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Learning and Dementia – Rant #537

In the latest issue of Provider magazine, a new Dutch study is highlighted with the following cover teaser: “Alzheimer’s Finding Surprises Researchers”. So of course, I rushed to the article to find out what happened that was so shocking.

Turns out that people with Alzheimer’s can still learn! By testing the memorization of a way-finding route, the researchers found that markers along the route were learned and recognized by the subjects, even though many people living with Alzheimer’s have difficulty with visual-spatial skills.

Radboud University released a statement noting that “We must now dispose of the idea that Alzheimer’s patients are no longer capable of learning.”

What better statement to show how far we have traveled down the wrong road in our view of dementia!! Of course, people with dementia can still learn! We all know this–how can we have possibly convinced ourselves otherwise??

This article shows precisely how our deficit-based model has poisoned our view of people living with dementia, which subsequently affects our ability to care for them and provide true well-being. Tom Kitwood, father of the concept of “positioning”, is no doubt rolling over in his grave. (Kitwood stated that once people are labeled with “dementia”, we automatically “position” people as being less capable than they are, and/or blame everything we see on the disease, rather than looking deeper and seeing the whole person.)

If we look at people living with dementia as whole people, we see that they learn all the time. I often illustrate this to my audiences by saying, “If you think a person with advanced dementia cannot learn new things, try this experiment: Have 3-4 staff members take him to the shower room and force him to have a shower he doesn’t want. Then take him back there a few days later, and see if he has formed a new memory of what happened last time!”

The researchers go on to say that such automatic learning persists even though “conscious learning may well be long gone”, another reductionist view that is patently false. The brain is plastic, and a damaged brain still has plasticity. How else could a person with dementia moving into a care home start calling his primary nurse or aide by name after living there for several weeks? There’s nothing “unconscious” about that type of learning.

It’s time to adopt Dr. Richard Taylor’s view that “I am not dying of a fatal disease; I am living with a chronic disability.” Then, maybe we will stop selling people short and try to help find ways to enable them to succeed throughout their lives.

This Is What It’s All About!

It has not been a smooth road for St. John’s in our efforts to build Green Houses® out in communities around Rochester. There has been a lot of resistance from Federal regulators who can’t imagine how we can keep 20 elders safe when living 10 miles from the main campus, or how the houses might be effectively surveyed along with the rest of the organization.

This is a case of “not seeing the forest for the trees”. Even though our first two houses are several months away from completion, we are already being shown the real reasons why we are doing this.

You see, the first two Green Houses will be in the center of a new townhouse community called Arbor Ridge, in the suburb of Penfield. It’s a multi-generational community, but the majority of people who have purchased townhouses so far are over 55. And even though the Green Houses are just being framed, several different members of the community have already called to inquire if living at Arbor Ridge will raise the likelihood that they or their family members could receive consideration to move into our Green Houses in the future! Far from the “Not in my backyard” syndrome, people in the community are excited by this new approach to elder care.

Community Green Houses do more than provide high quality care and well-being. They are already creating aging in community, as even during construction their neighbors are seeing them as a viable place for meaningful life and continued engagement, should their needs increase.

Arbor Ridge

Soon-to-be Green House

Forty Years of Rochester Folk

Last night, Rochester’s Golden Link Folk Singing Society (http://www.goldenlink.org) celebrated its 40th birthday with a “Presidents’ Concert”. The club began in 1971, in the waning days of the folk music boom, as a group of stalwart music lovers began to gather at each others’ houses on a regular basis to share songs.

This became a club, which eventually secured 501c(3) status and a church basement for weekly song swaps. They also began hosting touring musicians in a concert series and started a yearly festival named Turtle Hill. The festival has remained small in scale, but traveling performers love the intimate setting and the sophisticated audience who creates some of the best sing-along harmonies around.

I first wandered in around 1981, making the journey to the singarounds with my friend Craig Hohm when the demands of medical residency weren’t too great. I helped out with the Festival in 1988 and then co-coordinated it with my “Local Folkel Records” co-owner Joe LaMay in 1989, 1990 and 1991.

A lot has happened musically in the club’s four decades, much of which I was happy to have witnessed. I met Canadian legend Stan Rogers and learned a guitar tuning from him, not long before his untimely death in the tragic 1983 Air Canada fire in Cincinnati. I met some of my dearest friends through the club when they came to perform, particularly Anne Hills, Cindy Mangsen, Steve Gillette and Priscilla Herdman.

Stan Rogers

I helped get Herdman, Hills and Mangsen together for the first time in what would be a very successful collaboration that produced three CDs and many concerts across the US and Canada. And the same festival (in 1988) brought Steve and Cindy together, and they became married not long after that. It was also the last small festival appearance for Shawn Colvin before her Columbia Records deal launched her career to new heights.

Herdman, Hills & Mangsen

Steve Gillette and Cindy Mangsen

Shawn Colvin

Another occasional denizen of the club in the late 1980’s was a diminutive teenager from Buffalo with a big guitar and a bigger voice, who would hitch a ride over and play at some of our open mike nights. Her name was Ani Difranco.

Ani Difranco

On Saturday night, 15 of the club’s 21 presidents, current and past, were on hand to share songs and memories. Afterward, as always, instruments were unpacked and a jam session went late into the night. That’s only typical, and was predicted by the words of the closing Greg Brown song from the concert:

There’s a ring around the moon.
Long, long time till day,
Play me one more tune,
Please don’t go away.

Happy 40th birthday, and many more.

Top: Bob Olyslager, Michael O'Shea, Bill Gamble. Middle: Gail Davis, Joe LaMay, Allen Hopkins, Ellen Smith, Julia Day, Dave Shaver, Bob Taylor, Tom Taylor. Bottom: Mitzi Collins, B. J. Cunningham, Barbara Jablonski, and Donna Russell

A Changing Melody

March 26th kicked off the latest edition of Alzheimer’s Disease International in Toronto with “A Changing Melody”: a pre-conference event that celebrates people living with dementia with an all-day symposium that is largely planned and presented by people with various forms of the disorder.

After a musical introduction, the event was kicked off by Australian author Christine Bryden, whose book “Dancing with Dementia” was a central influence on my own writing and thinking. Christine was diagnosed with dementia at age 46. Now 16 years on, she is again traveling and enlightening the world with her insights.

Christine kicked off a session that dealt with “Coping with Stigma and Fear”. In a rather pointed comment, she remarked:

“What causes the stigma and fear? It’s the stereotype of dementia: someone who cannot understand, remembers nothing, and is unaware of what is happening around them. This stereotype tugs at the heartstrings and loosens the purse strings, so is used in seeking funds for research, support and services. It’s a Catch 22, because Alzheimer’s associations promote our image as non-persons, and make the stigma worse.”

Christine Bryden

The symposium had each segment punctuated by small group discussions, as tables mixed with people living with dementia, their families and professionals grappled with the issues.

At our table, Canadian Jim Mann shared how he copes with the stigma and fear: He looks for “teachable moments”. Often, when traveling with a book about Alzheimer’s on his lap, a nearby passenger will ask him about it, assuming he is a doctor or some other care professional. When he explains the truth, he uses their surprise to educate them about the fact the people who have been diagnosed with dementia can continue to find meaningful work, as he does with his local Alzheimer’s chapter.

Jim Mann's "teachable moment"

Mary McKinlay gave a stirring talk about her life over the past five years with Alzheimer’s. She regaled the crowd with her dry wit and a wealth of advice about how she has enabled herself over the years.

She gave a description of problems with the shower that care partners far and wide should heed: “This morning ritual…seemed to be just too much input for my senses. The sound of the water, plus the water hitting my head and skin became more than I could handle. I began experimenting to find out how to make this an enjoyable activity again. Wearing ear plugs helped deaden the noise. And if I start the water running, then  get in the tub at the far end, away from the shower, I don’t have the force of the water hitting my body to contend with. I have a shower stool to sit on and I can extend one limb at a time under the water.”

The conference was designed with the needs of people living with dementia in mind. It was paced with plenty of breaks and alternated brief talks with small group interactions. Music punctuated the segments and the was a quiet room for those who needed a break from the stimulation.

Even the washrooms had simple, enabling reminders:

A truly inspiring day!

I’ll be posting more reflections of ADI this weekend at allenpower.wordpress.com.

Thursday Thoughts…

I’ll be heading north and west tomorrow; first by train to Toronto for the Changing Melody conference (of and by people living with dementia), then to speak at Alzheimer’s Disease International on Sunday. Monday I head west for talks in Edmonton and Saskatoon, winding up in Seattle to give a three-part intensive for their 26th Annual Regional Alzheimer’s Conference.

As I prepare to head out, our “Eden Quote of the Day” (posted by Susan Thomas, Care Partner Extraordinaire), is a quote from 20th century American commentator Alexander Woolcott: “There is no such thing in anyone’s life as an unimportant day.” Now on the surface, this sounds like a simple call to do our best and be present in our daily lives and work. But as usual, there is a nursing home aspect, and one for dementia as well.

Looking at people who live in nursing homes, this quote challenges us to remember that every day in each elder’s life should be as rich with meaningful engagement as possible. We need to remove the ageist attitude that says that just because people are old and functionally limited, that this kind of daily purpose is no longer important or attainable.

Such meaning may come from giving care to others in the living environment (human or otherwise), from having daily input into the life of the household, leading one’s own care decisions, engaging in activities that speak to one’s own values and history, and also having the opportunity to experience personal growth and self-actualization throughout one’s life.

Furthermore, this right must not be abdicated when a person lives with any form or degree of dementia. Engagement and empowerment can occur on all levels, with all functional or cognitive capacities. It is the job of long-term care providers to make their own days important, largely by keeping the elders’ days important as well. The primary tool to accomplish this is close, continuous relationships.

In my recent Tennessee sessions, Melanie Adair told the story of Kathryn, a 103-year-old woman with advancing dementia, who developed a close and meaningful reclationship with her primary aide, who was African-American. Not long before her death, Kathryn revealed to her young friend that she had been raised to fear and dislike people of color, and that through their friendship she had learned how very wrong this was. She had been praying for forgiveness for her lifelong attitude; and as a result of prayer and of sharing this with her friend, a great weight had been lifted from her soul. Not long after, Kathryn passed away, having achieved a new level of important personal growth after 103 years.

The sad epilogue is that at the funeral, her family eulogized her by saying that they would only talk about their mother of years past, because “she hasn’t been there recently–we lost her a long time ago.”

This family failed to see that every day was still important for their mother, and that age and infirmity do not halt one’s growth; only we and our attitudes can do that.

Antipsychotic Use in Denmark

During my last conference in Denmark, I learned of an interesting trend in antipsychotic use. After I quoted a 2003 Danish Medicines Agency report earlier in the week that showed a 28% prevalence of antipsychotic use in care homes, I was told that Denmark had been making a concerted effort to reduce antipsychotic use since then. And they have. But that’s not the whole story…

I heard a talk by Dr. Annette Lolk, who reviewed the use of psychotropic drugs in Denmark. Though the talk was in Danish, she knew I was coming, and was kind enough to translate most of her slides on a handout, so I could follow along. Using bar graphs that separated older Danes in 5-year cohorts, Dr. Lolk showed that overall antipsychotic use had dropped from 2005-2009 in every cohort except the 65-69 year-old group. The decreases ranged from about 16 – 22% in the various groups.

But despite an overall reduction in this class of drugs, there was a significant increase in the use of one particular drug: quetiapine (branded as Seroquel). The increase in quetiapine use during this period ranged from a 54% increase in 80-84 year-olds, to a 105% increase in those over 95 (!), and a whopping 149% increase in the 65-69 group (which probabaly explains why overall use did not decline in this youngest cohort).

To me, this phenomenon is probabaly best explained as a better marketing campaign. Seroquel has gotten a rep as a brand less likely to cause Parkinson-like stiffness as a side effect, so that the comfort level of its use has been raised. Some also claim it to be less sedating than other brands, although low doses are claimed to be paradoxically more sedating than higher ones, which also encourages higher initial doses.

But side effect profiles aside, this begs a larger question: If one believes, as I do, that the majority of distress in dementia comes from unmet needs and environmental mismatch eroding one’s well-being, then no drug solves the real problem, regardless of its safety profile. The fact that Seroquel use is rising even as we strive to reduce antipsychotic use shows that we still have a long way to go in shifting paradigms for enlightened care.

Denmark Conference #2

After attending the Denmark Eden Networking Days, I was invited to give two talks for a meeting of the National Knowledge Center for Dementia in Copenhagen on March 11th.

My opening talk was a general overview of my “experiential” approach to dementia. I was also asked to speak about the Green House model and how it is beneficial to people living with dementia.

This second talk gave me the opportunity to further explore the potential of small house models that also employ deep culture change principles in providing better lives for people with dementia. As I have found in talks about other considerations of the living environment, what is good for people living with dementia is good for all of us, and we do not need to segregate people by diagnosis to see the real benefits–quite the opposite.

I explained the benefits of the model by discussing the three types of transformation–personal, operational and physical–that typify the best care environments. In the case of dementia, the personal component is both intrapersonal (how we view people living with dementia) and interpersonal (how we relate and communicate).

The operational features are key, because no philosophy of care can take hold in an institution; there must be a pathway to operationalize the philosophy in a meaningful and sustainable manner.

To illustrate this, I chose the values of: close and continuous relationships, choice and control, opportunities to give care, variety and spontaneity, and meaning and purpose. I then showed how the model facilitates each of these.

I also discussed the well-being domains of: identity, growth, connectedness, security, autonomy, meaning and joy, with relation to the Green House.

I also got to meet Connie Møller, the new Spark of Life practitioner for Denmark:

Aase, Connie, AP and Karin

and to enjoy the hospitality of conference organizer Ane Eckermann, courtesy of the delicious La Glace Konditorei:

Ane, Eileen and a whole lot of calories!

To see a lot more photos of my trip, you are invited to go to:

http://www.flickr.com/photos/51634449@N02/sets/72157626186745815

I’ll be blogging further here, as well as at http://www.changingaging.org later this week.

Birkelund–Denmark’s Newest Eden Home

After the induction ceremony, we were all invited into a room that was decorated with the story of this marvelous home. Inside was a cornucopia of scrapbooks, photos, mementos, decorations and testimonials that were moving as well as inspirational for all of us.

Particularly moving were several of the posted photos, as they showed the power of real relationships. These photos included elders caring for each other in times of illness and death and for small children as well. One striking photo showed how the staff rallied to assist a woman with dementia who could not settle down and sleep in her room alone.

New to the Eden registry, yet light years ahead of so many homes in the world…

Eden Denmark, Day 2

After a hearty breakfast–which seemed to come very soon after the wonderful dinner the night before–we were launched into Day 2 with the Danish Eden song, sung in Danish, English and German (close approximations accepted).

After a local journalist spoke about intergenerational relationships, June spoke about the process of Eden registry and validation in the UK.

We were then treated to a group of high school students, who shared poems and songs they had written about their perspectives on aging and elderhood:

Another highlight of Day 2 was the induction of the Birkelund home into the Danish Eden registry, with elders and families in attendance:

AP with Birkelund's Eden leaders (Käthe, Lisbeth, Birthe)

I said goodbye with my own Eden song (co-written with my friend Anne Hills), before heading off to Odense to see the Hans Christian Andersen birthplace and museum.

More on Birkelund in my next post!