The Price of Privacy When It Comes to Dementia

—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.

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 experiences, and receive support from others as they go through their Parkinson’s journey.

In my decades-long career as a memory disorders specialist, I have found that one characteristic shared by patients with Alzheimer’s disease or other forms of dementia is a preference, at least in the early stages, for secrecy about the diagnosis.

After I informed a famous patient of her Alzheimer’s diagnosis, I handed her an informational brochure on memory loss.

Her husband promptly took it from her, folded it neatly, and hid it underneath his coat, saying “In case we bump into one of her fans in the elevator.” Perhaps more than other diseases, the desire for privacy is particularly strong for dementia , which is still viewed by many as a mental health disorder rather than a neurologic disease like Parkinson’s disease or ALS.

My patients and families typically limit the disclosure of the diagnosis on a need-to-know basis, and many choose to hide it till the end.

Doctors, clinics, and hospitals are complicit with this secrecy, with only around 50% of people with dementia having their diagnosis documented in their medical records.