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Delaying dementia diagnosis wastes precious time, Michigan experts warn

Mark Roberts, left, was diagnosed with vascular dementia at age 62. That was in 2014, and the planning that began immediately, including building a “dementia-friendly home,” has helped sustain family traditions, like the annual gingerbread building contest, said his wife, Brenda. With a diagnosis of early onset Alzheimer disease in 2014, Paul Seehaver family, right, was able to help him continue working at Home Depot, even though the former business owner was no longer able to work computers or equipment. He died in 2023. (Photo courtesy of Brenda Roberts and Debra Wagner Seehaver.

Editor note: This story was originally published by Bridge Michigan��(bridgemi.com), a nonprofit and nonpartisan news organization. To get regular coverage from Bridge Michigan, sign up for a free Bridge Michigan newsletter ��().” 

by Robin Erb, Bridge Michigan

Delays in diagnosing dementia mean lost opportunities — for treatment, for financial help and for planning a future that can extend precious time with family and friends.

“There a lot more hope than there was 20 years ago,” said Karen Schelberg, care consultation director of the Greater Michigan Chapter of the Alzheimer Association, based in Southfield.

But in a study published in July, researchers it takes 3.5 years, on average, between a person onset of symptoms and their dementia diagnosis. For those with early-onset dementia, it even longer — 4.1 years, according to the , which is based on data from 30,257 participants in 13 previously published studies in Europe, US, Australia and China.

Brenda Roberts calls it “end-stage thinking” — a denial caused by images of bed-bound people and empty stares in the final stages of dementia.

“It becomes ‘I’d rather die than get a dementia diagnosis,” said Roberts, executive director of the , based in Owosso.

In Paul Seehaver case, it wasn’t denial as much as trying to get a diagnosis. After all, the Rochester Hills businessman and marina owner was in his 50s when he began to lose his words and misplace items.

A man who loved to make people laugh now would fumble the punch lines.

A man who’d built a business, owned an Oakland County marina, did overseas mission work, and lived his life “buzzing here and there” now couldn’t find simple words.

Confused in a Walmart parking lot one day, he climbed into a stranger car.

One doctor said it was depression; another diagnosed him with .

It was nearly a decade after his first symptoms before a doctor called the couple — his wife, Debra Wagner Seehaver, was driving him to work by now — with the diagnosis: .

Even then, it came as a shock to those outside his immediate family, Debra Wagner Seehaver said.

Well-meaning friends were at a loss, she said.

“Nobody wants to go there. Nobody wants to say to their friend ‘Hey, I think you have dementia,” she said.

In fact, nearly 1 in 6 older Americans — 17% — believe that testing for dementia “was not worth doing until better treatment and prevention options,” according to the conducted in 2023 by University of Michigan researchers.

But many people also don’t know that Alzheimer and other dementias are much easier to diagnose now than in years past through and blood tests, for example. The same 2023 national poll found that 4 in 5 older Americans were “not at all familiar” with blood tests now available for dementia testing.

There are other reasons for the delay in diagnosis, too. Individuals or loved ones may dismiss the symptoms of possible dementia — the slips of the mind, the miscommunications or even changes in personalities.

“Everyone attributed it to ‘He has so much going on. He so busy. You’re always zipping here and there,” said Seehaver of her husband, who at 68.

Complicating matters, there a shortage of neurologists and specialists who can diagnose, said Schelberg at the Alzheimer Association.

But all of these obstacles, Roberts and others say, mean years of lost opportunities for treatments and that can slow decline.

The importance of being able to plan can be a relief itself.

“If I can give a person and their family more precise knowledge about what the future is going to hold for them, that is important. Even if it doesn’t lead to a cure or a therapy, it can help them plan for the future,” said Dr. Henry Paulson, director of the Michigan Alzheimer’s Disease Center at the University of Michigan.

There are several benefits for early diagnosis of dementia, he and others said.

Among them:

• New drugs, new hope: In 2023 and 2024, the US Food and Drug Administration approved two new drugs for the treatment of Alzheimer: lecanema, known as , and donanemab, known as . While neither is a cure, they can slow cognitive decline by removing the abnormal buildup of beta-amyloid, the protein in the brain buildup tied to Alzheimer. They must be taken during the early stages of Alzheimer.

• ‘Powerful impact’ habits: Emerging research confirms that lifestyle changes have a “powerful impact” on brain health, improving cognition. The , announced at the Alzheimer’s Association International Conference in Toronto this summer and simultaneously in the Journal of the American Medical Association, found that certain lifestyle changes improved study participants’ mental acuity. Using those findings, the association created a , which includes exercise and the .

• Financial resources: People with dementia may qualify for benefits or accommodations under the Americans with Disabilities Act. In some cases, such as a diagnosis of Lewy Body Dementia, the Social Security Administration speeds up the application process through its program.

• Ruling out dementia: Seeking out a doctor for possible dementia diagnosis can help rule out other health issues that are “absolutely treatable” — thyroid disease, B12 deficiency, folate deficiency” and even sleep problems that lead to cognitive decline, Paulson, at the University of Michigan, said.

• Planning a ‘dementia-friendly’ future: Finally, an early diagnosis allows time to regroup and make plans for the years ahead. After all, people live years, even decades, after diagnosis.

Planning for the future is much greater than financial planning, experts told Bridge. Roberts knows — not only from her role as the National Council director, but by her own story.

Her husband, Mark, was 62 in 2014 when he was diagnosed with young-onset , although the symptoms had begun in his 50s.

The former head of HVAC operations at Alma College, he’d always been at ease with tools and repair jobs. His work began to slip. He seemed confused at times — unable to follow directions.

At home, a simple job repairing a door jamb one day turned into an uncharacteristic tirade as he failed again and again to cut the wood to the right measurement, she said.

There were miscommunications, forgotten conversations and tears.

The couple separated for a while as the family searched for answers.

One doctor said he didn’t have dementia.

Brenda Roberts sobbed in the parking lot outside the office.

“I was a wreck,” she said.

A gingerbread tradition

After a primary care doctor finally added the dementia diagnosis in Mark medical records in 2014 — confirming what had become increasingly clear to the family for years, the family set about planning.

The Roberts’ and their eldest daughter, Tracey, sold their homes to design what they call “our dementia-friendly home,” Roberts said.

It a sort of connected duplex — two separate homes that connect with double doors. It allows the two families their private space, but also assistance as Mark condition worsened over the years.

The house has allowed the family to continue traditions together, too.

Last month, the family held their annual Thanksgiving gingerbread house contest. Mark, who now is in advanced stages of dementia, slipped to their side of the house for a nap, reappearing in time to judge the candy constructions.

All of this was possible, Brenda Roberts said, because of the ability to diagnose Mark changes in 2014 and plan for what lay ahead.

In the alternative storyline — the one without a diagnosis, the Robertses undoubtedly would have permanently separated, Brenda Roberts said. Mark would “probably be on his own by now and in a nursing home, where someone else (taxpayers) would be paying for his care,” she said.

Instead, their family is closer than ever, she said: “None of this would have happened without a diagnosis.”

This first appeared on and is republished here under a .

by Sara Swanson

Sara Swanson is an editor, writer and a founder of the Manchester Mirror.