This is a “welcome back” post – I’ve been micro-blogging in other places (like FB), but a recent article in the NYT’s prompts me to return to long format.
Today’s article in the NYTs by Gina Kolata points out what the folks working in advancing dementia care have been saying all along. We are at a point where the massive efforts for early detection have resulted in a moment when doctors can diagnose but prescribe nothing. And by prescribe, I don’t mean pills.
In the last 6 months alone I’ve been at two meetings to address this issue – both meetings rang with enormous urgency. In June a huge group of leaders in dementia care and research gathered in DC to create a white paper on “non-pharmacological treatments” for dementia. They have since eschewed that name for “life-enhancing” practices. It was a who’s who in dementia care – over 40 people squished around the tables at Leading Age (which generously hosted us). And the white paper has been a marvel of sausage-making. But I’m hopeful that bringing all those voices together might lend strength to the ideas that it is unethical to advance detection without advancing care. Especially when there are so many care practices that are wrapped in promising research.
In September my friend and colleague Kate de Medeiros and I presented a paper at a special symposium organized by the National Academy of Science to address the state of research in Arts, Health, and Aging. You can watch the video of those proceedings here. Kate and I were stunned by the research and practice mismatches – that research that showed pharmacological treatments with enormous potential side effects, high costs, and no impact on quality of life were being implemented far more widely than life-enhancing treatments that have no side effects, low cost and positive impact on quality of life because of a gap in research.
The “gap” it seems to us is conceptual (and of course financial). The expectation of reaching a large group of people all with the same level of dementia, in living situations that are the same, who don’t know if they are being given a placebo or the experiment treatment, by people who have been trained exactly the same (and not by one charismatic trainer) is not, I believe, possible. Does this mean we can NEVER prescribe these life-enhancing treatments? Or does it mean we must find other methods of research that are appropriate for these enormously complex settings?
And really, who will profit from the prescription of “meaningful engagement through the arts?”
My hope comes from the fact that these discussions are happening and that a new call from the NIH is interested in figuring out this issue. My despair comes from the fact that the conversations are happening over and over…without seeming to move forward.
My mom called me the other night with a story (that I hear a lot unfortunately) about a friend who has dementia. It seems she was in a “nice” place, but is now reported to be getting “aggressive” and they are demanding that she be drugged or they won’t be able to keep her there. Perhaps I’ve been in the “bubble” lately, only hearing the talk of colleagues who KNOW that “behaviors” are communication – telling caregivers that something in the care context isn’t right. They have an unmet need. So these moments when you see these drugs used as an excuse NOT to change the care, not to inconvenience the caregivers, is a bit of a shock.
The advances made on alerting people to the side effects of psychotropic drugs (side effects like death…) hit a wall recently when a New England Journal of Medicine published an article about the “risk of relapse” in people with dementia who are taken off Risperdone. The “challenging” behaviors come back. They make NO mention at all of the possibility that the toxic environment of care might still be present as well. That their needs – perhaps for pain medication, perhaps for basic human connection – might still be unmet.
I continue to work on ways to bring Life Enhancing treatments to people with dementia. These same treatments also enhance the lives of the people who provide and participate in them – because they help to forge a sense of purpose and meaningful relationships in a very challenging physical and emotional time. We are working to wrap research around these practices – research that will hold up. But I know deep-down that with the competition for dollars in the field, these practices will never be “prescribed” unless we create consumer desire for them beyond the data.