Being Patient (December 3, 2018): For a Family With Near-Certainty of Early Alzheimer’s, the Search for a Cure Begins Within

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 that she’d been diagnosed with dementia, probably Alzheimer’s disease.

“As this condition has progressed, I am no longer able to participate in public life,” she wrote. “I want to be open about these changes, and while I am still able, share some personal thoughts.”

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

“There’s so much stigma,” Ms. Lynn said. “Caregivers feel so isolated and lonely. They were happy that she would bring light and public attention to this disease.”

Justice O’Connor had joined a growing but still tiny group: public figures who choose 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 former president wrote. “Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.”

Musician Glen Campbell and his family reached a similar decision in 2011, announcing his Alzheimer’s diagnosis, and several farewell concerts, in 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 with her early-onset Alzheimer’s disease, an uncommon variant.…

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