Program trains inmate caregivers to watch over aging prisoners with dementia

Alzheimer’s respects no boundaries. It doesn’t care if someone is rich or poor, a man or a woman — or behind the bars of a cell.

Just as society as a whole is greying, so too are those incarcerated in prisons. And for inmates with Alzheimer’s or another form of dementia, living with the disease can be even more difficult and fraught with danger than it is for those on the outside.

But an innovative program begun in a California prison in 2009 is changing how inmates with dementia are cared for within its wall, and it could prove to be a model for other correctional institutions in both the United States and Canada.

The program at the medium-security California Men’s Colony in San Luis Obispo involves six volunteer inmates with 10 years of exemplary behaviour who act as “buddies” to fellow prisoners with dementia, making sure they receive medical care, providing social support and watching their backs, as it were.

The six “social aides” were trained as caregivers through the Central Coast chapter of the U.S. Alzheimer’s Association, which had been approached by the prison’s lead psychologist because she recognized the need for specialized care for aging inmates.

Sara Bartlett, a clinical social worker and area director of the association’s regional office, said prisoners with dementia are officially called inmate patients, but their social aides refer to them as “our guys, which I thought was kind of sweet.”

“They were very compassionate, protective, connected with the inmate patients,” said Bartlett, who outlined the program Tuesday at the International Conference of Alzheimer’s Disease in Toronto.

Prison life can be especially difficult for inmates with dementia, whose disease-related “acting-out” behaviours can be risky in the potentially volatile and rough-and-tumble environment behind barbed wire-topped fences.

“It is very difficult … the inmate patients were being punished or corrected for behaviours that were really brought about as a result of their environment and their symptoms,” she explained in an interview. “And one of those was the need to wander, to pace about. And roommate issues — imagine being in a cell with a roommate and having some of the repetitive behaviours that are common with dementia?”

Prisoners with dementia are often targets of other inmates, she said. “The victimization risk was huge. There were inmates trying to get their things or get them to give them things, try to provoke them just for fun so they would engage in a behaviour where they would be the ones who would get in trouble.

“That was one of the things that really surprised me was how protective the social aides were of the inmate patients, to make sure they weren’t victimized by other inmates.”

Yet the social aides, who were assigned to inmate patients in a separate block of the prison and paid $50 a month, also had to learn to cope with the pressures of caregiving during 12-hour shifts, seven days a week, said Bartlett.

Like any caregiver, they were taught how to look after themselves and the value of teamwork, including asking another aide for a respite by saying, “I need a time out, I need to get out of here. Can you cover for me?” Aides were also allowed to shuffle their inmate patients for better personality fits.

“But most of the challenges weren’t related to directly caring for their guys,” said Bartlett, noting that the greatest difficulties occurred because of institutional rules that often don’t allow for flexibility in accommodating needs of inmates with mental or physical health issues.

“They really did see it as a positive experience. Most of their complaints were about coming up against the prison system.”

Dr. Duncan Scott, a psychiatrist at Queen’s University in Kingston, Ont., who works with aging prisoners at nearby Warkworth Institution, called the program at the California prison “absolutely phenomenal” work.

“And it’s work, no doubt, that we’ll be trying to replicate up here at some time in the future,” he said of Canada’s correctional system.

At Warkworth, a medium-security prison housing almost 600 inmates, Scott said he works with a few inmates with dementia.

“They can act out, they can become depressed and they can become psychotic, and that’s why I see them,” he said. “The classic person would be a lifer who probably did some horrible, heinous crime back in the ’50s or early ’60s. They went in in their early 20s or so … and they would be entering into their 60s, 65.”

Such prisoners are prone to Alzheimer’s or another type of dementia, often at an earlier age than their counterparts outside correctional facilities, because of the lives they have led.

“These are individuals who aren’t out there being health-conscious individuals. Usually they’ve been locked up (in cells), so they’re in there smoking usually, and they’re doing chemical comforts whenever they can. So they haven’t treated themselves in the best way and they’ve had to defend themselves in a mano-a-mano way.”

Physical fights — before and during incarceration — can cause head injuries that later manifest as dementia, said Scott, adding that inmates with the progressive brain-destroying conditions are often agitated, irritable, and in a state of high anxiety.

While no formal buddy program exists at Warkworth, Scott said fellow inmates have stepped up to look after those with dementia or other debilitating health problems related to age.

“They sit and talk to them, read to them,” he said. “This is their life, this is their home, this is their village, so these individuals are taken care of.”

Still, more formal programs are going to be needed as prison populations undergo the same aging process as the rest of society, said Scott. Queen’s University, for instance, is in discussions with Corrections Canada about ways to provide increased psychiatric support and education within prison walls.

“This is something that we’ll need to undertake … The dementia and the sickness that goes along with aging is going to be profound and it will reflect itself in the prison system, and probably they’ll be a lot more severe.”