Data tells a deeper story of younger-onset Alzheimer’s in N.H.

Monitor staff
Published: 4/6/2018 10:02:19 PM

While advancements are being made to treat older patients with Alzheimer’s, patients with the younger-onset form of the disease often face delayed diagnosis and a lack of resources.

“We still typically think of Alzheimer’s as an older person’s disease, and that can be very challenging for younger people who are struggling with it,” said Melissa Grenier, manager of the New Hampshire Alzheimer’s Association.

The Alzheimer’s Association estimates that 5.5 million people – 1 in 10 individuals – age 65 and older are living with Alzheimer’s. An estimated 200,000 people under 65 have the disease, although this number may be underreported.

In the Alzheimer’s Association’s 2018 annual report released last month, officials wrote that there is “greater uncertainty” about estimates for younger-onset groups.

That uncertainty began as early as 2006, when the Alzheimer’s Association released a report titled “Early Onset Dementia: A National Challenge, a Future Crisis.”

“There ... remains an inadequate amount of data available on the actual number of early onset individuals and their condition,” the report concluded.

“Additional research is needed to develop a more precise figure, but the proposed range provides a plausible first estimate and indicates that the number of Americans with dementia that first occurs before age 65 is much higher than is generally acknowledged.”

But despite the call for additional research on younger-onset groups, the numbers in the last 10 or more years haven’t changed much. It can be very difficult for someone under 65 to receive an accurate diagnosis of Alzheimer’s. A correct diagnosis can take connections, money and years of persistence.

In New Hampshire, most younger-onset patients are diagnosed by specialists in Boston. Dr. Bradford Clark Dickerson at Massachusetts General Hospital said he’s had 125 patients over the last decade from the Granite State.

“They come here because they have trouble getting an accurate diagnosis elsewhere,” he said. “It’s not something most neurologists are used to seeing.”

Of the 21 newly diagnosed younger-onset patients that came to the Alzheimer’s Association in New Hampshire this year, most were working professionals, according to the organization’s database.

“It’s fair to say they all have secondary degrees and professional careers,” Grenier said. “They’re all lawyers or accountants or they’re in the medical field, or social workers.”

Because it’s a smaller population, younger-onset patients don’t always fit into the communities that have been established for memory care. The Alzheimer’s Association encourages people to try to maintain a healthy social life after a diagnosis, but this can be hard for younger people.

The Alzheimer’s Association hosts events called “Alz Meet Ups,” where caregivers and individuals with Alzheimer’s participate in activities like apple picking. The Concord Visiting Nurses Association has held a memory cafe since 2013, where they teach classes, do art and music therapy.

But Concord Regional VNA Vice President of Community Engagement Keliane Totten said they usually see people in their late 60s or older.

“We’ve certainly had a few younger people who have come and gone over the years, but they can be still working, need someone to help to care for their kids,” she said.

This is also true in increased care settings like nursing homes or adult day cares.

“Nursing homes are used to seeing frail older people, heart conditions, breathing problems, mobility issues,” Grenier said. “When they come across something that is unique, that rocks the boat a little bit.”

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