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Monthly bills came due; taxes, too. Frank Duffy had the money to pay. What he was losing was the capability.

That was in 2008, ahead of his diagnosis of Alzheimer’s disease — the most prevalent form of dementia that the Alzheimer’s Association says

affects an estimated 6.7 million Americans.

Melanie Duffy, of Sunbury, Pennsylvania, said she and her husband were married 35 years before symptoms presented. His condition worsened far beyond memory loss, and he grew short-tempered and increasingly violent, she said.

“This nice, loving man I knew was gone. That was the hardest,” she said.

 

Melanie and Frank Duffy in November 2019. Melanie Duffy placed her husband, now 86, in a memory center last fall to receive full-time professional care. Courtesy photo

Duffy placed her husband, now 86, in a memory center last fall to receive full-time professional care. She visits weekly and leaves on the promise of a return from a quick shopping trip.

“I can’t go more often. It’s too stressful. I hate seeing him the way he is now. It’s so hard to separate the man he was and the one I remember from the man he is today,” she said.

Over the past two months. reporters from CHNI newspapers nationally have been exploring the many painful aspects of dementia, its impacts, costs and possible treatments, in a special report that begins today.

They have also looked at the development of drugs that have shown promising signs for slowing the development of, but not yet curing, dementia.

Those involved in the research and treatment of dementia say that the neurological changes that trigger it develop an estimated 20 to 25 years before symptoms show. By the time a disease is identified, the decline in mental acuity can become rapid.

Short-term memory loss

The loss of short-term memory is typically the first symptom of impairment for Alzheimer’s, according to Dr. Anton Porsteinsson, who leads the Alzheimer’s Disease Care, Research and Education Program at the University of Rochester Medical Center in New York.

“Then, we begin to see impairment in logic, reasoning, decision-making, visual-spatial function, recognizing spaces,” he said.

Communication becomes puzzling, disrupting the ability to write or speak and to even understand another person’s words. Handling the daily routine turns beyond troublesome, prolonging or preventing simple tasks like cooking, cleaning, paying bills, even using utensils. Personalities shift, causing or heightening anxiety, agitation and depression.

And America’s population is getting older. By 2030, the youngest of the baby boomers will be 65 — the age where the risk of developing a form of dementia grows fast, too.

An estimated 1 in 9 senior citizens are living with Alzheimer’s in the U.S. The Alzheimer’s Association estimates the disease accounts for 60% to 80% of dementia cases. Other forms of dementia include frontotemporal dementia, vascular dementia and Lewy body dementia.

There is crossover of symptoms, according to the association. For example, patients with behavioral variant frontotemporal dementia experience changes in their personalities or behaviors, but their memory can remain largely as it was pre-diagnosis.

Hallucinations, wild swings in attention span and physical changes in body movement are hallmarks of Lewy body dementia, but memory loss might not be evident until the disease progresses.

There is some good news: Incidence rates are trending downward. Rand Corporation found in 2022 that dementia-related diagnoses fell by one-third between 2000 and 2016.

But other research finds that it’s increasingly more deadly. Data from the Alzheimer’s Association shows deaths from Alzheimer’s alone grew by 145% from 2000 through 2019. It’s the seventh leading cause of death in the U.S., the Centers for Disease Control and Prevention shows.

By 2050, the Alzheimer’s Association says the number of seniors with Alzheimer’s dementia is projected to rise to nearly 13 million.

What the future holds

The abnormal brain changes that cause Alzheimer’s can be pared down to the buildup of plaques and tangles of two different, naturally occurring proteins causing disruptions in the function of neurons, the brain’s messaging transmitters.

Frontotemporal and Lewy dementias also result from protein buildup, while vascular dementia results from damaged blood vessels disrupting blood flow to the brain.

As treatments are explored, so are underlying causes of dementia. From a clinician’s perspective, it’s frustrating, said Dr. Riddhi Patira, an investigator with the Alzheimer’s Disease Research Center and leader of its Frontotemporal Dementia Consortium at the University of Pittsburgh.

“We don’t know the exact cause. We still don’t know,” Patira said. “If you don’t know, how do you find a treatment?”

In early July, the Food and Drug Administration gave traditional approval to the medication lecanemab, marketed as Leqembi.

Porsteinsson said the drug removes plaque buildups associated with Alzheimer’s across 18 months. It’s not a cure, it doesn’t stop progression of the disease and its side effects include swelling and micro-bleeding of the brain.

It’s also part of a complicated regimen and is only intended for patients with mild Alzheimer’s. The drug is administered biweekly by IV and incorporates PET scans or a spinal tap.

Its manufacturer, Eisai, estimates the wholesale cost at $26,500 annually. For patients, Eisai estimates out-of-pocket costs from a few dollars daily, or nothing at all, to $14.50 daily, depending on insurance coverage.

“It’s a treatment that isn’t for everyone,” Porsteinsson said. “It’s likely this kind of approach will become one of the standards of care.”