I’ve been a bit remiss in my blogging of late. I guess more timeliness will have to be my New Year’s resolution.
Meanwhile, I am cross-posting an interview I had recently with Stephen Woodfin. Stephen is an attorney, a novelist and a blogger with an interest in issues of aging as well as dementia. Here are the questions he asked me about my book, and my replies:
Q: Dr. Power, in your book Dementia Beyond Drugs, you describe your approach
to the treatment of persons with dementia as “experiential.” Tell us how an
experiential model differs from the dominant medical model.
A: The traditional biomedical approach is a deficit-based view that focuses on
neuropathology and tends to blame brain disease for distress. The experiential
approach holds that the best way to care for a person living with dementia is to
understand them as a person and their individual experience; so I use the very
holistic definition that “Dementia is a shift in the way a person experiences
the world around her/him.” This idea of changing perspective is something to
which we all can relate, and this commonality helps us build a bridge to better
understand the person’s needs.
This is also an approach that does not require a detailed knowledge of the
person’s exact brain pathology. While such distinctions are useful in a research
environment, I find that they lead to generalizations that stigmatize and
position people in real-life care. I wanted an approach that would work for
almost everyone, and for which the person providing care didn’t need specialized
knowledge to understand how best to support the person in their care.
Q: You point out that a person with dementia who receives treatment at home can
be just as “institutionalized” as a person in a nursing home. What do you mean?
A: The institution is more than a building. It is a rigid environment that
disempowers individuals through hierarchical authority and priorities that are
not always in the individual’s best interest. When a person at home has lost all
input into daily decisions, becomes isolated or objectified, and/or when her
care suffers because the “caregiver” is burned out from lack of resources and
support (which often leads to isolation and overmedication), then she can easily
become institutionalized in her own home. I saw a dramatic example of this a
few weeks ago, which I posted on my blog. (For brevity’s sake, here’s a link to
the post: https://changingaging.org/alpower/2011/11/23/the-power-of-choice/ )
(Of course, you need look no farther than The Sickle’s Compass to see another
good example of this! [Al was kind enough to mention my novel about Alzheimer’s,
which he recently read. Thanks for the mention, Al,-SW])
Q: You are a guitarist-singer-songwriter. How do you utilize music in your
work with persons with dementia?
A: People with and without dementia connect through music on a variety of
levels. Sharing melody, rhythm, emotions and stories of the human experience can
have incredible powers of connection and even healing. In the case of dementia,
it is quite beneficial in the ways it can trigger memory, release stress, or act
as a conduit for people who have lost the ability to easily relate through
normal conversation. I love to share music with people whenever I travel, and at
St. John’s Home in Rochester, where I work. I usually do a concert or two each
year, as well as impromptu singalongs and annual Christmas caroling.
Q: You call for a radical re-orientation in dementia care away from the medical
model toward one that focuses on partnership. Do you see evidence that this
partnering approach is gaining traction, and if so, where and in what sorts of
A: I think that the dominant paradigm has recently been coming under more
intense scrutiny. As I write this, Congress and the Feds are holding a hearing
on the overuse of antipsychotic medications in dementia.
As I have traveled, I have encountered numerous people and organizations who
relate their own experiences and successes with a partnership approach. I was in
Waterloo, Ontario, Canada, yesterday, where the Murray Alzheimer’s Research and
Education Programme (MAREP) is a world leader in teaching us how to form
“authentic partnerships” with people living with dementia. For 5 years, they
have sponsored “A Changing Melody”–a conference planned and presented by people
living with dementia, for their peers, and for professional and family care
partners. I attended the conference last March and was blown away!
MAREP is creating a partnership toolkit to teach families to partner with their
loved ones, and has also published a series of “By Us For Us” guidebooks of peer
advice for living with dementia.
Many other organizations are reporting success in reducing or eliminating
psychotropic medications and improving not only well-being, but cognitive
function as well.
Q: You mention that we may have much to learn from the way other cultures treat
people as they age and encounter dementia. Are there examples that come to
A: One great advantage of traditional societies is the way they value elders
and keep them integrated into their social network. These views have been
challenged by developmental forces that are pulling family members out of the
traditional home care role in traditional societies, but the values can be
preserved in spite of modernization, and can be adapted to
industrialized society. Developing guidelines for socially integrated,
sustainable communities is the focus of my Bellagio Residency next spring with
my friend, Dr. Emi Kiyota, a world-renowned environmental gerontologist.
Emi has said, “I have seen elders in Africa living in grass huts with children
at their feet who are happier than people in assisted living with chandeliers
over their heads.”
Q: If a person with Alzheimer’s is already on anti-psychotic or similar
medications, what do you suggest as a means to have her course of treatment
re-evaluated to determine if she can have a better quality of life without them?
A: We need to go beyond the usual audits of comfort, toilet needs, etc. to look
at deeper unmet needs. I like to look at indices of well-being. There are many
ways to define this, but I like the following seven domains: identity, autonomy,
security, connectedness, meaning, growth and joy. These become challenged to a varying extent in dementia, both due to brain disability, and due to excess
disability caused by our approach to care. By replenishing these domains, we can
often help a person re-engage and find more contentment.
Doing this requires that we step outside our own perspectives and try to truly
understand the unique perspective of the person with dementia, in order to
understand what they need to succeed. Because we learned to understand the needs
of people in wheelchairs, we created ramps and other forms of disability access
to buildings. Now we need to build “cognitive ramps” for people with dementia to
Q: Obviously, many of the decisions care partners have to make come down to
funding. What sources of funding are available for persons who seek the
experiential model instead of the medical one?
A: The biggest investment of this approach is to undergo a change in our own
attitudes and in the way we interact with people who live with dementia. One of
the most underappreciated aspects is the extent to which the interpersonal
environment can affect the well-being of people with dementia. We are
resource-challenged in all care environments, but without the proper mindset,
all the money and staffing in the world will not create well-being.
Q: If you could recommend three books for care partners to read (excluding
your own), what would they be?
A: There are so many good ones, covering many different aspects and approaches,
but I would start with three books that should be basic reading. First, two books
by the true experts–those who live with dementia: “Alzheimer’s from the Inside
Out”, by Dr. Richard Taylor, and “Dancing with Dementia” by Christine Bryden. For
more insights into the interpersonal dynamic, try “Inside Alzheimer’s” by Nancy
Stephen’s blogs and book reviews can be seen, among other places, at www.venturegalleries.com, and his review of my book is at http://venturegalleries.com/blog/where-are-mommas-pills-a-review-of-dementia-beyond-drugs-by-g-allen-power-m-d.