Our morning began with the poster session where we had a number of good conversations with people about what we’re doing in the Fox Valley region of Wisconsin to create a dementia friendly community. The day ended with a keynote address in which a British psychologist spoke about working toward a dementia friendly society. A question we need to consider further is how public policy to this end will benefit all persons, not just those whose lives are touched in various ways by dementia.
One session Susan attended later reminded her of the original impetus for our book; several people spoke about how friends drop away once the dementia diagnosis is received. This session was organized by the European Working Group of People with Dementia, which consists of 11 persons (from 11 countries) and their care partners. One 55-year old woman in the group from Czech Republic who has young onset Alzheimer’s spoke at an afternoon plenary session and reminded the audience never to forget the individual differences among persons with the diagnosis. Her talk was followed by one from a scientist working for the Innovative Medicines Initiative (Brussels, Belgium); she described the complex need to match prevention and treatment methods to individual needs and circumstances. She also reminded us of the fact that between 1998 and 2011, 101 drug trials for treating Alzheimer’s symptoms have failed; the last of the 5 drugs approved by the FDA for Alzheimer’s treatment was approved in 2003.
A brilliant Maltese psychiatrist now working in Australia talked about how dementia is not solely a cognitive problem but rather is accompanied by symptoms that may be more distressing than memory loss and confusion; these include delusions, hallucinations, depression, anxiety, irritability, agitation, and apathy. Although there’s a worldwide effort to dramatically reduce the prescription of anti-psychotic medications for people with dementia, we have been slow to optimize treatment and care for people with these characteristics. Here’s where psychosocial “interventions” and creative engagement programs can have a huge impact, though the medical community always wants to see the evidence for their legitimacy, evidence that cannot always be obtained through the same methods used to test drugs (e.g., randomized control trials). However, Alzheimer Europe is supporting a group of scientists doing good research on psychosocial programs; they are rigorously examining studies to determine which ones show the most promise. On the one hand, Susan was pleased to hear him say we need more psychologists and counselors trained to work with people with dementia and their care partners, but on the other hand, she gets discouraged when she considers how few training programs exist to do this.
After a few more addresses on assistive technologies and designs for homes where people with dementia can thrive, the last two speeches of the day dealt with the persistence of the self through the course of dementia, and the creative work going on in the U.K. to promote dementia friendly initiatives. These range from cupcake creation programs to a University of Bournemouth program where people with dementia are doing marine archeology by helping scientists collect, clean, and identify objects. (Note to academic friends: Check out the work of Althea Innes.)
On December 11, 2013, the G8 is meeting in London. The British Prime Minister has declared the topic of the meeting to be dementia friendly societies. Let’s hope the world cooperates by having no more outbreaks of war, economic disaster, etc. Try to imagine Putin and Obama sitting down to talk about how their countries are affected by the growing number of persons diagnosed with dementia. Let’s also hope the conversation doesn’t simply focus on defining this as a burden to economies.
Our next post will address major themes that emerged in the course of the conference, and how they speak to the work being done by the Fox Valley Memory Project. But first we badly need some sleep. Personal note: we had one of the Twenty Noteworthy Meals of our lives at a nearby Mediterranean seafood restaurant: we knew we were in good hands when the chef stopped by our table and told us to ignore the menu and allow him to take care of us with specially prepared mussels, scallops, and three kinds of grilled fish (along with grilled veggies). “I have no butter at all in my kitchen,” he proudly exclaimed. We look forward to these next few post-conference days in Malta. Fun fact: Malta is the most densely populated country in Europe!