Dementia Is Getting Some Very Public Faces

The spouses arriving for the Wednesday afternoon caregivers’ class at the Penn Memory Center in Philadelphia had something on their minds even before Alison Lynn, the caseworker leading the session, could start the conversation.

A few days before, retired Supreme Court Justice Sandra Day O’Connor had released a letter announcing that she’d been diagnosed with dementia, probably Alzheimer’s disease.

“As this condition has progressed, I'm not ready to participate publicly life,” she wrote.

“I want to be open about these changes, and while I'm still able, share some personal thoughts.”

It meant something to Ms. Lynn’s participants that the primary woman to serve on the Supreme Court would acknowledge, at 88, that she had an equivalent a relentless disease that was claiming their husbands and wives (and that killed Justice O’Connor’s husband, too, in 2009).

“There’s such a lot stigma,” Ms. Lynn said. “Caregivers feel so isolated and lonely.

They we're happy that she would bring light and public attention to the present disease.”

Justice O’Connor had joined a growing but still tiny group: public figures who prefer to share a dementia diagnosis.

The breakthrough came in 1994 when Ronald and Nancy Reagan released a handwritten letter disclosing his Alzheimer’s disease.

“In opening our hearts, we hope this might promote greater awareness of this condition,” the previous president wrote. “Perhaps it'll encourage a clearer understanding of the individuals and families who are suffering from it.”

Musician Glen Campbell and his family reached an identical decision in 2011, announcing his Alzheimer’s diagnosis, and a number of other farewell concerts, during a magazine interview.

The concerts became a 15-month tour and an intimate, unflinching documentary.

Pat Summitt, who coached championship women’s basketball teams at the University of Tennessee went public in 2012 together with her early-onset Alzheimer’s disease, an uncommon variant.

Actor Gene Wilder’s family waited until his death in 2016, explaining that they feared children could be disturbed by an ailing Willy Wonka.

One might question what such actions actually accomplish for the people dealing with dementia and people who shoulder their care.

It’s hardly an obscure condition. About 5.7 million Americans have Alzheimer’s disease, the Alzheimer’s Association estimates.

That represents just 60 to 80 percent of individuals with dementia, which takes multiple forms.

Though dementia rate seems to be declining, possibly due to rising education levels and better treatment for conditions like hypertension, both of which seem to assist prevent dementia.

But the number of USA citizens affected will still grow because the population grows and ages.

Already, Alzheimer’s has become the fifth leading explanation for death for those aged 65 and older — and therefore the just one that medicine can’t yet offer prevention or treatment.

One promising drug after another has proved ineffective in clinical trials.

How can “raising awareness” make any difference? But researchers and advocates argue that Justice O’Connor’s forthright statement does serve a positive purpose.

Among her Penn patients, “a strong majority are hesitant to share the knowledge with people,” Ms. Lynn said.

They worry that others will treat them pityingly or condescension, that their friends will slip and their social lives shrivel — all justifiable fears. People often do withdraw as their neighbors and friends grow progressively more demented.

But patients also think, “If someone all right knew can say she has this, it'd be O.K. on behalf of me to mention it, too,” Ms. Lynn said.

Openness about dementia, rather than hiding it, could lead to earlier diagnoses, said Shana Stites, a psychotherapist, and researcher at the Penn Memory Center.

She ticked off several ways in which can help.

“A the diagnosis explains what’s happening, why you’re not remembering, why you’re behaving this manner,” Dr. Stites said.

As dreaded as that news could also be, patients and people around them sometimes feel relieved when their problems acquire a reputation and a medical label.

Moreover, when people avoid knowing, “it takes away the chance for the family to urge prepared, for the person and therefore the family to teach themselves,” said Beth Kallmyer, vice chairman of care and support at the Alzheimer’s Association.

Dementia care may be the end of the day. Understanding the disease and its prognosis allows time to assemble a health care team, to mobilize family, to hunt legal and financial advice.

Early diagnosis can benefit research, too, which increasingly focuses on people within the beginning stages of the disease.

That requires diagnosed participants willing to enroll in clinical trials.

Finally, “public figures who come to the fore do tons to normalize the condition,” Dr. Stites said. “Yes, this happens. It’s a reality.”

Let’s not prettify that reality. True, people may have several years after diagnosis during which to enjoy their lives, to stay productive and engaged, before symptoms intensify.

But dementia may be a terminal disease, one whose burdens can overwhelm the family caregivers. It robs patients of their identities during a way few other illnesses do, sometimes causing loved ones to mourn them while they’re still living.

That shouldn’t make it a source of shame, a whispered-about disease, as cancer was 60 years ago or AIDS was 30 years ago.

Yet even many physicians evade the disease, Ms. Kallmyer acknowledged.

In a 2015 analysis of Medicare data, commissioned by the Alzheimer’s Association, doctors delivered a diagnosis of the condition to fewer than half Alzheimer’s patients or their caregivers.

And then for those patients and their families, disclosing it to others can prove difficult, Dr. Stites said: “It comes with a way of vulnerability. It takes courage.”

Jeffrey Draine and his wife Debora Dunbar mustered their courage in 2016.

Dr. Draine, a professor of welfare work at Temple University, had developed puzzling behavior — leaving the front entrance to their house ajar, neglecting the bills, driving uncertainty.

It took several years to urge a diagnosis: first mild cognitive impairment, then early-onset Alzheimer’s disease.

Dr. Draine, now 55, was still teaching. “I wanted to be ready to leave once I decided it had been time, not when somebody else thought it had been time,” he said.

He sought accommodation under the Americans with Disabilities Act; the university provided an assistant to assist him to stay organized.

Then, because “I wanted to be the one who made the announcement,” he faced his colleagues at a school meeting and explained his illness.

“I got really positive responses,” Dr. Draine recalled.

“People acknowledged what I used to be doing and expressed respect and empathy.”

He continued teaching until May when he retired on disability.

Neither he nor Ms. Dunbar, 56, a nurse-practitioner, regrets their disclosure — to their children, to colleagues and friends, to a reporter for the Philadelphia Inquirer (where, coincidentally, retired sports columnist Bill Lyon also has been writing about his Alzheimer’s diagnosis).