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).
“There’s so much stigma,” Ms. Lynn said. “Caregivers feel so isolated along with lonely. They were happy in which she might bring light along with public attention to This kind of disease.”
Justice O’Connor had joined a growing however still tiny group: public figures who choose to share a dementia diagnosis.
The breakthrough came in 1994, when Ronald along with Nancy Reagan released a handwritten letter disclosing his Alzheimer’s disease.
“In opening our hearts, we trust This kind of might promote greater awareness of This kind of condition,” the former president wrote. “Perhaps This kind of will encourage a clearer understanding of the individuals along with families who are affected by This kind of.”
Musician Glen Campbell along with his family reached a similar decision in 2011, announcing his Alzheimer’s diagnosis, along with several farewell concerts, in a magazine interview. The concerts became a 15-month tour along with 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.
Actor Gene Wilder’s family waited until his death in 2016, explaining in which they feared children might be disturbed by an ailing Willy Wonka.
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One might question what such actions actually accomplish for the people coping with dementia along with those who shoulder their care.
This kind of’s hardly an obscure condition. About 5.7 million Americans have Alzheimer’s disease, the Alzheimer’s Association estimates. in which represents just 60 to 80 percent of people with dementia, which takes multiple forms.
Though dementia rate seems to be declining, possibly because of rising education levels along with better treatment for conditions like hypertension, both of which seem to help prevent dementia. however the number of Americans affected will continue to grow as the population grows along with ages.
Already, Alzheimer’s has become the fifth leading cause of death for those aged 65 along with older — along with the only one for which 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?
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.
Early diagnosis can benefit research, too, which increasingly focuses on people from the beginning stages of disease. in which requires diagnosed participants willing to enroll in clinical trials.
Finally, “public figures who come forward do a lot to normalize the condition,” Dr. Stites said. “Yes, This kind of happens. This kind of’s reality.”
Let’s not prettify in which reality. True, people may have several years after diagnosis in which to enjoy their lives, to remain productive along with engaged, before symptoms intensify.
however dementia can be a terminal disease, one whose burdens can overwhelm family caregivers. This kind of robs patients of their identities in a way few additional illnesses do, sometimes causing loved ones to mourn them while they’re still living.
in which shouldn’t make This kind of 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 pointed out. In a 2015 analysis of Medicare data, commissioned by the Alzheimer’s Association, doctors delivered a diagnosis of the condition to fewer than half of Alzheimer’s patients or their caregivers.
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.”
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 along with friends, to a reporter for the Philadelphia Inquirer (where, coincidentally, retired sports columnist Bill Lyon also has been writing about his Alzheimer’s diagnosis).
“This kind of’s been beneficial to us as a family,” Ms. Dunbar added. “This kind of’s made us feel encircled by a community in which understands.”
Researchers, including Dr. Stites, have been exploring the stigma of dementia, hoping to identify contributing factors along with to change the way the public regards the disease.
from the meantime, having people around us, famous or not, talk frankly about dementia may render the supposedly unspeakable a more everyday occurrence. Because This kind of can be one.
“The benefits, what This kind of does for others living with the disease, the example This kind of sets for the general public — This kind of’s crucial,” Dr. Stites said.