Shaping a better understanding of dementia
PUBLIC FIGURES SHARING NEWS OF THEIR DIAGNOSIS ARE HELPING TO SPREAD AWARENESS OF THE HITHERTO WHISPERED-ABOUT CONDITION
The spouses arriving for the afternoon caregivers’ class at the Penn Memory Centre 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.
It meant something to 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 O’Connor’s husband, too, in 2009).
“There’s so much stigma,” Lynn said. “Caregivers feel so isolated and lonely. They were happy that she would bring light and public attention to this disease.”
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 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 an interview.
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 that they feared children might be disturbed by an ailing Willy Wonka.
‘Openness for early diagnosis’
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 per cent of people with dementia, which takes multiple forms.
In the United States, Alzheimer’s has become the fifth leading cause of death for those aged 65 and older — and 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?
But researchers and advocates argue that O’Connor’s forthrightness does serve a positive purpose.
Openness about dementia, instead of hiding it, could lead to earlier diagnoses, said Shana Stites, clinical psychologist and researcher at the Penn Memory Centre.
“A diagnosis explains what’s happening, why you’re not remembering, why you’re behaving this way,” Stites said. As dreaded as that news may be, patients and those around them sometimes feel relieved when their problems acquire a name and a medical label.
Moreover, when people avoid knowing, “it takes away the opportunity for the family to get prepared, for the person and the family to educate themselves,” said Beth Kallmyer, vice president of care and support at the Alzheimer’s Association.
Dementia care is long haul. Understanding the disease and its prognosis allows time to assemble a health care team, to mobilise family, to seek legal and financial advice.
Early diagnosis can benefit research, too, which increasingly focuses on people in the beginning stages of the disease. That requires participants willing to enrol in clinical trials. “Public figures who come forward do a lot to normalise the condition,” Stites said.
“Yes, this happens. It’s reality.”
Let’s not prettify that reality. True, people may have several years after diagnosis in which to enjoy their lives, to be productive and engaged, before it intensifies.
But dementia is a terminal disease, one whose burdens can overwhelm family caregivers. It robs patients of their identities in a way few other illnesses do, sometimes causing loved ones to mourn them while they’re still living.
Better public awareness
Yet, even many physicians evade the disease, Kallmyer said. In a 2015 analysis of Medicare data, doctors delivered a diagnosis of the condition to less than half of Alzheimer’s patients or their caregivers.
Jeffrey Draine a professor of social work at Temple University, had developed puzzling behaviour — leaving the front door ajar, neglecting the bills, driving erratically. It took several years to get a diagnosis: first mild cognitive impairment, then early onset Alzheimer’s disease.
Draine, now 55, said: “I wanted to be able to leave (teaching) when I decided it was time, not when someone else thought it was time,” he said. Then, because “I wanted to be the one who made the announcement,” he explained his illness to colleagues at a faculty meeting. “I got really positive responses,” Draine recalled. “People expressed respect and empathy.”
The professor continued teaching until May this year, when he retired on disability.
I got really positive responses (on revealing his Alzheimer’s diagnosis to colleagues). People expressed respect and empathy.” Jeffrey Draine | Retired professor