Last February, actor, comedian, and Alzheimer’s activist, Seth Rogen, testified before Congress, daring the world to pay attention to this incurable disease:
“Americans whisper the word Alzheimer’s because their government whispers the word Alzheimer’s. And although a whisper is better than the silence that the Alzheimer’s community has been facing for decades, it’s still not enough,” Rogen said. “It needs to be yelled and screamed to the point that it finally gets the attention and the funding that it deserves and needs.”
Well it did. Just not in the way people expected.
In January, Michael Ellenbogen, diagnosed eight years ago with younger-onset Alzheimer’s disease, made an impassioned plea for increasing federal Alzheimer’s support in a letter read by a staffer to the Advisory Council on Alzheimer’s Research, Care and Services in the District of Columbia:
“What do we need to do to get the attention of people like you? Will it take someone like me to have some sort of shootout like Columbine before someone will take notice? I would not do that but I am trying to get your attention, and I am failing and dying at the same time,” Ellenbogen said.
His words got people’s attention all right, but then he was virtually exiled and declared a security threat by a governmental agency. His message divided a community. Caregivers and people living with dementia understood his intent, while others thought he crossed a line with his mass-shooting reference.
Years ago, while caring for my father who had Alzheimer’s, I served as a national spokeswoman for family and professional caregivers for people with dementia. At that time, I couldn’t even count on one hand who was willing to speak publicly.
So great was the stigma around dementia and Alzheimer’s that people feared any association would cast a shadow on their families. Remember cancer during the 60s and early 70s? Or HIV a decade later? While presenting at conferences, I recall only one person with Alzheimer’s who spoke publicly, and he was a Ph.D. sociologist.
Today, as more people are speaking openly about Alzheimer’s, this divisive incident reminds us to be aware that people living with diseases that impair cognition do have diminished judgment.
The question then becomes, where do we draw the line? Is Ellenbogen a security threat or a man with dementia who knows his life with Alzheimer’s is limited and feels the need for urgent action?
More importantly, how do we reduce the stigma if organizations dedicated to raising awareness and advocating for the cause turn a deaf ear to one voice with dementia? Is it fair to listen to some and not others? What if we listened with compassion and asked questions to clarify potential misunderstandings? After all, each person’s experience is unique and offers insights we would otherwise not have.
Voice With Dementia: Robert Bowles Jr. Robert Bowles Jr., a Georgia-based pharmacist for 42 years, was a caregiver for his late parents while his father lived with vascular dementia and his mother with Alzheimer’s. Today, at age 67, he’s retired following a diagnosis three years ago of mild cognitive impairment, or MCI, with underlying symptoms of Lewy body dementia. An oft-misdiagnosed disease, Lewy body dementia was once described by a representative of the Lewy Body Dementia Association as walking like Parkinson’s and talking like Alzheimer’s.
During a recent call, Bowles Jr., emphasized the vast difference between being his parents’ care partner versus living with the disease. “You have to live with the disease to really understand the dynamics of dementia.”
Despite symptoms including hallucinations, he forges ahead. During his time as a pharmacist, he discovered that engaging in his patients’ health care helped improve their outcomes. He’s taking the same approach with dementia, serving as a Dementia Mentor who participates in online webinars and virtual memory cafes designed to support those touched by the disease. Focused on impacting one person at a time, he adds, “I’m thankful that people are stepping to the plate and saying, ‘Let me tell you what it’s like to live with dementia.'”
In his friendly Southern accent, he adds, “I’m just a pea in the ocean — a small element in a world of dementia.” Still, all those elements — all the individual voices of people living with the disease — can add up to a big result, he says:
“We need to keep pushing to raise awareness. Think of it, why does someone not visit a person with dementia? They’re afraid. They don’t know how to react or how to interact. If we reduce the stigma, we’ll see the culture change and the lives of care partners and persons with dementia will be better.”
Voice With Dementia: Mary Howard Read Four years ago, at age 51, Read, a licensed practical nurse, remembers the humiliation of being laughed at and called stupid by her supervisor for being forgetful and needing repeated instructions. Feeling something wasn’t right she went for tests and learned she had MCI. Something about her symptoms seemed greater than MCI, and her doctor ordered follow-up tests including a PET scan and an MRI, which showed younger-onset Alzheimer’s.
When asked how her relationships changed following diagnosis, she says, “I lost a lot of friends. They stopped calling and talking with me.”
A New York native who lives in Pennsylvania, Mary now realizes she started forgetting in her 40s. In piecing together her medical history, she also discovered dementia runs in her family: Her father had symptoms, as did her aunts and grandmother.
One of the biggest struggles she faces today is trying to maintain her identity without being defined by the disease. “When I’m volunteering for the Alzheimer’s Association and setting up a table at an event, I won’t admit I have dementia to the other exhibitors, otherwise, they’ll think I need to be watched,” she says. “When I admit I have Alzheimer’s to the people visiting my table, they’re often surprised someone with Alzheimer’s can still function.”
To continue raising awareness, Mary serves as an Alzheimer’s Ambassador to Rep. Joe Pitts of Pennsylvania. She has campaigned on Capitol Hill with the Alzheimer’s Association for greater funding for research and support services, and was recently nominated to the association’s Early-Stage Advisory Group. “I spend more time away from home today than when I was working full time,” she says.
We Must Listen
We have come too far to stop listening now.
We must realize that in order to become better policy makers, health care providers and more importantly, caregivers, we must continue listening.
These are just a few voices with dementia. If we listen to those who are willing to speak, we’ll improve our understanding while helping to reduce the stigma. We need to remember that one’s judgment filter is not as fine due to brain cells being destroyed by Alzheimer’s disease. Just as a comedian-actor-activist invites us to yell and scream to get the attention Alzheimer’s funding needs and deserves, so too must we listen with compassion and understanding to people with dementia.
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Voices With Dementia: When Do We Stop Listening? originally appeared on usnews.com
