Monday, July 9, 2018

Dementia Studies


The Bronte parsonage in Yorkshire

The impetus for our journey was an invitation from our old friend, Murna Downs, to give a couple of talks and meet with faculty and students in the Centre for Applied Dementia Studies at Bradford University. Bradford has long been a center for innovative work in dementia, and for the past several tears has offered a Ph.D. In Dementia Studies. The more we talked with Murna and her colleagues and students, and with two other friends, Linda Clare and Siobhan O’Dwyer who are researchers at Exeter University, the more it seemed that Dementia Studies was an idea that’s time had come. 

What became apparent in our discussions is how little progress there has been in care of persons with dementia and their families in both the UK and US and probably other places. Problems that were endemic and easy to fix, like making sure people with dementia aren’t overmedicated, have not been fixed. And it is still true that hospitals do on average a poor job of treating persons with dementia. Also still true is that when there are sudden changes in a dementia person’s functioning, doctors and nurses automatically assume it is due to the underlying dementia, but don’t look for possible treatable illnesses. And beyond that, despite notable exceptions, care facilities offer lackluster and sometimes cruel care.

These are problems that can be fixed but somehow it doesn’t happen. We don’t need to wait for an effective medication for dementia. We can make these problems better now. Over the years, Judy and I have visited wonderful programs and known health care providers who knew how to provide high quality care. They understood, for example how to talk to persons with dementia with respect, how to work around cognitive difficulties, and how to manage behavior problems. We have known excellent care facilities in The US and abroad. What is frustrating is how little progress there has been in implementing this practical knowledge widely. We have trained geriatricians, geropsychologists, geriatric social workers and nurses, but there simply are not enough people with training and not enough transfer of the knowledge from the truly good programs to the rest of the field.

So maybe we need Geriatric Studies to light a fire, to train bright and committed students who can advocate for better standards of care and to do the research that shows that good care is good for both patients and families and maybe even costs a little less. There has been a tremendous effort in the US and UK to increase research funding for basic biomedical work on dementia. Finding an effective treatment is a worthwhile goal, but in the meantime, we need to gather all the clinical wisdom that has accumulated in the stellar programs that have treated persons with dementia over the years. These are terrible diseases, yet we can reduce suffering with techniques that have been around for a long time and with new approaches. We can’t focus just on the biomedical aspects of dementia in research. Rather, There needs to be appropriate funding for people who have dementia now and their families, both in terms of implementation of what we know and expanding the knowledge base around care.

There is much work for Dementia Studies, and the bright and motivated students we met at Bradford University may be on the right track to begin making a difference.

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