”People with dementia live behind a curtain — they don’t get an audience. But if you genuinely engage with them in their world instead of trying to drag them back into yours, you can learn much from them about what really matters in life and that’s a gift.” — Joe Wallace
Joe Wallace is intimately familiar with the ravages of dementia, watching as it progressed in his grandparents. The Concord-based photographer, however, was always careful to separate the loved one from the disease.
“I loved my grandparents very much,” Wallace told reporter Joann Mackenzie. “They were 100% alive, vital caring people. Visiting my grandmother BeBe as she aged, in the nursing home environment, I thought, ‘Can’t we — and by “we” I mean Americans — do something better than this?’”
The narrative arc of Alzheimer’s is one of tragedy. With no cure at present, most of the story centers on the disease’s final, lonely stages. But that focus on the future too often robs those suffering from the disease of their present. These are people with a disease. They are not the disease itself.
“Anyone who has that many miles on their odometer is going to know more,” Wallace said of the inherent value of nurturing relationships with those who have lived long lives and then develop Alzheimer’s. “To engage with that person is to learn and experience incredible moments of connection, insight and wisdom.”
Wallace is doing his part to drive home that distinction with his photo exhibit “The Day After Yesterday: Portraits of Dementia,” now on display at SeniorCare in Gloucester’s Blackburn Park.
The exhibit features portraits of 28 people living with the disease. They are from all across America and a wide range of backgrounds, from model and pianist Phyllis Newell Kirkpatrick of Queens, New York, to Bama Bradley of Springfield, Missouri, who was diagnosed with early-onset Alzheimer’s at 27.
Wallace couples new photos with old, and gives each subject a chance to speak. What emerges is a portrait of a living, breathing person.
Kirkpatrick shares the story of meeting her husband: “We met under a table cloth at a party. He was not my date. He saw me crawl under there and a few minutes later he joined me. And that’s how it all started!”
Then there’s Gloucester’s Phil Parisi, a Fiesta Greasy Pole winner who managed Charlie’s Restaurant near Good Harbor Beach for so long that customers assumed he was Charlie.
Real people, with real stories.
Wallace is doing important work to erase the stigma associated with the disease. More than 6 million Americans are living with Alzheimer’s; that number is expected to jump to 15 million by 2050, according to the Alzheimer’s Association.
For years, those with the disease were referred to as senile, or called imbeciles, and made the butt of jokes. Or worse, they were seen as broken, best kept in the shadows, out of sight of “regular” society.
While there has been some progress on this front, the terms “Alzheimer’s” and “dementia” are still so strong that they threaten to overwhelm our perception of those suffering with the disease. We often — and rightly — call those battling cancer “courageous.” Those fighting against cognitive decline are no less brave.
And the stigma has a real effect. It makes those suffering from memory loss less likely to seek treatment, especially in the early stages of the disease. It can make it a taboo topic of discussion among family and friends at the very time a support system is needed most. And, as the Alzheimer’s Association notes, the general lack of understanding of the disease among the public means the government funds Alzheimer’s research at lower rates than other maladies, even when the cost of caring for Alzheimer’s disease is significantly higher.
There is some promise of a cure, with two new drugs making headlines in 2021. But those treatments, while promising, would at best slow the progress of the disease.
In the meantime, there are millions of Americans with stories like Phyllis Newell Kirkpatrick, Phil Parisi and Bama Bradley who deserve to be seen and heard.
To view Wallace’s exhibit, visit https://portraitsofdementia.photofolio.com/PORTRAITS.