data for case studies. But I don’t know too many people who participate in human trials or actively cmmunicate with medical researchers to provide them data, or even donate to medical research (well, maybe Bill Gates, but most of us assume that only people of that financial stature contribute to medical research).

Of late, my lack of participation has been bothering me. When I go to a doctor, I expect treatment that works, that is safe. Yet I do nothing to make it possible. Hey, I don’t even like it when a junior doctor sees me instead of the senior one, but come to think of it, how will the next generation of doctors get trained and competent if they don’t get hands on experience? Yes, valid point, I say, but get that experience elsewhere, give me the best doctor.And if a treatment does not work out, I don’t go back to the doctor to say–hold it, man, your medicine made things worse, don’t do that to the next case like mine. No, I go to another doctor because I want to get well, which is fine, except that the first doctor is probably assuming I got well, and will use the same approach on another hapless patient.

For the last few months, I have become aware of how self-centered my approach to doctors and others of medical professions has been, and I would like to change things, but I have no easy answers. I do know that if a doctor or researcher now approaches me for participating in a study I won’t rule it out straightaway. If there is a questionnaire to fill, I will probably do it.  And if I get to know of a reliable institution requiring funds for research, I would consider it just like I consider all those charities for children funds.

One thing I have done, though, is sign up to donate my brain to a brain bank. This doesn’t require doing anything while I am alive, because my brain will very much continue to remain where it best fits–my skull 🙂 But my signing up states my intention that my brain be made available to medical researchers who want to study human brains so that they can understand and treat problems. The human brain is unique, and no amount of studying brains of apes and rats will help solve problems specific to humans. There is a severe shortage of brains that can be studied, because hardly anyone thinks of brain donation. We know about eye donation, even kidney donation, but brain? Nada.

Please do consider it. You don’t lose anything while you live, but your signing up helps. Make sure relatives and friends understand your wishes and are willing to do whatever they can to honor them.

Related post here: Returning with a brief update, and thoughts on brain bank

Important Note:When my mother died in March 2012, I donated her brain; a description of my experience of donation can be seen here: Impermanence, Death, Closures and Continuity through Body Donation

A comprehensive FAQ for various types of donations, including brain donation, is available here: FAQ on Organ/ Body/ Brain/ Eye Donation.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

2 Responses to Medical Research on Dementia, Brain Banks

  1. I support the idea of brain banks because it can definitely help others (like those who suffer from severe dementia) survive and live another day. Thanks for sharing!

  2. Pingback: returning with a brief update, and thoughts on brain bank « Swapna writes…

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