A bit more about “Dementia Beyond Drugs”

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.

About Dr. Allen Power

G. Allen Power, MD is Eden Mentor at St. John’s Home in Rochester, NY, and Clinical Associate Professor of Medicine at the University of Rochester. He is a board certified internist and geriatrician, and is a Fellow of the American College of Physicians / American Society for Internal Medicine.
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14 Responses to A bit more about “Dementia Beyond Drugs”

  1. My mother-in-law was recently moved into a nursing facility. She is now suffering from early onset dementia although the Drs. still have no idea what might be causing it. They think it could be early onset alzheimers, possibly caused her drug cocktail or she’s just attention seeking.
    It breaks my heart to see her like this, so reading the above has been very helpful. Thank you very much!

    • Allen says:

      Thanks for the comment, Tracy. There could be a variety of causes–no one knows exactly why this occurs at various ages. I would try to not latch on too much to any doctor’s characterization of her as “attention-seeking”. If she has real cognitive disability, then she needs a lot of positive support for that.
      My best advice is to remember that she is still all there and still living life, albeit with a disability. The best we can do is to help her maintain the most positive life she can with that disability. There is still much for her to look forward to in life, if we help create that future with her.

  2. I was interested in your comments regarding treatment of people w/ dementia. I have worked many years as an Activity Leader in a large nursng home and I recently placed my own mother who started w/ mild cognitive loss and has now progressed to early stage Alzheimer’s. Her only prescription meds are Remeron 45mg for depression and Lorazepam for anxiety. She’s complained for the last two years of blurred vision but when we tried taking her off the Lorazepam she exhibited signs of anxiety so we put her back on the .5 mg dose. She has blamed losing her possessions on other people for many years and I was interested in your thoughts as I believe Mom has had cognitive loss for a number of years. What has been difficult in treating her is the fact that she has lived in either a physical abusive situation (her mother beat her w/ a hairbrush and she lost her hearing in her rt. ear.) She married my father who emotionally and economically abused her as he was obese and since he couldn’t control his appetite he controlled everyone he could whom he came in contact with. She no longer remembers the abuse from Dad. What interests me is that in your research have you found that people w/ dementia often crave one to one attention and become jealous if someone else in their living environment requires more care than they do? I do agree w/ your approach using music to calm and help dementia people have a feeling of self worth as I have found that many people can recall parts of songs and love to sing-a-long. Thank you for your insights.

    • Allen says:

      Thank you for your comments, Phyllis. There is no doubt that past traumas often resurface while living with dementia, often not as specific memories, but as feelings of anxiety, mistrust, paranoia, etc. Undarstanding the person’s history is very helpful in finding ways to provide a caring and supportive environment. Often, aspects of well-being have been eroded by the past abuses, and even though the person may not be able to engage in a psychotherapeutic approach, by replenishing those areas of eroded well-being in the present, we can often help heal the wounds from the past.

  3. Wendy Brewin says:

    I’ve been searching for a while, trying to find a blog about dementia that is informative, down-to-earth and not all doom-and-gloom……….and I found yours!

    I read your recent post and it rang so many bells. I’m involved in a project that is all about helping people with dementia to re-connect with their communities through the use of outdoor environments. We’re showing carers that making better use of their gardens (and improving them) will help to reduce anxiety levels and feelings of isolation, improve sleeping patterns increase social integration and improve community awareness. Good use of well-designed outdoor spaces support carers in dementia care as well as provide meaningful recreational opportunities for residents (not to mention the well-known health benefits of spending more time outdoors!).

    I was particularly drawn to your comment about the isolation of people living at home; due to lack of support or resources for the care giver. We’re taking our project out into the community, to home carers, in the hope that we can provide some of those creative resources that will support them in raising the quality of life for those they care for.

    I’ll be coming back to read your blog on a regular basis and will link to it through our website.

    Thanks for an interesting and uplifting blog!

    • Allen says:

      Thank you for your insights, Wendy. Gardens can be incredibly useful, both as therapy and also simply as a centering outdoor space. You might be interested in the work of my friend Dr. Emi Kiyota, an environmental gerontologist and occasioanal co-collaborator. She has a lot of experience with therapeutic gardens, and her larger community work can be seen in her new organization, Ibasho (www.ibasho.org).

      Best of luck in your work. Would love to see what you and others are doing in the UK, and I may be coming over this fall.

      • Wendy Brewin says:

        Hello Allen,
        Thank you for directing me towards Dr. Kiyota’s website – as it turns out sustainable communities is another of our working areas so I’d be interested to look at her work. If you do come over in the autumn and are travelling in the South West then please accept an invite to drop in for a chat….it’s always accompanied by tea/coffee and cake! We are based at the Eden Project nursery near St. Austell on the south east coast of Cornwall. The Creative Spaces project ends this August but we have applied for extension funding so that we can take the processes used at the care home, out into the community to support home and outreach carers…..fingers crossed!

        best wishes and thanks again,

        Wendy

  4. Sheila Pagliaro says:

    Loved your book. Now a question. My Mom has vascular dementia and lives in a Sunrise Senior Living facility. Her major issue is anxiety. They started her on Seroquel 12.5 mg BID. That was 1 year ago. They want to increase the dosage to 25mg BID because her anxiety seems to be getting worse. Some advice please. Mom is 94 years old.

    • Dr. Allen Power says:

      Seroquel is not a drug for anxiety. It is an antipsychotic. If it lowers anxiety, it does so primarily through sedation. Raising the dose will likely raise the level of sedation and open her up to a greater risk of potentially harmful side effects. The key is to look further into her anxiety and find its roots, if possible. They usually lie in a challenged ability to experience well-being, which can be expressed as the seven domains I described in my book. So, for example, a lack of ability for her to have choice and control, a lack of familiar and consistent care partners, or a lack of private space that is respected by staff could be contributing factors to erosion of autonomy, connectedness, security, and so on.
      If in spite of all that investigation into unmet needs, it is felt that her anxiety requires medication, there are safer and more appropriate drugs to use.

      • Sheila Pagliaro says:

        Thank you for your quick reply. I think the needs you mentioned are for the most part being met. Her short term memory at this point is all but non existent which increases her anxiety. Any suggestions you might have for a more appropriate drug that might help would be greatly appreciated.
        Sheila

        • Dr. Allen Power says:

          With the usual disclaimer about not knowing your Mom’s specifics, I have a few general things that work best for me, though there is usually no drug that will completely remove all anxiety. I tend to avoid the traditional anti-anxiety drugs (Valium, Ativan, Xanax, etc.), due to increased risk of falls and sometimes worsening confusion.
          The safest approach to chronic anxiety is often an antidepressant, like Zoloft, Celexa, etc. However, these do not work “on the spot” like the tranquilizers; they need to be taken regularly for several weeks, similar to their use in treating depression. Also, some brands can potentially increase anxiety, and each person is different so I start with a relatively short-acting SSRI and increase slowly.
          All other drugs that specifically are used to calm anxiety do it through at least some degree of sedation, but the least sedating other options are trazodone, which I also often use as a safer sleep aid, or a drug like BuSpar.
          Good luck!.

          • Sheila Pagliaro says:

            Thank you for the advice. I will speak to the MD where my Mom is regarding your suggestions.
            Sheila

  5. BEA SPIEGEL says:

    II understand that you will be speaking in the area in a few days and wanted to hear you but have no competent sitter for my husband who has dememtia . I am the care giver and we are in our mid to late 80’s and have always been active in organizations and my husband was very creative with his hands and taught silversmithing as a hobby course for many years in a community college—the illness has robbed him of his ability to identify tools –to design and the lack of cognetive ability has caused depression at times—I was fortunate–after much searching to find a 10 week course in creating hands on crafts and visiting galleries- to learn more about art—for six patients and six care givers—it covered many fields and gave new life to the patients and a bonding between the care givers who needed the support of each other. The leaders were social workers with the alzheimers society and the instructors were patient and made the whole experience pleasurable. It would be wonderful if more of this type of activity was available . I thought this might be a suggestion for other
    people in search of keeping family members in the real world—I had heard about it from the States but this is something new for Canada. Do you have any other suggestions in this area? My husband is on exelon and ebixa and they seem to have slowed the progress–somewhat. I wish my role could be better defined— sometimes my frustration needs curbing. I have tried to buy your book locally but it is only available by mail.I shall keep trying. Your comments and replies were helpful.

    • Dr. Allen Power says:

      I am sorry you are unable to come to the talk (I am assuming you mean the one in Kitchener in October). I don’t know about your husband’s situation, but if he is able to come with you, that would be an option. I am speaking from 8:30 – 11:30.
      The sponsoring organization, Allies in Aging, would likely have additional information and resources for you. Also, the Murray Alzheimer Research and Education Programme works in conjunction with the University of Waterloo and there may be resources for you there.
      Unfortunately, my book is not in many stores and is mostly available by mail order. The easiest for you might be your regional Amazon website. Or you can call the publisher at 410-337-9585 and they might be able to connect you with a Canadian distributor.
      Thanks for writing and best of luck!

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