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The wives who arrived at the Penn Memory Center in Philadelphia on Wednesday afternoon for the caregiver class had something in mind before Alison Lynn, the social worker who led the session, could begin the conversation.
A few days ago, Sandra Day O'Connor, a retired Supreme Court justice, published a letter in which she announced that she was suffering from dementia, probably Alzheimer's disease.
"As this condition progressed, I am no longer able to participate in public life," she wrote. "I want to be open about these changes and, even if I can still share some personal thoughts."
For Ms. Lynn's participants, this meant that the first woman to sit on the Supreme Court would recognize, at the age of 88, that she was suffering from the same implacable disease that had caused their husbands and their wives (and who also killed the husband of Judge O & # 39; Connor, in 2009).
"There is so much stigma," Lynn said. "Caregivers feel so isolated and alone. They were happy that she brings light and draws public attention to this disease. "
Justice O'Connor joined a growing but still small group of public figures who choose to share a diagnosis of dementia.
The breakthrough took place in 1994, when Ronald and Nancy Reagan published a handwritten letter revealing his Alzheimer's disease.
"By opening our hearts, we hope this could promote greater awareness of this condition," wrote the former president. "It may encourage a better understanding of the individuals and families who are affected by it."
Musician Glen Campbell and his family came to a similar decision in 2011 announcing the diagnosis of his Alzheimer's disease and several farewell concerts in a magazine interview. The concerts have become a 15-month tour and an intimate and flawless documentary.
Pat Summitt, who coached the women's basketball championship teams at the University of Tennessee, went public in 2012 with its Alzheimer's disease at an early stage, an unusual variant.
The family of actor Gene Wilder waited until his death in 2016, explaining that she feared her children would be bothered by Willy Wonka, a sick man.
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One can question what such actions really do for people with dementia and those who care for them.
It is hardly an obscure condition. About 5.7 million Americans have Alzheimer's disease, according to the Alzheimer's Association. This represents only 60 to 80% of people with dementia, which takes many forms.
Although dementia rseems to be in decline, perhaps because of rising education levels and better treatment for conditions such as hypertension, which seem to help prevent dementia. But the number of affected Americans will continue to grow with the growth and aging of the population.
Alzheimer's has already become the fifth leading cause of death in people aged 65 and over – and the only one for which drugs can not yet offer prevention or treatment.
One promising drug after the other has been shown to be ineffective in clinical trials. How can "awareness" make a difference?
However, researchers and human rights advocates argue that Justice O'Connor's candid statement has a positive purpose.
Among his Penn patients, "a strong majority is reluctant to share this information with other people," Ms. Lynn said. They fear that others will treat them with pity or condescension, that their friends will move away and that their social lives will be shriveled – so many legitimate fears. People often withdraw when their neighbors and friends become more and more insane.
But patients also think, "If a very well-known person can say that she has it, it could be O.K. for me to say that too," Lynn said.
Shana Stites, a clinical psychologist and researcher at the Penn Memory Center, said that frankness about dementia, instead of hiding it, could lead to earlier diagnoses. She ticked off several ways that can help.
"A diagnosis explains what's going on, why you do not remember it, why you behave this way," said Dr. Stites. As dreaded as this news may be, patients and their entourage sometimes feel relieved when their problems acquire a name and a medical label.
In addition, when people avoid knowing, it "prevents the family from getting ready, the person and the family to get educated," said Beth Kallmyer, vice president of care and support at the Alzheimer's Association.
The treatment of dementia is a long journey. Understanding the disease and its prognosis allows time to build a health care team, mobilize the family, seek legal and financial advice.
Early diagnosis can also be beneficial for research, which is increasingly targeting people in the early stages of the disease. This requires diagnosed participants willing to enroll in clinical trials.
Finally, "the public figures that manifest themselves do a lot to normalize the situation," said Dr. Stites. "Yes, it happens. That's the reality. "
Do not praise this reality. It is true that people can have several years after diagnosis to enjoy their lives, remain productive and engaged before the symptoms worsen.
But dementia is a terminal illness, a disease whose burden can overwhelm caregivers. It deprives patients of their identity as few other diseases do, sometimes resulting in loved ones crying as long as they are still alive.
That should not be a source of shame, a whispered disease, like cancer 60 years ago or AIDS 30 years ago.
Yet even many doctors avoid the diseaseMs. Kallmyer pointed out. In a 2015 Medicare data analysis commissioned by the Alzheimer's Association, doctors have diagnosed the condition in less than half of patients with Alzheimer's disease or their caregivers.
And then for these patients and their families, disclosing it to others can be difficultDr. Stites said, "It creates a sense of vulnerability. It takes courage. "
Jeffrey Draine and his wife Debora Dunbar showed courage in 2016.
Dr. Draine, a professor of social work at Temple University, had behaved in a bewildering way: she left the front door open, neglecting bills and driving with uncertainty.
It took several years to obtain a diagnosis: first, a mild cognitive disorder, then Alzheimer's disease at an early stage.
Dr. Draine, 55, was still teaching. "I wanted to be able to leave when I decided it was the moment, not when someone else thought it was the moment," he said. declared.
He was seeking housing under the Americans with Disabilities Act; the university provided him with an assistant to help him stay organized.
Then, because "I wanted to be the one who announced this announcement," he confronted his colleagues at a meeting of teachers and explained his illness.
"I've had some very positive answers," Dr. Draine recalled. "People recognized what I was doing and expressed respect and empathy."
He continued to teach until May, when he retired as a disabled person. Neither he nor Mrs. Dunbar, a nurse practitioner aged 56, regret their disclosure – to their children, colleagues and friends, to a Philadelphia Inquirer reporter (where, coincidentally, retired sports columnist Bill Lyon also wrote about his diagnosis of Alzheimer's).
"It has been good for us as a family," said Dunbar. "It has allowed us to feel surrounded by a community that understands."
The researchers, including Dr. Stites, have explored the stigmas of dementia in the hope of identifying contributing factors and changing the way the public views the disease.
In the meantime, speaking frankly about the foolishness of famous people or not around us can make what is supposedly inexpressible a more everyday event. Because it is one.
"The benefits, what it brings to other people with the disease, the example it gives to the general public – it's crucial," said Dr. Stites.
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