Performer Breaks Silence About Diagnosis
By John Colapinto, AARP
Tony Bennett has been battling Alzheimer’s disease since 2016. He kept up his legendary performances until last March, when the coronavirus put live shows on hold.
Bennett has so far been spared the disorientation that can prompt patients to wander from home, as well as the episodes of terror, rage or depression that can accompany Alzheimer’s frightening detachment from reality; and, indeed, he might never develop these symptoms. But there was little doubt that the disease had progressed. Even his increasingly rare moments of clarity and awareness reveal the depths of his debility.
Although he can still recognize family members, he is not always sure where he is or what is happening around him.
It is not easy for any family to break the silence around a loved one’s diagnosis with Alzheimer’s disease. Like cancer and mental illness, Alzheimer’s carries a stigma, since people feel a special terror of an incurable disease that ruthlessly detaches its sufferers from the places, events and people that anchored them in life. Many treat it as an immediate death sentence and retreat from the world, encouraged to do so by family members who fear the disease and its unpredictable, and sometimes socially embarrassing, course.
Researchers have recently raised alarms about the ill effects of such stigmatization. Gill Livingston, M.D., a University College London psychiatrist specializing in dementias, said that the silence around Alzheimer’s only causes misconceptions and stereotypes to accrue around the disease, creating a vicious cycle that leads to further stigmatization and fear.
“Panicking and hiding away is really unhelpful,” she said. “What we want is for people to be as open as they can, open within themselves and within their families, so that they can be supported in the things they can’t do, and be helped to live a relatively full life. Support makes a great deal of difference.”
Yet a recent push to raise awareness of Alzheimer’s disease may have backfired, since people tend to hear only the frightening message that the illness is incurable and progressive. People need to understand that sufferers who receive loving support and timely medical attention can maintain a good quality of life for years.
staying silent about Alzheimer’s will soon be as impossible for society as it has now become for Tony Bennett’s family. And his story of Alzheimer’s is, like the rest of his long life, inspirational.
Studies have shown that a Mediterranean diet — high in olive oil, fresh fruits and vegetables, legumes and fish — is beneficial. Bennett adheres to the special diet. He also gets active exercise three days each week. He believes that strong blood flow slows the progression of neurodegenerative disease.
Gayatri Devi, M.D., a neurologist at Lenox Hill Hospital in Manhattan, diagnosed Tony in 2016. She has studied the disease for 25 years and is the author of the book The Spectrum of Hope, which describes Alzheimer’s disease as a “spectrum disorder,” one that varies greatly from person to person. Quality of life, progress of the disease and how long a sufferer lives depend first, Devi said, on what kind of brain they bring to the situation. “And Tony Bennett,” she told me, “brought an amazingly versatile brain.” He has some “cognitive issues, but multiple other areas of his brain are still resilient and functioning well,” she said. “He is doing so many things, at 94, that many people without dementia cannot do. He really is the symbol of hope for someone with a cognitive disorder.”
As well as taking the standard Alzheimer’s medications (cholinesterase inhibitors that regulate the concentration of the brain’s chemical messengers for normal memory function) and his regimen of diet and exercise, Devi said that Tony’s continued high functioning and well-being is attributable to his strong family support — and especially that of his prime caregiver, Susan.
“I’ve been humbled by the level of devotion,” Devi told me. “She also expects a lot from him. I think her background as a teacher helps, but she’s also very much in love with him. And he rises to her expectations.”
She cited moments when Tony, in her clinic’s waiting room, is recognized by a fan. “Susan will say, ‘Tony B! A fan of yours is saying hello!’ And he then turns to the person with his big blues, smiles his smile and says, ‘How are you?’ or ‘Thank you!’ The charisma and magnetism get turned on.” Such moments of connection and awareness are beneficial, Devi said, because they stimulate the brain.
One thing that did not change was Tony’s love of music and singing. Music’s peculiar power to reach even severely afflicted dementia patients, stirring memories and reestablishing connections to those around them, is well documented but not well understood. The documentary Alive Inside (2014) shows nursing home patients with severe dementia aroused from immobility and silence when issued earbuds and iPods with the favorite music of their youth. One patient, a silent 94-year-old man, begins speaking volubly about his childhood and is able to recall his forgotten daughter after a session of listening to his beloved Cab Calloway. Neuroscientist and musician Daniel Levitin, author of the best sellers This Is Your Brain on Music and Successful Aging, points out that it is music’s primarily emotional appeal that enables it to tap memories not otherwise accessible to a mind impaired by Alzheimer’s disease. Even severely affected patients are often able to recall the lyrics and melodies to songs they loved in adolescence, a time of high emotionality and self-discovery when the developing brain “tags” memories as particularly salient and important. This would go far to explain the astonishing fact that after his diagnosis with Alzheimer’s disease, Tony Bennett continued to tour extensively, singing his 90-minute set of sophisticated music with such panache, precision and professionalism that audiences and critics never suspected his condition.
Devi, his neurologist, strongly encouraged his family to keep Bennett singing and performing for as long as he could happily do so. “It kept him on his toes and also stimulated his brain in a significant way,” Devi told me. Both Susan and Danny said that backstage, Tony could seem utterly mystified about his whereabouts. But the moment he heard the announcer’s voice boom “Ladies and gentlemen — Tony Bennett!” he would transform himself into performance mode, stride out into the spotlight, smiling and acknowledging the audience’s applause. And start singing. Still, Susan spent every performance, post diagnosis, worried about him losing a lyric, panicking, growing confused onstage. “I was a nervous frigging wreck,” she said. “Yet he always delivered!”
He did it right up to his last public performance, on March 11, 2020, at the Count Basie Center for the Arts in Red Bank, New Jersey — after which the COVID-19 pandemic forced all musical acts off the road. Just how therapeutically beneficial performing had been for Bennett soon became obvious when his world shrank to the confines of his apartment.
“This has been a real blow from a cognitive perspective,” Devi told me. “His memory, prior to the pandemic, was so much better. And he’s not alone. So many of my patients are negatively affected by the isolation, the inability to do the things that matter to them. For someone like Tony Bennett, the big high he gets from performing was very important.”
Neuroscience cannot explain how a man whose speaking voice has become so hesitant — whose memory of events, people and places has largely vanished — can, at the sound of a musical cue, lift his voice in song with such beauty and expression, except to say that music and singing emerge, as Levitin has pointed out, from areas of the brain quite distinct from those associated with speech and language. The powerful feelings released by music can connect listeners to their deep emotional memories, even those inaccessible to the conscious mind.
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Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease. The scientific name for prion disease is transmissible spongiform encephalopathy.