Monday, October 14, 2013

Reflections on the 2013 Alzheimer Europe conference


John and I have agreed on topics for overview blogging about the conference.  We work very differently.  Ever the academic, I took 27 pages of notes (complete with references that I want to track down when we get home) and he ended up with 1 page.  While I seek data, he seeks stories and while I construct themes from data (qualitative researchers, you know what I’m talking about), he reflects philosophically about ideas.

Our four concluding blogs will be organized like this.  I’ll briefly describe a few national and regional dementia friendly community initiatives.  I’ve had to be selective because I don’t want this post to be overly long.  Later, I’ll talk about five big themes I observed underlying the plenary speeches, session lectures, and posters.  John will relate one story as he heard it from a man with Lewy Body Disease, and he will reflect on what he envisions as “dementia friendly on the ground.” 

National Efforts

1.  Belgium has a program to develop dementia friendly cities.  Persons with dementia and their care partners are integral to the planning and execution of the program.  Youth organizations also participate.  One stated goal is to ensure the “right to be different.”  Such tolerance will benefit not only persons living with dementia but should also generalize to people with mental health problems, developmental disabilities, and other socially marginalized characteristics.

2.  “On October 20, 2013, everybody in Norway will know what dementia is.”  This audacious statement appears on a pamphlet describing how every year since the 1970s, the Norwegian National Broadcasting system has run a telethon.  This year, the focus will be on dementia.  In a country with a population of 5 million, over 100,000 volunteers will visit every home in Norway (about 2.2 million) within 2 hours to collect funds and distribute information in conjunction with the 8-hour telethon.  The program has three goals:  (1) to encourage activities to improve quality of life, especially through volunteers serving as “activity friends,” (2) to increase public knowledge and create meeting places for people with dementia, and (3) to support research on prevention and treatment.

3.  In Japan, over 4 million people have taken a 90-minute training on awareness that dementia is a medical condition affecting may people.  Many of these trainees are young and have signed on to be “dementia friends”; some recent national research has shown a drop in stigma.  Interestingly, the Japanese have paid particular attention to men caring for their wives or mothers.  They observed that men in that country get embarrassed about having to do things like take a woman to a public toilet, or to buy her underwear or other personal items.  Thus, they’ve promoted a widely recognizable pin that says merely “I am caring now” and is intended to elicit compassion and help from strangers.

4.  In Great Britain, a similar effort is underway to create a cadre of “dementia friends” and “dementia champions” (persons who train others).  The Prime Minister, David Cameron, has been a key advocate, and he’s the one responsible for organizing the G8 summit in London that will address dementia (we hope) in December, 2013. 

Regional Efforts

1.  People in Motherwell, Scotland, have developed an excellent small folded brochure the size of a business card that contains 14 practical suggestions for business owners to make their shops or services dementia friendly.   The organizing idea for this project is that “no one should have to deal with dementia alone.”

2.  In Huddinge, Sweden, researchers are studying “zebra crossings” for pedestrians with dementia.  Even if you don’t have dementia, when trying to do this, you need to process so much information quickly.  Making street crossing safer for people with dementia will make them safer for all. 

3.  The Alzheimer’s Society of Ireland is awarding grants to 8 communities for 3 years who will raise awareness about dementia, and will develop arts and cultural activities, educational and intergenerational activities, volunteer opportunities, and access and participation in sports and leisure activities.  They will also have to show how they are promoting dementia tourism.  Throughout the planning and implementation of these programs, communities will have to consult with persons with dementia regarding these adaptations of the social and physical environment.

4.  In Vienna, Austria, pharmacies are collaborating on how they can be more dementia friendly. 

5.  The British organization, Dementia Adventure, has recently developed an outdoor activity for persons with dementia at a large park by a loch in Scotland

6.  The ACT on Alzheimer’s organization (www.ACTonALZ.org) in Minnesota has a free toolkit available online for communities to assess how dementia capable they are and how they might improve physical and social environments to raise quality of life for people living with dementia.

7.  And finally, I need to include what’s happening in the Fox Valley region of Wisconsin, where the Fox Valley Memory Project has a multi-faceted approach to meeting the changing needs of persons living with dementia (www.foxvalleymemoryproject.org).  John and I presented a poster outlining our various programs and services.  

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