Response to the National Plan to Address Alzheimer's Disease

Our publisher, Johns Hopkins University Press, invited us to write a "guest post" on their JHU Press Blog in response to the much-discussed and debated National Plan. It can be found here.

Pamphlet for congregations is now available

What began as a brief hiatus from posting on this blog turned into a lengthy one – it is high time for us to become active again, as we have a great deal to share. Our book will be going into a second printing, but unfortunately there are no current plans for a paperback edition, so it remains more expensive to purchase than we would wish. Because of this (and because some folks report that they found some portions of the book a bit challenging to read), John recently wrote a short pamphlet titled Aging, Dementia, and the Faith Community: Continuing the Journey of Friendship. As the title suggests, it is designed as a resource for congregations. It is lighter on “theory” than our book, focusing largely on practical ways in which congregations can include and support members journeying into memory loss and their care partners. It also incorporates some of the work we have been doing since the book was published, particularly on establishing community programs for persons with dementia, their care partners and their friends. Because we want to make this resource available to as many persons and congregations as possible, John has arranged for the Ekklesia Project to make it available as a free download on their website. It can be found here. Printed copies are available in quantity from the publisher for one dollar – please contact us if you would like to order copies. We look forward to your comments!

A few thoughts on the Alzheimer Europe Conference

1. It was marvelous to experience this time with 500 people of many different nationalities who share a common commitment to serving persons diagnosed with dementia and their care-givers, along with those doing the research that may one day reduce its impact on quality of life. It was wonderfully refreshing to note that “research” and “service” are not the either/or choice (or competitors for funding) that they often seem to be in the USA. We attended a most impressive lecture on research about potential drugs that will work “upstream,” meaning that they would address the disease process many years before symptomology appears (once a person is symptomatic, existing pharmacological interventions are only of modest help, and there is scant hope that this will change; once the brain is severely damaged, the damage is permanent). But the presenter, a brilliant Polish scientist, argued passionately that even when/if such drugs are developed, the need for psychosocial interventions will be as great as ever. Clearly the need is for researchers, medical professionals, social service providers, care-givers and persons with the diagnosis to work as a mutually supportive team. Folks in Europe seem to understand this, and we have much to learn from them.

2. We were deeply moved by the many young adults who are passionately committed to providing various services to persons with dementia and their carers. Avril from Dublin has trained volunteer mediators to work with families having difficulty in reaching consensus on the forms of care a loved one should receive. Monica from Warsaw gives herself to simply being present to persons with dementia through an organization called “Little Brothers, Friends of the Elderly.” We met people who organize extended outings for persons with dementia in Germany, others who run a residential “folk high school” (which includes lectures by distinguished presenters) in Norway, and people who oversee all kinds of cafes and day programs.

3. Although there were many people present with impressive credentials there was no “pecking order;” rather there was a spirit of community with a common purpose. Distinguished psychiatrists and senior scientists listened attentively to presentations offered by nervous young research assistants. Persons diagnosed with dementia shared the podium with physicians and scientists. People were here to learn from one another. Our own presentations were well received (we were among a small handful of people from the USA.), and people sought us out to offer their gratitude and ask questions. We collected many cards and email addresses, and are all but certain we will reconnect with many of our new friends.

4. It was touching to learn that so many people automatically assumed that the USA is far ahead of the rest of the world in research, treatment, social services, etc. The sad truth is that the opposite is true. The Emilia-Romagna region of Italy (population 4.4 million)alone has 53 dementia centers committed to providing “a correct and early diagnosis.” Our immediate region of Wisconsin (the Fox Valley) has one center. Most European cities and towns provide multiple day service centers, various café programs, etc. We offer almost nothing, allowing the burden to fall solely on the person with dementia and his or her immediate family.

5. We heard a talk by Glenn Rees, the CEO of Alzheimer’s Australia. He described their core mission as providing information, education, support, and advocacy. In recent years, they have made the decision to emphasize changing the health care system in Australia; they believe this will help far more people than trying to offer direct services to a small proportion of the population. Their vision is “for a society committed to the prevention of dementia, while valuing and supporting people living with dementia.” They have a coordinated campaign to “Fight Dementia” by encouraging the government to pay more attention to consumer-directed care, particularly respite services. We asked him what he thinks of the goal to “cure dementia” and he said his organization never uses the word “cure.” Australia is obviously a long way from Europe, and others journeyed here from South Korea, Northern Africa, etc. The American Alzheimer’s Association was not represented at all.

6. There were many presentations about diagnosing AD and other dementias. Only about one third of persons with dementia are ever properly diagnosed. Persons with dementia described experiences in which their general care physician dismissed their concerns, responding to their reports of forgetfulness and confusion with the suggestion that they “needed a bit of rest.” The average time between the appearance of symptoms and receiving a proper diagnosis varies widely from country to country, but averages about two years. Those are “lost years” in terms of receiving information, support and guidance. General practitioners must become better educated about dementia and there need to be many more diagnostic and assessment centers to which they can direct their patients.

7. One of themes to be addressed at next year’s conference in Vienna (which we will attend only if a rich uncle we do not know about dies and leaves us a large gift) is “Dementia Friendly Communities.” We hope that in the next year we can play a small start in beginning to build such communities.

Dementia: The grand challenge of the next 50 years

The Alzheimer Europe conference officially opened today with a lecture by a Professor of Mental Health and Ageing at King's College, London. He firmly stated that quality of life can be good at any stage of dementia, although to get to that goal, much work must be done. About 35.6 million people in the world now have dementia, a number that will double in 30 years (or, more pessimistically, according to a Delphi study done in 2005, it will be 81.1 million). A Polish neurologist followed up that lecture by arguing that we need to create a dementia-friendly society, although unfortunately, many people never get the diagnosis and either live in blissful ignorance, or suffer the "slings and arrows" of memory loss, never accessing the good programs in place to support them and the people who care about them. The second plenary session featured a German psychiatrist who offered an excellent "Dementia Microbiology 101" lecture with some of the best designed PowerPoint slides we've ever seen. He was realistic about the slow development of novel treatments to neutralize the events occurring upstream in the pathological cascade, events that now go unnoticed for 20 or more years before accumulated damage finally is expressed in forgetfulness and functional change. His last statement was heartening: instead of pitting pharmacological against psychosocial treatments (often somewhat pejoratively called "non-pharmacological") he firmly asserted that new drug treatments (e.g., immunization to build up antibodies against beta amyloid) will increase the need for psychosocial treatments as people will live longer with milder symptoms. A Polish neurologist followed that lecture with one on the genetics of Alzheimer's (delivered in Polish but translated through our headsets). The final plenary session of the morning by a Dutch sociologist addressed effective psychosocial interventions. She ended her talk with a Chinese proverb: We cannot prevent that birds of sorrow fly over, but we can prevent that they build nests in our hair.

We had a delightful (free) and delicious lunch with 4 people from Ireland, 2 young Poles, and two women from Turkey. Our lively table conversation careened through a number of topics. We still have not met anyone from the US.

We split up to attend different parallel sessions in the afternoon, coming away from all of them with renewed respect for the creative work being done in many countries to improve quality of life for people living with dementia and those who care for them. Both the morning and afternoon sessions featured coffee breaks with many tempting sweets and enjoyable conversations. In all, each of us heard 10 different presentations in the afternoon, leaving us impressed and yes, a bit tired. A quiet dinner for two in the hotel restaurant that serves some of the best food we've ever had in a hotel restaurant gave us a chance to review the day and anticipate what will come tomorrow.

The international language of dementia

We have now spent two full days in Warsaw, Poland, and have filled them with a variety of activities. On the first morning, we walked to a large, upscale mall where we purchased an ethernet adaptor for our laptop at the iSpot (Polish Apple Store). [When we heard that the world is grieving the death of Steve Jobs today, we wondered whether there was some kind of memorial at the store in Warsaw.] In the afternoon, a doctoral student who had just handed in her dissertation met us at our hotel and took us on the tram to the University of Warsaw where we gave a brief talk to students enrolled in a 5-year BS/MS program in psychology, taught in English. This program attracts students from all over the world.



Today we visited an adult day program and a nursing home built in 2010. In our group were two people from France, one from Germany, and two Poles, one who volunteers with the Polish Alzheimer's Society and one who's a geriatrician. The international language of dementia is spoken by professionals from many countries devoting their energies to the lives of people living with dementia (people with the diagnosis and their carers).

The day program shares space in a older building with a similar program for adults with psychiatric challenges, although the two groups do not interact. It serves one "district" of Warsaw. The director thinks that with its capacity of 12, it is more than adequate for the district's needs, but the geriatrician escorting us believes that the need is several times greater. Much of what we saw was familiar from our time in similar facilities in the U.S. and U.K. - creative engagement, warm support from volunteers and staff, etc. We quickly learned that it is easier for us to communicate effectively with persons with dementia than with those who don't have dementia but who speak Polish, German, French, etc.

After a quick stop at "the best bakery in Warsaw," we moved on to the nursing home. It is one of 14 owned and run by the city of Warsaw, the newest and the only one entirely devoted to persons with dementia. The building is striking in many ways - modern, architecturally dramatic, "green" certified, etc. It currently serves 90 residents. When the former nursing home building next door is renovated, it will serve 120 plus another 30 in day care. (The city has not yet gotten its act together on that part of the mission, so a wonderful day care facility is currently underutilized). We were amazed to see the large number of private spacious offices for psychologists, social workers, and other professional staff. We saw the residents' dining areas (with table cloths and centerpieces on each table), the single and double occupancy rooms (each with a bathroom that includes a shower that can be used by people in wheelchairs), a beautiful sun filled chapel, several gardens and patios, and rooms for hydrotherapy, physical exercise, massage, light therapy, arts/crafts, "daily living" (with a small kitchen where people can cook things not prepared by the main kitchen) and relaxation (a room for people to rest in sunshine)--and of course, a hair salon where all residents go twice a week. For all this, people pay 70% of their pension (whatever it is); it costs 5000 zlotys/month (about $1500); if they can afford it, families are asked to kick in 400 zlotys/month toward the total. Our pictures here show the GLASS staircase (viewed from the ground floor looking up at a painting on a skylight) that people with dementia seem to have little trouble negotiating (there are also a lot of elevators) and the relaxation room. We had a long discussion with the director (ably translated by the geriatrician) who's worked at the nursing home since 1975. He's justifiably proud of this new building and the programs they're offering to 90 residents of Warsaw living well with forgetfulness.

Article in Crosscut references our book

Tony Robinson is a columnist for Crosscut, an on-line newspaper for the city of Seattle. He has written a fine piece on our fear of dementia, making reference to our book. Read it here.

“Memory Café Meets Here Today”

The sign outside the Baptist church on a hill leading down to the port of Falmouth announced the memory café. We arrived about a half hour early, in time to help the volunteers set up tables and chairs in a large room conveniently located by the kitchen. This bright room has many windows and importantly, a cupboard where volunteers can store some of their café supplies.

In England, Rotarians have organized a group called “REPoD” which stands for “Rotarians Easing Problems of Dementia.” About a year before our trip, we discovered that REPoD published an online pamphlet giving much useful information about setting up a Memory Café. Several retired men belonging to Rotary volunteer at the Falmouth café, along with a number of women, including the wife of one Rotarian who’s active in her local Lions Club. (The two of them later treated us to a delicious dinner at a classic pub.) These people were bustling about preparing for the arrival of participants.

Participants seemed eager to tell us about why they came to the café. One woman had taken three buses to get to Falmouth (and was grateful when someone offered her a ride home after the café ended). Another couple was there for the first time; the wife’s mom usually lives with her other daughter in another part of the country, but the couple was giving her a two week respite time and thought it would be a good idea to try coming to Memory Café. The mom seemed to enjoy herself and settled into the rhythm of the afternoon. This was the first café where we observed adult children present with parents.

One woman was recently widowed when her husband finally succumbed to a long-standing diagnosis of Alzheimer’s disease but, though nearly blind, she busily moved about helping other participants with the main activity of the day which was the creation and decoration of memory boxes. (Interestingly, at the cafés we visited, people referred far more often to dementia or “memory problems” than to Alzheimer’s disease.) Another woman came with her little dog who settled in contentedly beneath one of the tables.

Amazing to us was the participation of a local geriatric psychiatrist who treats many of the persons with dementia who come to the café. She was there with her son who’s about 8 years old and while she doesn’t come to all café gatherings, many participants seemed to know her. She had trained the volunteers, giving them information about forms and symptoms of dementia.

In all, there were about 35 people in that church social hall; as with all the cafés we visited, it was often hard to differentiate carers, carees, and volunteers. This “softening of categories” is central to the Memory Café experience: labels are erased and everyone together simply enjoys an afternoon of socializing and fun. Here’s what the Falmouth Memory Café’s brochure says about this: “You will have gathered that everyone is very friendly, relaxed, and welcoming. We are all equal and are treated as such. We respect each other’s abilities; at the same time we offer each other any help that may be needed from time to time with empathy and understanding. We usually have one or more professionals from the health care service on hand if a confidential chat is needed.”



When participants enter the room, they pass by Joan’s table. Joan has problems with her feet so can’t move around a lot, but she has the important role of giving out name tags (on lanyards) and making a list of participants’ first names. She said they tried name tags with safety pins but they were too hard to manipulate for some participants. Joan also keeps track of the notecards that record participants’ names, names of persons to contact in case of emergency, and health information.

The lotteries and a bit of fund-raising enabled the volunteer leaders of the café to purchase games, puzzles, and “sticky darts.” They had borrowed “sticky darts” for an earlier gathering and it had been such a hit that they decided to use some of their limited funds to purchase their own “sticky darts.” This is a large padded circle, larger than the usual dartboard, which hangs over a door; it has Velcro patches representing different point values, and people throw tennis-balls with Velcro at them. This was especially fun for several of the men who got into a rousing “sticky dart” competition for points. A first-time attendee, a man with very advanced vascular dementia, took great pride in being the day’s “champion.”

The energetic volunteer “activities lady” (the member of the Lions Club who later hosted us at the pub) had a veritable three-ring circus going at times. People could engage in a variety of activities, including word searches, making the memory boxes, and answering quiz questions. Every now and then, she’d ring a bell to get people’s attention. She maintains several notebooks constantly replenished with potential activities for the group to enjoy, and is always ready to fill in a lull of even a few minutes. By 2:30 everyone had assembled and she announced it was time for the “welcoming song.” At 3:00, the tea was ready. This café serves “egg and cress sandwiches” (the choice of sandwiches, like many other components of the café, was “democratically chosen”), cakes, coffee, and of course, tea. Around 4:00, the café closed with a departing song.

The spirit of fun and friendship pervades the two hour gathering. The volunteers move around, helping if needed, serving the tea (using real cups and plates), and stopping to chat with various participants. Joan told one story that exemplifies the gentle, welcoming spirit of the Memory Café. Several months ago, a woman brought her husband. He came to the door, heard the chatter in the room, saw all the people at the tables and turned around and said he didn’t want to come. Joan told his wife to go and sit by the door until he felt ready to come in. They did that and in about 15 minutes, they returned. They’ve been coming ever since.