As more Alzheimer’s disease (AD) prevention trials require participants to undergo genetic or biomarker testing in order to enroll, researchers must address how to disclose the results of tests that foreshadow whether a healthy person may develop AD dementia.
At the Alzheimer’s Association International Conference (AAIC) held July 22-28 in Toronto, researchers and clinicians discussed how to approach these difficult conversations.
“Understanding how people react to these test results is as important as understanding their response to a drug,” Dr. Jason Karlawish, co-director of the Penn Memory Center, told Alzforum. “The future practice will be ‘get a test, get a drug,’ and we need to understand the combined impact of both of those interventions.”
At AAIC, Karlawish discussed the Study of Knowledge and Reactions to Amyloid Testing (SOKRATES), which studies how learning the results of an amyloid scan impacts participants’ daily lives and relationships. SOKRATES is rooted in the A4 study, a prevention trial that requires cognitively normal adults ages 65 to 80 to undergo a PET scan that measures brain amyloid levels. Amyloid is one of the two pathologies that are thought to cause Alzheimer’s disease dementia. The other is tangled tau protein, and researchers are working on brain scans to measure this too.
Although studies suggest participants in AD research studies are curious to know their “genetic or biomarker status” and are psychologically unaffected by the results, these data were collected primarily from persons in registries or middle aged-adults with a family history of the disease, characteristics that suggest they are familiar with AD and that its onset is as many as two or three decades away. Studies like SOKRATES will examine persons whose age places them far closer to the age of onset of AD and it is also measuring the experience of stigma, a to date largely unstudied impact of learning one is at heightened risk of developing AD dementia.
Other topics addressed at AAIC included how to disclose test results to those with mild cognitive impairment, and risk disclosure in other countries.