The Price of Privacy When It Comes to Dementia

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. When the actor Michael J. Fox announced almost three decades ago that he had been diagnosed with early-stage Parkinson’s disease, a bright spotlight was shone on the then relatively unknown neurologic disease. His namesake foundation has since raised over $3 billion for Parkinson’s disease research, his testimony to the U.S. Congress helped boost federal funding for neurologic and stem cell research, and his patient advocacy empowered persons with Parkinson’s to come forward, share their experi...