Mike Merritt could tell his younger brother’s mind was slipping.
About three years ago, his brother Philip Merritt was 16 years into serving a long sentence at Western Illinois Correctional Center in Mount Sterling.
Philip Merritt, who was 70 at the time, began struggling to put together sentences and understand what others were saying. Then he could only grunt in response and, eventually, he stopped talking altogether.
“My brother was an extrovert, always chatting,” said Mike Merritt, who would talk to his brother at least three times a week. “He was talking normal, then suddenly, there was something off.”
Merritt learned his brother had dementia with aphasia. He was eventually moved to the prison infirmary, but his condition continued to deteriorate.
“Prison was the cause of my brother’s Alzheimer’s, I have no doubt about that,” Merritt said.
A research effort at Northwestern University hopes to learn more about how incarceration can be a risk factor for dementia, like Philip Merritt’s.
The university was recently awarded a grant for a first-of-its-kind study on how incarceration affects health, age-related conditions and risk factors for Alzheimer’s disease and other dementias. The grant from the National Institutes of Health totals $20 million over five years.
Several studies have explored the connection between poor health and incarceration, but this study is investigating how all the conditions of prison can worsen someone’s health, said Linda Teplin, the study’s principal investigator.
“This is the first study ever to look at how the dose of incarceration has affected health and aging,” Teplin said.
Studying incarceration as a “dose,” Teplin said, means investigating how long and how frequently someone was incarcerated, at what age, what type of detention center they were in and how recently they were imprisoned.
“When you study anything in epidemiology as a risk factor for disease, you look not just at, ‘Yes or no, does the person have that risk factor?’ But you look at the dose of that risk factor,” Teplin said.
To predict the chance of cognitive decline, people need to be studied before they develop dementia to help identify risk factors, Teplin said. Alzheimer’s is the most common form of dementia.
No one has counted how many people in American prisons have dementia. One study estimates that more than half of the 400,000 incarcerated elderly will develop dementia by 2030.
It’s possible his brother would have developed dementia whether or not he was in prison, Mike Merritt said. But he’s convinced his brother’s incarceration was a culprit and worsened the disease’s progression.
“Prison, that’s a traumatic environment, 24/7. Over the years, that trauma builds up,” Merritt said.
Kathryn Bocanegra, a professor at the University of Illinois Chicago who researches criminal justice reforms, says research has substantiated how Alzheimer’s is associated with traumatic experiences like incarceration.
Bocanegra’s current research, done with the Darren B. Easterling Center for Restorative Practices, is exploring how to build reentry programs that help people rehabilitate and fully rejoin society.
Incarceration “can generate a sense of permanent civic disenfranchisement,” Bocanegra said. “The same thing can happen with their health: incarceration can leave someone with permanent physical impacts and diseases, like dementia.”
Teplin is building on work she started in the 1990s with the Northwestern Juvenile Project. That effort, which Teplin still leads, was created to track the health and outcomes of incarcerated youth. With this new grant, researchers will continue studying that original group of 1,829 people, now in their 40s.
“This is a new question for us,” Teplin said. “We’ve studied only the health needs and outcomes. We have never studied how incarceration affects health.”
Teplin also hopes their work will help limit the harm incarceration does and make detention facilities more about rehabilitation than punishment.
Illinois is under a federal court order to improve the health care provided in Illinois Department of Corrections facilities. Part of the consent decree requires the state to identify how many inmates have dementia; develop a screening process for diagnosing dementia; and determine what resources, staffing and services are needed to care for inmates with dementia.
The Illinois Department of Corrections did not respond to requests for comment.
Joe Coleman Act
Once Mike Merritt realized what was happening with his brother, he started doing everything he could to get Philip out of prison.
“He was lost,” Merritt said. “I was scared. He’s got this dementia. Our whole family, we were on edge all the time, worried for his safety.”
Prison is no place for someone with Alzheimer’s, he said. He knew his brother wasn’t getting proper care. He doesn’t think his brother even once saw a neurologist. Merritt was grateful his brother was eventually moved into the infirmary, but he knew that wasn’t a long-term solution.
“Maybe if he got the proper medical care when he first started showing those symptoms, they could have helped him,” Merritt said.
While exploring ways to get his brother released, Maria Burnett, an attorney with the Illinois Prison Project, reached out to Mike Merritt. She explained how she could petition for Philip Merritt’s release through the Joe Coleman Medical Release Act.
The law, signed by Gov. JB Pritzker in 2021, allows incarcerated people who are deemed “medically incapacitated” or terminally ill to petition for early release from the Prison Review Board.
Since the act took effect in 2022, the Illinois Prison Project has helped nine people with dementia successfully petition for their release.
“A lot of people currently incarcerated with dementia are simply undiagnosed just because of abject medical neglect,” Burnett said. “All prisons are highly punitive environments, but for those with dementia, it’s impossible to obey the rules because they cognitively can’t understand what’s happening, which can lead to further unwarranted punishment.”
In Philip Merritt’s case, he was often misunderstood in prison. At one point, he was disciplined for “unauthorized movement” after he was found wandering because he was lost.
It’s rare in the prison environment for people to receive preventive care, let alone be monitored for potential signs of diseases like dementia, Burnett said. There are no requirements to screen for dementia.
“If we’re going to live in a society of life sentences, that means end-of-life care is a reality in those spaces,” Burnett said. “But I don’t think it makes sense — financially or practically — to try to turn prisons into nursing homes or to try to imagine that we’re going to provide end-of-life palliative care for people going through very painful deaths. There is no longer any penological purpose.”
It took about eight months to get Philip Merritt released once Burnett and the Illinois Prison Project got involved. He left prison last November and lives with his brother in Oak Forest. The brothers, both in their 70s, grew up on the South Side.
Several relatives live nearby and help look after Philip Merritt. And he now has access to care he never had behind bars. He sees a speech therapist and a physical therapist. When he first got out, he needed a cane to get around. These days, he can walk on his own.
“His health has improved since being home, there’s an obvious difference. He’s more relaxed, he’s used to us being around him,” Mike Merritt said.
“I’m amazed. I didn’t think he’d ever get out.”