When Ken Jue was the director of a community mental-health center in New Hampshire, he felt it was his obligation to attend the funerals of clients who had died. And he was attending a lot of funerals. “During one of the funerals when I was looking at pictures of the client who had died, I realized that this just didn’t seem to be right,” he said. “People really were not living to their 70s.”
Jue began investigating the trend and found grim statistics. Americans with severe mental illness die on average 25 years younger than their peers, not from suicide or drug abuse, but from preventable physical ailments like smoking and obesity. “This really is the largest recognized health disparity in the United States,” said Dr. Stephen Bartels, a professor of psychiatry at The Dartmouth Institute. “A tragic part of the stigmatization of mental illness is the marginalization of these individuals.”
For people with severe mental illness, maintaining physical health can seem impossible. The obstacles that prevent anyone from eating well and exercising are multiplied for this vulnerable population. “In our research group, we refer to it as the perfect storm,” Bartels said.
People with severe mental illness, including bipolar disorder and schizophrenia, suffer from diseases that make it difficult to find motivation. In addition, many drugs used to treat psychosis cause weight gain and make it impossible to feel full after eating. These challenges are compounded by the fact that many people with severe mental illness live in poverty, which makes access to healthy food and a safe space to exercise limited. “All these things conspire to reduce the life expectancy,” Bartels said.
For Jue, that fact was unacceptable. “I decided to see if I could level the playing field,” he said. “If people with severe mental illness could have access to the same resources, they would have a fairer chance to live the same life span.”
Jue developed InSHAPE, a program aimed to bring physical wellness to people with severe mental illness. The program focuses on smoking cessation, nutrition, and exercise. Participants work out with a certified personal trainer at a public gym, which is important for strengthening an individual’s ties to the community as well as becoming more physically healthy.
Program participants are paired with a health mentor, who is a certified personal trainer who works with them at a public gym, often the local YMCA. When Bartels heard about the program that Jue had started, he was immediately interested. “I thought it was something that has huge potential,” he said.
Bartels led a team of researchers at Dartmouth that began studying InSHAPE; the research was funded first by the Centers for Disease Control, and later by the National Institute of Health. An initial study showed that within a year, 49% of program participants had a clinically significant improvement in health outcomes, which included weight loss and improved cardiovascular functioning. In a second study that took place not in New Hampshire but in urban environments in Boston, 51% of participants saw improvement. “Clearly this is an evidence-based practice with very robust data on success,” Bartels said.
After seeing those successes, Bartels helped 48 mental health centers around the country implement InSHAPE and was able to study the results in a variety of settings. Although that research is ongoing, the program is now recommended by SAMHSA, the Substance Abuse and Mental Health Services Administration.
It has not been a challenge to recruit mental-health centers or individuals to participate in the study. “This is the easiest study we’ve ever done for participants,” Bartels said. “People with mental illness really do want to feel well and be healthy. They really want this. But it comes down to the financing issue.”
Preventative healthcare is notoriously underfunded, especially on medicaid, which many people with mental illness are on. Yet Bartels is confident that InSHAPE will save money in the long run. “We suggest that if you look at the decrease in weight and cardiovascular risk, and translate that into dollars associated with those ailments, the program very clearly pays for itself in the long run,” he said. However, for now, community centers must rely on grants or reallocation of funds in order to focus on physical wellness.
Despite the challenges, community centers are eager to provide programing that addresses the physical-health disparities of this vulnerable demographic. In New York City, Lantern Community Services serves formerly homeless people, many of whom have mental illness. The organization launched a wellness program a year ago that incorporates personal training, fitness classes, and healthy nutrition and saw a 59% decrease in hospitalizations of clients.
“We’re really excited about it,” said Karisa Antonio, director of arts, culture and fitness for Lantern. “I can tell this is just the beginning for us.” Antonio pointed out that wellness programs don’t have to come with a huge price tag. “Even if you don’t have the resources, there are so many creative ways to bring fitness and movement into the programs that you have,” she said.
Lantern currently has a Walk Around the World program, where participants in some housing units are given pedometers to track how far they walk as a team. One house has been particularly successful, with participants logging more than two million steps. “They’re past Chicago and headed to New Orleans,” Antonio said with a laugh.
In addition to the measurable increase in health outcomes, that sort of involvement from clients has had unexpected benefits at Lantern. “It’s empowering to exercise,” said David Brand, a certified personal trainer who works with clients with mental illness, including at Lantern. “This is an opportunity for people to make clear decisions for themselves.”
Ken Jue found a similar effect from InSHAPE. “I think that for so many decades, too many mental-health professionals felt that we needed to tell people what the prescription should be,” he said. “Instead, InSHAPE puts the responsibility and control in the hands of the participants. There are other health social studies that find when people feel they are in control of their health, they do better.”
One of Jue’s favorite stories involves a client with a schizophrenia diagnosis. The man was unable to hold a job and was living in a dirty, rundown apartment. Yet he joined InSHAPE on his own with the goal of hiking Mount Monadnock, a mountain in southern New Hampshire. “When he made that commitment, he stopped smoking that day,” Jue said.
Today, the man has a full-time job, lives in better circumstances, and grows his own vegetables.
“He says he still hears his voices, but he says the difference is ‘I run my life. Nobody else and no other thing runs my life,’” Jue said. “That sense of control is so important to people’s sense of self integrity.”