The Price of Privacy When It Comes to Dementia
The article discusses the ethical dilemma public figures face when deciding whether to disclose a dementia or Alzheimer's diagnosis. It contrasts those who go public to raise awareness with those who prefer privacy, noting the impact of advocacy on research funding.
Why it matters
It addresses the intersection of personal health privacy and the societal benefits of public advocacy for neurodegenerative diseases.
—Richard Drury—Getty Images Ronald Reagan , Charlton Heston , Tony Bennett , and Danny Glover have something in common. So do Margaret Thatcher , Norman Rockwell , and Sean Connery .
All had been afflicted with Alzheimer's or dementia—the progressive neurologic disease characterized by memory and functional loss—but with an important difference. The first group chose to make a public announcement of their diagnosis during their life, and the second chose to keep their dementia diagnosis private, their condition revealed by their survivors only after their death.
Maintaining the confidentiality of one's health information is a fundamental right, but when a public figure receives a life-limiting diagnosis, does disclosure matter? Some choose to do so as a form of farewell to their supporters and fans, others to raise public awareness of the illness that has afflicted them.
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