Kalispell, Mont. – As Susan and Gary Snow wound down their cherry juice business in northwest Montana this spring, they downsized into a camper.
They planed to move back to Snow’s hometown in Canada, but Gary started to have suicidal thoughts. He started to hit himself in the head with anything he could find and wouldn’t sleep for days on end.
Gary, who was 74 years old, was officially diagnosed with Alzheimer’s disease, but Snow thought he had Lewy body dementia, which can cause intense hallucinations and delusional thoughts.
“Every 10 minutes, he would come to me and start crying because he thought I was going to leave him,” she said.
Snow said it was “heart wrenching.” After a month of going in and out of having a crisis, Gary asked Snow for a gun.
“I thought of I don't wanna live anymore if this is what we have to go through,” she said.
Mental health providers and hospitals see more people with dementia in crisis.
Alzheimer’s is just one type of dementia. The broad family of brain diseases is widely known for impacting memory, but dementia can come with a wide range of mental health issues like delusional thoughts, hallucinations and paranoia. Those symptoms can make people aggressive or unable to care for themselves.
Hospitals, mental health providers and organizations that work with older adults in at least seven states say they’re seeing more people with dementia in mental health crises.
Hospitals, mental health providers and organizations that work with older adults in at least seven states say they’re seeing more people with dementia in mental health crises.
It can be hard or even impossible in some cases to find a mental health facility that will care for them during and after a crisis.
Concrete data is hard to come by in part because many people struggle to get a dementia diagnosis, making it difficult to track, said Margie Balfour, a psychiatrist and policy advisor for Connections Health Solutions.
Some people think memory issues are part of aging and never go to a doctor. Others may struggle to see a neurologist that can diagnose them because of where they live or long wait times.
Connections operates mobile crisis teams and psychiatric facilities in six states. The wave of people with dementia in crisis is an anecdotal trend, said Balfour, but it’s “an increasing issue.”
It’s happening in rural states like Montana but also in big cities like Seattle. A 75-year-old man with dementia was arrested during a crisis this summer, said Mason Lowe, deputy director of the Pike Senior Center & Food Bank.
Montana’s mobile crisis teams say they’ve noticed more calls tied to dementia over the past two years.
In Flathead County, where Snow lives, one in five calls to the mobile crisis team are for people over 65 years old.
Montana’s mobile crisis teams say they’ve noticed more calls tied to dementia over the past two years. In Flathead County, where Gary Snow lives, one in five calls to the mobile crisis team are for people over 65 years old.
Nearly all of those people either have a dementia diagnosis or are showing symptoms, said James Pyke, who manages the county’s program.
“Hallucinations, paranoia, just general confusion around life events, what year they're in, how old their kids are,” Pyke said.
In the past, Pyke’s team responded to someone with dementia once a month. Now calls come in almost daily.
The issues mobile teams respond to are wide ranging. Some people may repeatedly call the police because of delusional thoughts. People living alone can also struggle to care for themselves.
“So there are feces and urine in the bed, on the carpet, around the bathroom, evidence that they're not feeding themselves properly. So rotting food,” Pyke explained.
Care during and after a crisis is hard to find
Unlike a traditional mental health call, there aren’t many options to help stabilize people with dementia.
There’s only one specialized psychiatric unit for older adults in the state, which is run by St. Peter’s Health in Helena.
Unlike a traditional mental health call, there aren’t many options to help stabilize people with dementia. There’s only one specialized psychiatric unit for older adults in the state, which is run by St. Peter’s Health in Helena.
Pyke’s team doesn’t have access to a facility like that, leaving one option: the emergency room.
People are often discharged after their physical health issues are resolved and go back into crisis, repeating the cycle, said Pyke.
Treating these patients is difficult for many hospitals, said Dr. Deborah Lessmeier, who works with dementia patients.
“Psychiatry says they don't really fit within their purview because it's an organic brain disease, yet the medical people say, well, we don't have a lot we can do, it's more of a behavioral issue. So they're really fall between the cracks,” she said.
“Psychiatry says they don't really fit within their purview because it's an organic brain disease, yet the medical people say, well, we don't have a lot we can do, it's more of a behavioral issue. So they're really fall between the cracks.”Dr. Deborah Lessmeier
That leaves people with dementia stuck between the medical and behavioral health systems.
Mental health facilities won’t always take people if they have dementia. Long-term care facilities often deny people with difficult behaviors like aggression or mental health issues, according to Lessmeier. Facilities are full a lot of the time. There are also a limited number of slots for low-income people on Medicaid to get a bed in a facility, and it can take months before a bed becomes available.
Sometimes, the hospital will admit a patient if it’s too dangerous for them to return home because of mental or physical health issues. Some people have stayed in the hospital for over six months because staff struggled to find a nursing home or memory care unit that would take them, said Lessmeier. Mobile crisis teams have also struggled with the same problem.
Involuntary Commitment Laws Can Limit Short-term Care Options
In the past, patients like these could go to the state psychiatric unit, but lawmakers made it illegal to commit dementia patients to the facility following patient deaths in 2022. That law also limited when people with dementia could being committed to the few psychiatric units run by hospitals around the state.
The state hospital was never designed to care for people with dementia, said former state lawmaker Jennifer Carlson, who sponsored the legislation. “They need a different kind of care,” she said.
Missoula County Attorney Matt Jennings agrees the state hospital was far from ideal, but he said the state didn’t provide an alternative.
“There wasn't much planning in our communities. There was no money or resources dedicated to it. And the outcomes had been bad for really a lot of vulnerable and elderly folks in our community,” said Jennings.
Each state handles dementia commitments differently. Some, like Montana, have also stripped dementia from the list of conditions that allow someone to be involuntarily committed to a psychiatric facility. There are states providing the kinds of solutions Jennings is looking for.
Each state handles dementia commitments differently. Some, like Montana, have also stripped dementia from the list of conditions that allow someone to be involuntarily committed to a psychiatric facility.
Wisconsin limited involuntary commitments for people with dementia following a 2012 state supreme court ruling, but the state reworked its mental health system to better handle those patients.
“Part of what came out of that work is the development of dementia stabilization units,” said state crisis coordinator Brianne Zaborowske.
Zaborowske says the state still needs more of those resources but those specialized facilities have helped.
The Montana Department of Public Health and Human Services is working to open similar private facilities, said spokesperson Job Ebelt. The agency declined multiple interview requests to elaborate on its progress, but in an emailed statement said it was negotiating reimbursement rates with federal regulators.
Local communities are filling the gaps
Kalispell-based hospital Logan Health started a program to better support families struggling to care for loved ones with dementia and patients. The hospital started the program as it saw more dementia patients struggling with mental health and behavioral issues.
The goal is to prevent people with dementia from going into crisis. That means supporting both the person with dementia by connecting them to care but also providing support for caregivers like respite services. The program has served 115 families since starting in April.
This summer, nurse Susan Moore paid a visit to Snow’s camper to check in on Snow's husband Gary.
Snow was connected to the program after she brought Gary to the emergency room because he had thoughts of suicide.
Doctors were able to prescribe medications that helped and provide access to regular medical care
“If it wasn't for you guys and dementia program, we wouldn't be here today,” Snow told Moore.
As Gary’s mental health improved, he was able to enjoy one of the few things he could still do, play music with his friends. Gary, like many people with late-stage Alzheimer’s are still able to remember songs and even how to play music.
Snow sat watching with a big smile on her face.
That jam session was Gary’s last before he died in September. A moment like that wouldn’t have been possible if he was still in crisis, said Snow.
Montana Public Radio is part of the Mental Health Parity Collaborative, a group of newsrooms that are covering stories on mental health care access and inequities in the U.S. The partners on this project include The Carter Center and newsrooms in select states across the country.
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