More people with Alzheimer’s and other brain diseases are forming organizations on their own terms to increase understanding of their conditions.
They have responded by forming self-support organizations aimed at diverting attention from the late stages of dementia. Many people use a motto for their desire to be involved: “Nothing about us, without us.” Their goal is to help health care professionals, policy makers and family members better understand the complexities and limitations of living well with dementia, as well as the possibilities. Another priority for them is to remove the widespread stigma surrounding the brain disorder that encompasses a wide variety of diseases, including Alzheimer’s.
“There is life after a dementia diagnosis. That’s what many people don’t understand,” says Brian LeBlanc of Clearwater, Fla. He was diagnosed with early-stage Alzheimer’s in 2014 and has been a lawyer since. “I’m not sitting in my house withering away.”
The 61-year-old former public relations and marketing executive began speaking on behalf of the Alzheimer’s Association a year after his diagnosis. He also writes a blog. He helped found the National Council of Dementia Minds.
That organization grew from a presentation to long-term care providers by eight people with dementia in 2019. Now it has members in 13 states, between the ages of 46 to 85 years. All have been diagnosed with dementia – some less than a year ago and others 11 years earlier. They provide training and educational series on how dementia affects hearing, smell, and taste. They describe how therapy dogs equipped with routines, automated bill payments, electronic notepads and GPS trackers help them function more independently.
During these sessions, which have reached more than 4,000 people in four countries, they also open up about losing jobs and friends and the worst things people can say to them.
Among them: “You don’t feel like you have dementia.”
“I forget things too.”
“Go live your life.”
Bonnie Erickson, 61, remembered hearing those last four words at her doctor’s office that she had white matter disease and vascular dementia. She did not receive any informative prescription or other follow-up instructions. He searched the Internet for answers, unsure what to do with that advice.
“I was terrified of what I found,” says Ms. Erickson, a former program analyst at the Department of Homeland Security who lives in Billings, Mont. Since then, she has joined Dementia Alliance International, whose governing body also includes people with dementia, and is the chairman of the National Council of Dementia Minds.
“My personal goal is to improve the diagnosis process, from, ‘Go get your affairs in order,’ to, ‘Here are some resources that can help you understand your diagnosis and live well,'” she says.
Stigma often prevents people from seeking a diagnosis. That’s a mistake, says Mark Roberts, 69, who was diagnosed with vascular dementia.
A skilled trader in Elwell, Mich., who loved trout fishing and gardening, Mr. Roberts became uncharacteristically agitated and frustrated at work and home shortly after turning 60. He attacked his wife, Brenda Roberts, who endured his growing anger until late 2013, when she threatened to take a gun and “put it over” because he couldn’t put up a door.
“I thought he had just become an angry man,” says Brenda, who had worked with adults over the age of 40, but never suspected he had dementia. He’s with his daughter She went to live and insisted that she see a neuropsychologist.
After initial counseling sessions, Mr. Roberts saw a geriatric psychiatrist, who diagnosed him with vascular dementia at age 62. As part of the National Council of Dementia Minds, he often gives presentations with Brenda, explaining his behavior from receiving the diagnosis and saving his marriage. Brenda Roberts is the Executive Director, facilitating training and presentations.
Advocates often describe how they rearranged their lives after losing their jobs.
Arnold Beresh, a 68-year-old podiatrist, had been practicing for 35 years when he started having problems multitasking and finding his way home. He compensated for some time, bringing people to meetings to take notes for him. A 2015 visit to an expert confirmed his worst fear: early-onset frontotemporal dementia.
“You’re done,” he remembers telling the doctor. “It was like crashing into a wall. I went from working 60 hours a week to zero.”
he and his wife, Michelle Beresh, moved from Newport News, VA to West Bloomfield, Michigan, to be closer to family. To help fill the void left by losing his practice, he works with the Michigan Dementia Coalition and the National Council of Dementia Minds. He meets with small groups of people and answers questions about living with dementia. “It helps keep some of my world straight, and it gives me a sense of purpose,” he says.
Acceptance and adjustment are key, says Theresa Montgomery, 65, of Duluth, Ga. She was 58 when she received her little one’s diagnosis of Alzheimer’s. She thought she might die within five years.
She says she had a choice—mop or get busy—and chose the latter, serving as a consultant and speaker for three dementia-related groups. Life expectancy varies for people with early dementia. A 2019 study showed a median survival time of 17 years after symptom onset and 10 years after diagnosis.
“I don’t want that, but I have to admit it,” says Ms. Montgomery. His short-term memory is declining and he is having trouble sleeping. “But I always have something on my plate,” she says. “You know that? I’ve got a purpose. You know that? I have a life. You know that? I can still do things.”
Some people associate dementia only with memory loss. Many advocates also describe other symptoms so that family members and health care professionals can be aware.
Steven Barbieri, 60, was hard of hearing. His wife, Tracy Barbieri, asked them to have their ears checked after their daughters did not attend school as requested. “She thought I had selective hearing,” he says.
His hearing was fine, so his doctor referred him to a neurologist, where he did several scans and tests, including a drawing of a clock. “Mine looked like a 6-year-old pulled it off,” says Mr. Barberi, who was 51 at the time. He received his dementia diagnosis and two days later retired from Wells Fargo, where he was the district manager in Modesto, Calif.
He learned that with dementia, his brain couldn’t process all the words he heard, so he could remember two out of four words in conversation. He describes that experience during presentations for the Alzheimer’s Association and the National Council of Dementia Minds.
Knowing the importance of exercise and diet, Mr. Barberi regularly hits the gym, takes 12 nutritional supplements, follows the Mediterranean diet and sleeps seven to eight hours a night. He and his wife decided to move to Idaho.
“I do things now,” he says. “I want to die with memories. Not dreams.”
Claire Ansberry at [email protected]