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.