INTERVIEW: Dr. Allen Power, Author of “Dementia Beyond Disease”
The geriatrician Dr. Allen Power published his first book, Dementia Beyond Drugs: Changing the Culture of Care, in 2010. The book was widely praised within the culture-change community and beyond; the book won awards and led Dr. Power to become a full-time “traveling educator on transformational models of care,” as he describes himself. (Among many other upcoming engagements, Dr. Power will be speaking at the 2014 Pioneer Network National Conference.)
Dr. Power’s second book, published in June, is entitled Dementia Beyond Disease: Enhancing Well-Being. Conceived as a supplement to the first book, Dementia Beyond Disease ended up expanding on the themes of its predecessor (it is actually 40 pages longer than Dementia Beyond Drugs). Dr. Power says that Dementia Beyond Disease outlines a “strength-based approach to dementia care that looks at the person through the concept of well-being.” Recently, PHI spoke with Dr. Power about dementia care and his work:
Q: What led you to explore dementia as an academic topic?
A: There were a lot of reasons. From 1991 until just a few years ago, I worked full-time in large nursing home communities, and I prescribed a lot of antipsychotics for a lot of people with dementia. Even though the drugs would quiet people down, I never felt that I was really giving them what they needed, which was relaxation, engagement, enjoyment of life, improved well-being. My struggle to try to explain that to my colleagues and co-workers, and not being able to really clearly express my thoughts, is what led me to write my first book. That’s really what launched me down this road.
Q: In Dementia Beyond Disease, you write about how drug-based interventions fail to acknowledge the humanity of people with dementia. But you also write that “holistic” approaches to dementia care also fall short.
A: We try to avoid the use of medications, and that’s great. But we tend to replace drugs with what we call “non-pharmacological interventions.” These are often nothing more than a laundry list of things we think might work when people with dementia experience some sort of distress. The problem is, they’re usually reactive, not proactive, and they often don’t really tie in to the individual and his or her history — nor do they try to understand what is behind their distress in the first place.
A few years ago, I gave a talk in Iowa, and I heard about a gentleman at an assisted living facility in a rural area, who, shortly after moving in, kept trying to go out the back door into the facility’s fenced-in backyard. And of course he would get redirected by staff, and they would then try to divert him, but he would just get more insistent. Eventually, the manager suggested that they just let him go out the door, watch him, and see if he can show what he is trying to do. So they let him go outside. Now, the backyard adjoins a cow pasture. And he walked out and watched the cows, and after just watching them for about 15 minutes, he came in and sat down, and he was fine. In talking to his family about that, they mentioned that all his life he was a farmer, and he always started each day by going out and checking his cows. So he was repeating a pattern from throughout his life.
In a person-centered approach, if we see somebody who’s trying to leave the building, we’ll play some music for them. We’ll give them some aromatherapy. We’ll have them fold laundry. But none of those things are ever going to work! All they want to do is check the cows. So unless we really try to understand who the person is and what they need to be well, then we’re really not doing any better than just responding with pills. We may calm someone for the moment, but the underlying need is still there.
Q: Could direct-care workers take something away from your book in terms of improving their ability to provide dementia-care services?
A: Oh, absolutely. I wrote both my books in fairly direct English. I don’t write like a doctor for other doctors, because I think the audience is broader. And actually, I don’t think that doctors are the ones who are going to create change. The people who can have the most effect are those people who are closest to the elders: direct-care staff and family members. So I wanted to be sure that the book really spoke to them. Really, my target audience is professional care staff, whether it be nurses, aides, etc.
Q: Do you think that most people misunderstand dementia and Alzheimer’s, even within the field of long-term care?
A: I think that there’s incredible stigma about Alzheimer’s and dementia. And it’s not just confined to long-term care. One of the big points I try to make is that the overuse of antipsychotic medications is not a nursing home problem. Nursing homes are identified because, due to the MDS tool, we can follow the statistics of how many nursing home residents are getting these drugs. But the truth is — if you look at the very few studies that are out there — there are probably many, many more people taking these drugs in their own homes than there are in nursing homes. So the ways in which dementia is stigmatized is not exclusive to long-term care: They are societal paradigms and patterns. It’s not just enough to change nursing homes — we have to change the way society views and responds to dementia.