BANGOR, Maine — Roughly 600 Mainers around the state are waiting a year to get an evaluation at Northern Light Acadia Hospital’s Mood and Memory Clinic.
That’s the average wait time that Dr. Clifford Singer, chief of geriatric mental health and neuropsychiatry at Acadia Hospital, estimated. But the range is anywhere from six months to three years, he said Wednesday. His colleague referred a person to the clinic recently who was told the wait would be 22 months, he said.
Patients have a 90-minute to two-hour initial appointment that includes various assessments of their medical history and brain and cognitive functions. It’s when many families breathe a sigh of relief, because they can finally speak with a medical professional and receive clarity on their loved one’s condition.
Sometimes that’s Alzheimer’s disease, frontotemporal dementia or other cognitive conditions, and other times it’s a sleep disorder or depression contributing to their symptoms, Singer said.
While the crisis in dementia care isn’t new, the wait times at Acadia Hospital — one of two private psychiatric care hospitals in Maine — are concerning for a state that has the oldest population in the country. For a patient experiencing abnormal memory loss, experts say time is everything. Early detection, a diagnosis and setting up a treatment plan are crucial so their quality of life doesn’t continue to deteriorate.
“This is the epidemic that is lost among the other epidemics,” Singer said. “Apart from COVID and the crisis in health care that it has created, there’s the mental health crisis. Acadia Hospital is responding to that by building a new pediatric [wing]. Meanwhile, the crisis in dementia care has been on a slow boil for a decade.”
The Alzheimer’s Association, which has a Maine chapter, points to workforce shortages nationwide and within the state as a major problem. Maine is among 20 states considered a “dementia neurology desert,” said Drew Wyman, executive director of the Maine chapter. That means they are projected to have fewer than 10 neurologists per 10,000 people with dementia in 2025.
Not only is there a lack of neurologists and geriatricians — there were 36 in Maine in 2021 — but the state also needs more direct care workers such as nurse aides and nursing assistants, he said.
Their jobs are low paying, high stress and exhausting, which contributes to high turnover rates, Wyman said. Another factor is that young people are leaving Maine instead of moving here, and the state needs to find a way to attract them and provide proper training, career development and other opportunities.
As patients await appointments and other services, family members and friends often become caregivers. In an annual report released in March, the association estimated there were 51,000 dementia family caregivers in Maine last year, providing 87 million hours of unpaid care valued at $1.9 billion, which places a significant burden on them, Wyman said.
To address the crisis, Maine needs 71 geriatricians in 2050 to serve 10 percent of those 65 and older, according to the report. To serve 30 percent of that demographic, the state needs 213 geriatricians.
As for home health and personal care aids, there were about 17,380 in Maine in 2020, figures in the report show. By 2030, 18,710 will be needed, or a 7.7 percent increase.
While telehealth offers flexibility and Northern Light Health recently hired Dr. Justin Otis — who is helping make a dent in the waitlist — the hospital is limited in terms of size and staffing capacity, Singer said. The hospital system also loses money because it depends on Medicare to reimburse services, he said.
Acadia Hospital’s Mood and Memory Clinic has 11 staff members, ranging from medical assistants to neuropsychiatrists, who can keep track of about 1,000 patients.
The hospital’s $42.9 million expansion, though good news for children and adult patients needing inpatient psychiatric beds, will not grow the Mood and Memory Clinic. Moving the clinic to a new space will locate patients closer to the parking area.
Medical professionals with expertise on various dementias and related conditions are hard to come by, and they often want to remain at academic medical centers in big cities, Singer said. A new residency program at Acadia Hospital, expected to start in summer 2024, will train psychiatrists on site and should help with future recruitment.
Acadia Hospital is also in high demand because it serves patients from around the state and has the Robert C. Strauss Neurocognitive Research Program in collaboration with Northern Light Eastern Maine Medical Center, Singer said. Alzheimer’s disease research is the focus.
“We’re the only research center north of Boston and the only one like this in Maine, so we provide access to clinical studies for people,” he said. “That’s a priority of ours to be able to offer that for people in Maine.”
Patients can participate in clinical studies much sooner than they can get an evaluation at Acadia Hospital, he said. But it’s possible that because of their long wait for a diagnosis, they miss the window for a particular study.
“We know that we don’t have the capacity to evaluate everybody and certainly to continue to stay engaged and treat everybody,” Singer said. “Most hospitals don’t have the ability to sustain a program like ours. We have to develop strategies by which primary care providers and community agencies can do some of this work.”
In Aroostook County, a new model is being tested with a memory care center opening in Presque Isle this summer. It means residents and their families won’t have to travel to Bangor or Portland for dementia care.
The Maine Center for Disease Control and Prevention recently updated its state plan for Alzheimer’s disease, which outlines priorities and recommendations, but it hasn’t yet been released.
Other options available to patients are MaineHealth’s Maine Medical Center’s outpatient Geriatric Psychiatry Clinic in Portland, MaineGeneral Health’s Dartmouth Geriatric Medicine clinic in Augusta and a small geriatrics program at Eastern Maine Medical Center, Singer said. There are specialists with private practices as well.
Northern Light Health also offers MAINAH, a no-cost registry for people interested in healthy brain aging. It provides a newsletter and notifies subscribers about upcoming research studies.
Wyman encouraged people with questions to call the Alzheimer’s Association’s 24/7 helpline at 800-272-3900. The Maine chapter also offers support groups around the state and New England.