Allen Power's Blog

I am just finishing up a wonderful West Coast trip, having spoken at 6 different events in the Bay area and Portland, Oregon this week. During one talk, I expanded on a concept I very gently broached in a recent blog post, and I got some strongly positive responses, so I will add my thoughts here. Hopefully I can do this without alienating my good friends in the specialty of psychiatry…

It has become clear to me that we use psychiatrists extensively as consultants for people living with dementia, particularly in long-term care settings. It also has become apparent that the majority of referrals center around various types of distress for which the care staff need assistance. Therein lies a very basic problem, another flawed paradigm.

It appears that increasingly (or maybe it’s always been this way), dementia is seen as a psychiatric illness. Psychiatrists–specialists in such illnesses–naturally come to these consults with that mindset, thus reinforcing what I feel are flawed ideas: that the symptoms of distress are akin to the symptoms of psychosis or other psychiatric illnesses, and that neurochemical manipulation is the solution. My experience is that these consultants, more and more, are used as “expert pill jockeys”, helping us navigate the best choice of antipsychotic, or the optimal dose of an anticonvulsant, in order to “control the behavior.”

Here’s the problem as I view it: Dementia is not a psychiatric illness. It is a change in one’s experience of their surroundings and how they process information, based on structural neurologic changes. It is as much a psychiatric illness as would be a stroke. And people’s interpretations of the world around them may seem confused to us, but they are nothing like the symptoms of an organized psychosis.

Unfortunately, the preconceptions that come from this mindset often blind us to the idea of looking for non-medication solutions, which research has shown more and more to be the safest, most successful and most durable ones (especially if they are coupled with supportive operational changes within the care environment).

Don’t get me wrong–I think we need psychiatrists more than ever for people with dementia in long-term care. We just need a different kind of consult.

Psychologist Dr. Richard Taylor, a person with dementia, reminds us that his greatest struggle is to deal with his changing cognitive abilities and to “make sense of today.” There is an ideal opportunity for psychiatrists and psychologists to help the burgeoning number of people with dementia to navigate these difficult changes and find successful ways to cope and adapt to them in a meaningful way. A bit of Viktor Frankl–finding meaning and purpose in one’s life situation–wouldn’t hurt either.

It’s time to reclaim dementia as a neurologic disability with secondary psychological challenges, and to find ways to help people grow and be successful, rather than simply finding another pill of dubious value.

Reporting from beautiful Lake Como…

A recent online Medscape post reported on a presentation given at the American Association for Geriatric Psychiatry that called into question recent government efforts to decrease antipsychotic use in people living with dementia. The researchers presented the results of an antipsychotic withdrawal trial in which twice as many people relapsed when switched to a placebo as those who remained on the antipsychotic. Based on these results the investigators strongly recommend re-examining current Federal guidelines for attempts at drug withdrawal.

To me, this represents a perfect example of how our biomedical/psychiatric view of dementia and its related distress has put serious limitations on our vision. An entire body of psychosocial literature has been ignored with this study, and an erroneous premise has led to an equally erroneous conclusion. How could a room full of physicians “thunderously applaud” the study’s recommendation, with no notice of the hole you could drive a truck through?

Let’s consider a few points:

1) Drugs were either withdrawn or not. It does not appear that anything else was done as an intervention. This reflects the flawed premise that the episodes of distress seen were merely caused by brain disease and that the pill is necessarily the answer.

Yet there is a world of literature tying behavioral distress to unmet needs and environmental triggers. Nothing was done to identify or satisfy these needs when the drugs were stopped. Of course people got worse!! They went from being sedated in a world where they could not find well-being to becoming alert with the same unmet needs.

2) This study contrasts with a body of literature (referenced in my book) showing that, with targeted interventions, the majority of people can have antipsychotics stopped without objective evidence of worsening distress.

3) The problem of “psychosis”: In contrast to the statement at the conference that “this study justifies why geriatric psychiatrists are so important”, the involvement of psychiatry in this manner can be a double-edged sword.

Dementia, in my opinion (and that of many others), is not a psychiatric illness. Leading researcher Jiska Cohen-Mansfield has gone so far as to state that “it is time to abandon use of the the term ‘psychosis’” when referring to the symptoms of dementia, because what we are seeing is a different process than that of schizophrenia. And in fact, misinterpretation of one’s environment by a person who processes information differently is not psychosis, but too often gets labeled that way. (See my concluding story below). So the application of psychiatric logic can totally misrepresent the experience of people living with dementia.

4) A third of the people left on antipsychotics had a relapse, and 40% of those taken off did not, yet the study was quick to discount other possible interpretations for the data. The presenter stated that he uses divalproex and risperidone regularly and “70% to 80% of my patients do well”, even though no study in history has ever suggested more than a very modest benefit, if any.

5) “Improvement” continues to be measured only by reduction in negative symptoms, rather than any improvement in positive aspects of well-being, which leaves the concept of sedation very much in the mix.

Once again, one need only look to Ecumen homes, who in Phase 1 of their “Awakenings” study, took all 10 people using antipsychotics for their dementia off of the drugs in one small nursing home. They also provided additional interventions, along with increased staff education and support.

Not only were there zero relapses after 6 months, the 10 individuals began showing cognitive capabilities that were thought to have been long lost, suggesting that there are subtle yet powerful effects on cognition going on with these drugs. Ecumen is now in the process of removing these meds at their other 17 homes.

So once again, we are stuck in what I call “The Pill Paradigm”. It’s not a question of the best pill; it’s a question of whether any pill will be the answer to a person whose changing experience of the world is not appreciated and complemented by the care environment.

On to the story:
I heard last fall of a gentleman in the Midwest who began getting very agitated when sitting in the lounge. Even when it seemed quiet and there was no interaction, he would suddenly start yelling, “Stop it! Stop it! Make it stop!”

Now our biomedical view of dementia, especially of the Lewy Body type, would lead us to the conclusion that this was some sort of hallucination or delusion. It occurred on and off, and with no obvious triggers.

But one staff member refused to go down that road. He sat quietly in the lounge near the man, centered himself, and made himself acutely aware of all that he could hear or feel in his surroundings. What neither he, nor anyone else, had noticed before was this: the window had been left slightly ajar. It was very windy that week, and every time the wind began to blow hard, there was a soft, but distinct high-pitched whistle coming through the crack in the window. And every time it happened, the man shouted.

The window was shut tight. The “psychosis” was cured. Please tell me: where do antipsychotics, our any drug, come into play in that scenario?

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: http://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
settings?
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
mind?
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
succeed.

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
Pearce.

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.

I was speaking in Ohio earlier this month and had an experience that reinforced an important lesson for me. I was giving a community talk on dementia and a TV reporter came to interview me before the talk. We put on the microphone and launched into a 10-minute conversation on camera. She asked a lot of good questions, and then as my message became clearer to her, she threw me a curveball.

She said, “A man disappeared from his house in our community a couple of days ago and they haven’t found him yet. Do you have any insights about problems like this?”

In the split second before I opened my mouth, three thoughts flashed into my head: (1) You don’t know the details, (2) Don’t blame anyone for not watching him, and (3) But you can’t advocate locking everyone up, either.

I just began to speak from the heart of my approach and my mind went to a very different place. I said, “Often, when we acquire the label of ‘dementia’, we are seen as incapable of choice, and so this is taken away from us very quickly. I think that there are times, whether it be in a nursing home or one’s own home, when a person feels so disempowered that they have a need to exit and try to find a place where they can exert some choice and control once again. I think that if we can begin to partner with people in their care right from the start, often there will be less likelihood of such a catastrophic reponse.”

I went on to give my talk, but in the back of my mind was the question, “If that comment is broadcast, especially out of context of the other questions, how many ways can it blow up in my face??”

The next day I spoke to professional care partners. One of the organizers mentioned to me that he heard on the news that the gentleman had been located, and that he was safe. My host said, “It turns out that the guy took off because they were about to hold a court hearing to assign guardianship to a family member.”

Powerful stuff, choice.