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.
Saturday, October 8, 2011
Friday, October 7, 2011
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.
Thursday, October 6, 2011
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.