Southfield, Michigan — Nearly 1 in 6 older Americans—17%—don’t see the point in getting tested for dementia until better treatments are available, according to new research. But experts say that delaying a diagnosis can mean missing out on crucial opportunities for care, financial support, and simply, more quality time.
“There’s a lot more hope than there was 20 years ago,” said Karen Schelberg, care consultation director of the Greater Michigan Chapter of the Alzheimer’s Association.
What’s the delay? On average, 3.5 years pass between the onset of dementia symptoms and an actual diagnosis. For those with early-onset dementia, that timeframe stretches to 4.1 years, according to a study published in July based on data from over 30,000 participants across Europe, the US, Australia, and China.
The hesitation often stems from fear, explains Brenda Roberts, executive director of the National Council of Dementia Minds, based in Owosso. She calls it “end-stage thinking”—a denial fueled by images of severe cognitive decline. “It becomes ‘I’d rather die than get a dementia diagnosis,’” Roberts said.
The Long Road to Diagnosis
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For Paul Seehaver, a businessman and marina owner from Rochester Hills, the path to diagnosis wasn’t about denial, but frustration. Beginning in his 50s, he found himself losing words and misplacing items. A man known for his quick wit began to fumble punchlines. A successful entrepreneur struggled to recall simple terms.
One day, confused in a Walmart parking lot, Seehaver mistakenly entered a stranger’s car. Initial medical evaluations attributed his symptoms to depression and adult attention-deficit/hyperactivity disorder. It wasn’t until nearly a decade after his first symptoms that a doctor finally delivered the diagnosis: young-onset Alzheimer’s.
Even then, the news came as a shock to friends, who struggled to understand the reality of his condition, said his wife, Debra Wagner Seehaver. “Nobody wants to go there. Nobody wants to say to their friend ‘Hey, I think you have dementia,’” she recalled.
- Early diagnosis unlocks access to new drugs that can slow cognitive decline.
- Lifestyle changes—exercise and a brain-healthy diet—can have a “powerful impact” on brain health.
- A diagnosis can qualify individuals for Social Security benefits and disability accommodations.
- It allows for ruling out other treatable conditions that mimic dementia symptoms.
- Planning for the future—financial and otherwise—becomes possible.
But diagnosing dementia is becoming easier, thanks to advancements like PET scans and blood tests. Yet, a 2023 National Poll on Healthy Aging found that 80% of older Americans are “not at all familiar” with these newer testing methods.
New Treatments Offer Hope
The FDA approved two new drugs for Alzheimer’s treatment in 2023 and 2024: lecanemab, known as Leqembi, and donanemab, known as Kisunla. While not cures, these medications can slow cognitive decline by removing amyloid plaques in the brain—a hallmark of Alzheimer’s—but must be administered during the early stages of the disease.
Lifestyle Changes Matter
Research also highlights the significant impact of lifestyle on brain health. The POINTER study, announced this summer, found that certain lifestyle changes improved cognitive function in participants. The Alzheimer’s Association has developed a “healthy lifestyle recipe” based on these findings, emphasizing exercise and the MIND diet—a dietary pattern rich in brain-boosting foods.
Beyond Medical Interventions
A dementia diagnosis can also open doors to financial assistance. Individuals may qualify for Social Security benefits or accommodations under the Americans with Disabilities Act. The Social Security Administration even offers an expedited application process through its Compassionate Allowance program for certain cases, such as Lewy Body Dementia.
Importantly, seeking a diagnosis can help rule out other treatable conditions that can mimic dementia symptoms, such as thyroid disease, vitamin deficiencies, and sleep disorders, explained Dr. Henry Paulson, director of the Michigan Alzheimer’s Disease Center at the University of Michigan.
Planning for the Future
For Brenda Roberts, the benefits of an early diagnosis extended beyond medical interventions. After her husband, Mark, received a diagnosis of vascular dementia in 2014 at age 62 (though symptoms began in his 50s), the family began to plan. They sold their homes and designed a “dementia-friendly home”—a connected duplex allowing for both independence and support.
This allowed them to continue cherished traditions, like their annual Thanksgiving gingerbread house contest. Even as Mark’s condition progressed, he was able to participate, judging the candy creations last month.
“None of this would have happened without a diagnosis,” Roberts said. Without it, she believes they would have likely separated, and Mark would have ended up in a nursing home, with the financial burden falling on taxpayers.
Resources and Support
Dementia is an umbrella term encompassing Alzheimer’s disease, frontotemporal dementia, Lewy Body Dementia, and vascular dementia. More than 200,000 Michiganders over 65 are currently diagnosed with dementia, according to the Alzheimer’s Association.
- If you or a loved one is experiencing symptoms of dementia, the Alzheimer’s Association offers information and resources, including support for those newly diagnosed. Their 24/7 helpline is available at 800-272-3900.
- The National Center of Dementia Minds provides support groups for people with dementia, their families, and caregivers.
- Explore research-backed lifestyle changes for brain health, including the Alzheimer’s Association’s 10 Healthy Habits for Your Brain and the POINTER study’s healthy lifestyle recipe.
- Michigan State University offers a 14-step tip sheet to reduce dementia risk.
