Dementia can be 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 social worker leading the session, could start the conversation.

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

“As This kind of condition has progressed, I am no longer able to participate in public life,” she wrote. “I want to be open about these adjustments, along with while I am still able, share some personal thoughts.”

This kind of meant something to Ms. Lynn’s participants in which the first woman to serve on the Supreme Court might acknowledge, at 88, in which she had the same relentless disease in which was claiming their husbands along with wives (along with in which killed Justice O’Connor’s husband, too, in 2009).

however researchers along with advocates argue in which Justice O’Connor’s forthright statement does serve a positive purpose.

Among her Penn patients, “a strong majority are hesitant to share the information with additional people,” Ms. Lynn said. They worry in which others will treat them with pity or condescension, in which their friends will drop away along with their social lives shrivel — all justifiable fears. People often do withdraw as their neighbors along with friends grow progressively more demented.

however patients also think, “If someone very well known can say she has This kind of, This kind of might be O.K. for me to say This kind of, too,” Ms. Lynn said.

Openness about dementia, instead of hiding This kind of, could lead to earlier diagnoses, said Shana Stites, a clinical psychologist along with researcher at the Penn Memory Center. She ticked off several ways in which can help.

“A diagnosis explains what’s happening, why you’re not remembering, why you’re behaving This kind of way,” Dr. Stites said. As dreaded as in which news may be, patients along with those around them sometimes feel relieved when their problems acquire a name along using a medical label.

Moreover, when people avoid knowing, “This kind of takes away the opportunity for the family to get prepared, for the person along with the family to educate themselves,” said Beth Kallmyer, vice president of care along with support at the Alzheimer’s Association.

Dementia care can be a long haul. Understanding the disease along with its prognosis allows time to assemble a health care team, to mobilize family, to seek legal along with financial advice.

along with then for those patients along with their families, disclosing This kind of to others can prove difficult, Dr. Stites said: “This kind of comes using a sense of vulnerability. This kind of takes courage.”

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

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

This kind of took several years to get a diagnosis: first mild cognitive impairment, then early-onset Alzheimer’s disease.

Dr. Draine, currently 55, was still teaching. “I wanted to be able to leave when I decided This kind of was time, not when someone else thought This kind of was time,” he said.

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

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

“I got actually positive responses,” Dr. Draine recalled. “People acknowledged what I was doing along with expressed respect along with empathy.”