This story was updated on March 7, 2019.
The day she left the neurologist with a firm diagnosis of early-onset dementia, she told nobody.
Not her husband, who had been on her case about her forgetfulness for a while. Not her adult children, who live in other states and thought their father’s carping was standard-issue marital bickering. And certainly not her friends or colleagues at the university where she teaches, who she feared might immediately treat her as intellectually diminished.
“For that one day, it was my information alone,” says Sue, 55, a literature professor in Colorado who asked Considerable not to use her full name or specific location because she still has not disclosed her condition to most friends or at work.
“I wanted a day before everything changed, y’know?” Sue says. “I wanted to think about how I was going to tell people this.”
Many people with dementia wrestle with who to tell and when. The decision to reveal the diagnosis to a wider circle than close family and friends often comes some time—months, perhaps years—after memory and other cognitive problems become apparent.
That was the case with Mets star pitcher Tom Seaver, whose family announced on Thursday that he was recently diagnosed with dementia. But Seaver, a three-time Cy Young Award winner who led the then lovable-loser Mets to an improbable 1969 World Series championship, had been suffering from cognitive problems similar to dementia for many years, due to the effects of Lyme disease.
Similarly when former Supreme Court Justice Sandra Day O’Connor announced last fall that she was resigning from public life due to dementia, she disclosed that she had been diagnosed with the disease “some time ago.” Only when she felt unable to continue her current work—leading an initiative to teach civics to middle and high school students—did she decide to tell the world about her condition.
It was not the first time O’Connor had wrestled with the timing of a public disclosure about a dementia diagnosis. Her late husband’s struggle with the disease was part of her decision to step down from the bench in 2005, something she discussed publicly at the time.
Two years later, she was again forthcoming about the impact of dementia when revealed that her husband had become involved in a relationship with another woman at his care facility—and that the former Justice approved of the romance. After 55 years of marriage, she was happy he was content within his disease.
A public service
“When people like Sandra Day O’Connor make disclosures like this, they’re doing it to make a statement,’’ says Kevin Jameson, president of the Dementia Society of America. “Because they hope by doing so it can help other people.’’
“It’s a real public service,’’ he says.
Of course, Seaver and Justice O’Connor are by no means the only high-profile people to announce a dementia diagnosis. CNN founder Ted Turner and country singer Glen Campbell also disclosed their brain diseases, hoping to improve the public’s awareness.
But what if you’re not a celebrity or a national figure? Everyday people still fear—and suffer from —ignorance and prejudice that makes talking about their conditions difficult.
“The process of disclosure can depend on what age [you are] and how obvious it is,” says Jameson. “Dementia can impair your ability to communicate, ambulate, your behaviors. It becomes harder and harder to hide it.”
But, he says, “We understand it’s a deeply personal decision.”
Lifting the burden from yourself
Disclosure takes on many forms in many spheres. Telling immediate family is often the first, easiest and most necessary step, says Carol Howell, author of a book, blog and podcast all titled Let’s Talk Dementia.
Howell says close relatives usually already know something is wrong. They will be the most sympathetic and protective, and frequently become caretakers and advocates for the ailing person.
“Disclosing the diagnosis lifts the burden from one’s own shoulders and enables a person to see how supportive their loved ones and caring friends and co-workers can be,” says Joan Wright, a certified dementia practitioner based in Norwell, Mass.
People with dementia carry both fear of isolation and the possible fulfillment of that fear if they don’t let anyone to help. Says Wright, “Knowing that one is not alone in this uncertain and often frightening journey is a major reward of revealing the diagnosis.”
Letting certain strangers know in public situations can also be vital, Jameson says. His organization recommends people with dementia or their caregivers carry “Aware Share” cards that state who has the dementia and what kinds of symptoms might arise. They can be shown to waiters, bus drivers, cashiers, emergency personnel and others to explain the situation in a low-key manner.
The right people stay
Still, people with dementia and their relatives can be cautious and fearful of backlash.
“By and large in the general population, people are going to be very accepting of you,” says Howell. “In our world, the diagnosis of Alzheimer’s-type dementia specifically is so prevalent, it’s not like [it’s] a rare disease.”
But that acceptance and understanding are by no means universal. “There are people who look on dementia as something that’s your fault, that you brought this on, that you’re a bad person,” says Howell, whose mother died in 2015 after a nine-year battle with Alzheimer’s.
That ignorance is one reason Tracey Shorthouse, a 48-year-old from southeastern England who was diagnosed with Alzheimer’s in 2015, has been so vocal by writing and speaking about her conditions.
“Every negative view I hear just makes me want to fight more and speak out more,” Shorthouse writes via Facebook Messenger, which she uses because her speech can sometimes slur.
“I lost some friends in the beginning, but the right friends stayed and are very supportive,” she writes.
Dementia patients in their 40s and 50s face a different burden than people like Seaver, who is 74, O’Connor, 88, or Turner, 79, says Jennifer Howard, executive director of the Michigan-Great Lakes region of the Alzheimer’s Association.
The personal fears of social stigma and condescending, demeaning treatment persist, but on top of that is the concern that their careers could be jeopardized.
“They’re still employed, they may still have children in the house, they’re in their prime years of working life,” Howard said. “I’ve known family members who lost their jobs and then later they find out they had this dementia diagnosis and that explains why they were having trouble doing their work.”
Be prepared for various reactions
Teepa Snow, an occupational therapist and dementia expert based in Chapel Hill, N.C., says she suggests to her patients that they tell friends in a familiar, comfortable place and start out by “asking if they will do you a favor and just listen for a bit and not try to help, just listen.”
“Ask if they were aware you had been seeking some answers as to why you were experiencing some really noticeable changes in your ability to live life as you have in the past,” Snow says.
Then, she advises: “Share with them a few of the key symptoms you had noticed and what you have found out. Indicate that it does look like you are experiencing some brain changes that are consistent with some form of dementia.”
Then, she says, “Be prepared for various possible reactions.”
Sue, the literature professor, ending up telling her immediate family the day after she got the news. She asked her husband to tell certain friends and gave her children carte blanche to tell whomever they felt they needed to in order to create their own support systems.
“But I don’t want to stop teaching yet,” she says, “so I’m still in the closet at work. I can still do it and I don’t need anyone thinking I can’t.”
She adds, “I know I won’t get to teach as long as I thought I would, but I’ll be damned if anyone is going to stop me before I’m ready.”