Michigan-based group reframes dementia: There's life after diagnosis

• A group of people with dementia wants you to know they still have a lot of living to do and a lot to say
• A new report outlines changes — some specific, some vague — to help people with dementia live more fully
• The National Council of Dementia Minds offers support meetings for specific groups, including Black people with dementia, men with dementia and physicians

WHITE LAKE — Dr. Arnold Beresh wished he’d known it sooner: There’s a whole lot of living still to do after a diagnosis of dementia.

But sitting in a doctor’s consulting room on a warm August day in 2015, his wife, Michele, at his side, the foot and ankle surgeon had just been diagnosed with frontotemporal dementia, a rare dementia that often strikes people before they are 65.

He was advised to stop working. Immediately.

It’s like I was driving a car 95 miles an hour, and now suddenly, I’ve hit a wall,” he said.

“He was totally devastated,” said his wife, Michele Beresh, from their tidy living room in White Lake earlier this month.

These days Arnold Beresh is among those who speak for the National Council of Dementia Minds. The Alma-based group is trying to reframe dementia and its most common form, Alzheimer’s disease.

Their point: We’ll be around for a while. And we have a lot to give. 

In April, the Council produced a 38-page report, “Transforming Lives with Dementia,” that its members hope will dramatically improve lives for those with dementia and their loved ones.

Chief among the demands is this: People with dementia should lead the conversation around their care and support. 

‘What I have to say becomes suspect’ 

Too often, questions about a person with dementia are directed to the person’s loved ones or caregiver, rather than the person with dementia.

After a dementia diagnosis, it’s as though a person’s ability to communicate can no longer be trusted, said Dr. Sara Langer, a Minnesota neurologist and Michigan native who trained and lectured at the University of Michigan. 

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Langer was diagnosed with Lewy body dementia in 2018 as she approached her 60th birthday. She now serves alongside Beresh on the National Council of Dementia Minds’ panel of doctors, working to shift the health care conversation about dementia from “a death sentence” to one of  “hope and resilience.” 

“Once I am perceived as somehow having some cognitive difficulty, what I have to say becomes suspect,” she said.

In fact, some might consider it “radical” just that people with dementia produced the report and its 131 recommendations, said Brenda Roberts, executive director of the National Council.

“It's significant because people living with dementia are often excluded from the decision-making process,” she said.

The recommendations address social, emotional, medical, financial and legal hurdles to living well with dementia. Some are specific, such as establishing talking points for doctors and patients, but others are more vague, such as stressing the importance of finding joy after diagnosis.

The report is filled with pictures of people smiling as they bike, boat, ski, and travel. “Every photo in this report is a person living well with dementia (and) a care partner,” the report notes.

The recommendations include: 

• Develop informational resources “that emphasize the positive aspects of living well following a diagnosis, providing hope and inspiration for the journey ahead.”
• Create a guide for organizations to establish effective support groups.
• Establish peer support groups in which only individuals with dementia, not their caregivers, are part of the discussion
• Raise awareness and support in culturally specific ways, including reaching out to Black churches.
• Develop a conversation guide to help newly diagnosed people discuss their condition with employers, family members, friends, and children.
• Offer “coaches or guides” and peer support to families.
• Link people to insurance assistance and legal help.
• Encouraging people with dementia to be involved with genetic research studies. 
• Promote the concept of ASAP — Acceptance, Socialization, Attitude, and Purpose — in the early stages of diagnosis.

The report, funded by the Michigan Health Endowment Fund, drew from the experiences of 65 people broken into focus groups. They represented Black, Latino, LGBTQ+ communities, people with different types of dementia, and people living with early-onset dementia.  Participants ranged in age from 47 to 92. 

Not an old person’s disease

Much of the report and the group’s work focuses on reframing dementia as something other than “an old person’s disease,” said Beresh.

He did what so many others do when they hear words like “dementia.” He visualized end-stage dementia: frail, elderly people, confused wanderings and the loss of all that is familiar. 

Consider Bruce Willis, Beresh said.

When his family revealed last year that he, too, had been diagnosed with FTD, the image of TV and big screen celebrity shifted quickly (and sometimes incorrectly) from the guy known as a wise-cracking, 1980s detective and a foul-mouthed action movie hero to a frail man unable to speak.

The disease likely had been progressing for some time — a period that the public didn’t witness, Beresh said.

And sometimes those early stages creep in shockingly early.

While the most common form of dementia, Alzheimer’s disease, is more common after 65 years old, it also occurs in about 110 of every 100,000 adults between ages 30 and 64 years old, according to the Mayo Clinic. 

Nia Mostacero, 49, a retired US Air Force medic, beauty pageant competitor and mother — was 42 when she was diagnosed.

Nobody mentioned disability benefits or, even better, support so she could continue working at the time, said the Idaho woman, who had just retired from the Air Force at the time. Instead, she spent nearly two years in shock.

Now, she advocates for early detection in her roles representing both the Michigan-based National Council and the Alzheimer’s Association.

Seeing dementia as a disease of the aged shortchanges a society that instead could support younger people with dementia so they can continue working and contributing, she said.

“It has to start somewhere,” said Mostacero. “Every person with late-stage (dementia) had early stages of it, too.”

Abandoned

Among the intended audiences for the report are health care providers — both those who practice on the front lines and those who train future doctors, several members of the National Council told Bridge.

One of the most infuriating and demeaning feelings is that of being discarded by the medical community, Beresh said: “It’s almost like ‘Here’s your diagnosis, and I’ll see in six months.”

The report calls for a radical change in those moments of diagnosis — one often uttered by a doctor after months or years of testing, fear, and frustration.

The diagnosis should be delivered by “a psychologist, social worker, or other trained professional, with the doctor playing a supportive role,” according to the report. “This approach aims to provide holistic and emotionally supportive care to individuals receiving a dementia diagnosis. 

And patients should have a list of questions — prepared for them ahead of time — to ask their providers after the diagnosis to “empower patients to … engage in meaningful discussions…about their condition and care options,” according to the report.

Among its most pointed recommendations for health care providers: Talk to patients based on their condition, rather than focusing on the end stage of the disease. And, the report adds, listen to the patient.

“Don’t put us in a box,” said Mostacero, the Air Force medic.

“We say ‘When you’ve met one person with dementia, you’ve met one person with dementia,’” she said. “Don’t give us your low expectations, There’s a lot we can contribute.”

Especially after an early diagnosis, services such as physical therapy, occupational therapy, and speech therapy can help a person maintain motor skills, function, and normal routines. 

For Mostacero’s part, a healthy diet, daily exercise and two memory drugs have helped slow the progression, she said.

“This support should not be withheld until the individual's condition reaches a certain level of severity,” the report reads.

Life, after all

On a recent afternoon — nine years after his diagnosis — the Bereshes were relaxing in the living room of his White Lake home. Coner, an overly fluffy gray cat, entwined his tail around Arnold Beresh’s legs then bounced onto a coffee table, eyeing suspiciously two Bridge Michigan visitors.

Beresh was recounting recent data about the efficacy of Alzheimer’s drugs. He’d planned to throw some punches later at his punching bag in the basement — exercises that help him maintain balance as the dementia progresses. And there were Christmas cookies to bake, too.

He chuckled, considering his picture of himself in the days after his diagnosis to his life now.

“We like to say there’s life after diagnosis,” said Beresh, “and there is.”