Catching up on me and AD and related disorders

Catching up on me and AD and related disorders

I've been too, too busy at the desk and also on the road – all of it trying to make sense of Alzheimers disease, dementia and the aging brain/mind. Some key events included attending the Alzheimer's Association International Congress (AAIC) in Copenhagen, Denmark. The image is the hotel adjacent to the conference center at dusk, a structural study in post-post modern design.

Sun up before 6 AM and sun set long after 10 PM. I stayed at a hotel near central station; just across the street was Copenhagen's "most popular All Nude Revue dance hall." I skipped that for an indoor pool complex near the hotel that featured a 100 meter ovular lap pool, allowing me to swim in an endless loop for an hour or more, great training for July's 2 mile Swim-the-Length-of-13th-Lake Race. 

Big news out of AAIC? Lots of biomarker data. Lots of amyloid and tau imaging data. Bottom line - the brain is being made visible. The challenges include sorting out disease from health, and sorting out the emerging variants of what we once thought we single disease, such as the cortical versus temporal limbic presentations of Alzheimers disease. The field now waits for the results of clinical trials testing drugs in cognitively normal person at who carry a gene or biomarker that raises their risk of developing cognitive decline.

I presented two posters – one on the process we developed to disclose amyloid imaging to cognitively normal research participants and another on how cognitive impairment and mood independently drive the perception of cognitive symptoms.

My team has been busy getting the SOKRATES study up and running. Our Study of Knowledge and Reactions to Amyloid Testing is a companion study to the A4 study. We will interview a sample of participants in A4 – older adults who are cognitively normal but have elevated amyloid and are on study drug to test whether the drug slows cognitive decline – and also a sample of older adults who do not have elevated amyloid and are followed annually. Our goal is to understand the illness experience of these two groups – how do they make sense of having elevated amyloid, what do they tell people, who do they talk to? Truly, these are people living the revolution of the aging mind.

Took time off from the conference to write a review of Stanley Prusiner's autobiography, Madness and Memory, which will come out this fall in the Pennsylvania Gazette. He narrates his life and work to discover the cause of diseases like CJD, work that led to the discovery of the prion. He describes his work as a race, but his story is more like a quest or war amongst the titans.

Flew to Rochester, New York for a day to film a show on Alzheimer’s for Second Opinion. They had me comment on a case of a woman who seeks early diagnosis. We engaged the ethics of risk. 

Back at Penn, been working with Barbara Overholser and a team of summer interns to get the website MakingsenseofAlzheimers.org up and ready for its Fall 2014 premiere. Check out our space where we let people open up about this disease of the brain, but problem of the mind.