The Price of Privacy When It Comes to Dementia

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.

Since dementia tends to begin later in one’s life, many simply fade into retirement and anonymity, which inevitably leads to social isolation and misleading others of their whereabouts. Interestingly, the shame associated with dementia is not typically shared by people afflicted with other neurological disorders such as multiple sclerosis, stroke, or ALS.

When singer Celine Dion was diagnosed with the rare, progressive neurologic condition called stiff-person syndrome, she came forward with a message to her fans, putting an end to speculation about the mystery illness that caused her to cancel a series of performances. In her documentary, she bravely allowed a glimpse of the painful muscle spasm she experiences daily. Through her foundation, Dion personally donated millions of dollars towards research into the rare disease that afflicts fewer than 5,000 people in the United States.

There are over 57 million people with dementia globally, with nearly 10 million new cases diagnosed every year. In 2050, an estimated 152 million people will have Alzheimer’s disease or other forms of dementia. In the United States alone, there are currently 7.4 million people age 65 or older living with dementia. While many important advances have been made in research on prevention, early diagnosis, and treatment of Alzheimer’s, many more of its mysteries need to be unraveled and a cure remains elusive.

While I understand and respect people’s desires for privacy, the potential upside of destigmatizing dementia are significant. If every person, famous or not, whose life has been touched by dementia—in a spouse, parent, friend, or in themselves—were willing to share their stories and advocate for more research funding, better public policies, and greater community and caregiving support, perhaps the stigma and shame associated with this neurologic disease would be eased, and we would be closer to finding a cure.

The desire for secrecy of a dementia diagnosis can sometimes have serious consequences. The actor Gene Hackman was living with dementia in private for years. The public became aware of his plight only when he was found deceased inside his home after his wife, who was his primary caregiver, unexpectedly died before him. Interviews with their neighbors painted a picture of a private and secretive couple who were rarely seen outside their home. It was believed that Mr. Hackman died alone after his wife and primary caregiver passed. Left to fend for himself, he was unable to provide for his basic needs: food, water, medications.

It took a brain autopsy for Robin Williams to get diagnosed with Lewy body disease, a form of dementia that produces visual hallucinations, sleep disturbance, and tremors. For years, his condition was misdiagnosed as depression and Parkinson’s disease, as his doctors were unable to connect the constellation of classic symptoms to recognize that dementia has set in. After Williams died by suicide, his widow Susan Schneider Williams became a public advocate for Lewy body awareness, putting a public face to a disease that many have not even heard of.

Most people who are diagnosed with Alzheimer’s disease or other forms of dementia are not public figures, but like these famous people, they need to decide the price they are willing to pay for privacy. Even in the early stages of the disease, many decide to withdraw from their social circles, cease the activities they enjoy, and retreat to a life that is much too small. A big part of this unfortunate decision stems from the shame that comes with the diagnosis of dementia, which is often viewed not just as a loss of memory, but of intellect, social status, and identity.

So pervasive is the secrecy surrounding a dementia diagnosis that I now ask every family caregiver of my patient a telling question: If you became unavailable, who would take care of your loved one? Invariably, they declare that they are not going anywhere, that they will never leave their husband, wife, parent, or friend, so I ask a more direct question: If you were hit by a Mack truck on your way home today, who will feed, administer medication, and keep your loved one safe tonight?

If they provide anything other than a reassuring response, I counsel them on the importance of having a back-up plan: a relative, friend, or neighbor who can check in on the person with memory impairment to make sure they are safe. I remind them of the benefits of socialization and maintaining relationships with others in people with dementia. I tell them that even with cognitive changes, there is still a lot of life left to be lived—new places to see, new people to meet, new experiences to enjoy.

I reassure them that whether they decide on privacy or disclosure, we will be there to support them, minimize dementia’s impact on their daily lives, and provide comfort when we can.