We all have Alzheimer's....

The April issue of Health Affairs, is dedicated to Alzheimer’s disease. It’s a thorough and thoughtful set of articles edited by Darmouth’s Julie Bynum, MD.

AlzForum covered the press briefing.

And on April 21st, I spoke with WHYY's Marty Moss-Coane on her show Radio Times about the ethics of predictive testing for Alzheimer's disease.

I have two pieces in the issue. “How are we going to live with Alzheimer’s disease?” reviews the ethical issues patients and their families encounter. I examine about the challenges of decision making, the need to foster caregiving and living with the brain at risk with particular attention to proposing steps policy makers should take.

  • Prepare legal, banking and financial service providers to be able to competently assess an individual's decision-making ability. Studies show that Alzheimer's patients - even at mild and moderate stages of the disease - often believe they are more capable at making decisions than their caregivers and physicians see. While patients may be able to express a choice, they may have impairments in their ability to understand and appreciate how an intervention could impact them.
  • Caregivers of Alzheimer's patients should be offered or even prescribed to attend caregiver training, just as nutritional consultations and education are part of routine diabetes care.
  • Electronic Medical Records (EMRs) should be modified to provide access to caregivers and record their roles.
  • Hospice care should be aligned with goals of care for patients with advanced dementia, rather than waiting until the last 6-months of life as currently required for insurance coverage.
  • Prediction models and treatment algorithms will need to be developed as "biomarker positive" people are identified to have a brain at risk before symptoms emerge.
  • Legal reforms should be sought to minimize discrimination in employment and insurability as people are deemed at risk in pre-clinical stages. 

I conclude with this point: "Whether as patients or as caregivers, we all have Alzheimer's disease. The question we must engage with is, ‘How should we live with it?’"

I spoke with WTOP’s Dimitri Sotis about the essay and about Alzheimer’s disease. You can listen to the interview here. He starts off asking me to explain how it is that “we all have Alzheimer’s disease.”

I also have a review of Margaret Lock’s new book “The Alzheimer Conundrum” (Princeton U Press, 2014). Lock, a medical anthropologist, surveys recent event in Alzheimer’s science to reach the provocative conclusion that the disease is not a distinct category but a problem entangled in aging. The result, she argues, is a need to broaden our current one molecule at a time approach to engage the social and environmental factors that contribute to brain again.

 

More on this topic from my co-author Jaylyne Arias -- we published an essay in Neurology that examines the lack of legal protections for persons with Alzheimer's biomarkers -- has NeuroEthics Women Leaders blog post on this topic.

AARP Bulletin has a story on the ethical challenges of Alzheimer's biomarkers.