By Brian Goslow
For some battling mental health issues, it’s all about taking those tiny steps that have been avoided over an extended period of time — and having programs available to help them break old patterns. For older individuals suffering emotional issues, the challenges can be greater. The Massachusetts Aging and Mental Health Coalition (MAMHC) is there to help.
At its recent annual conference at the College of the Holy Cross, there were plenty of examples given of how properly presented self-management programs can help reverse the debilitating patterns of depression for older adults.
Robert Schreiber, medical director of the Massachusetts Healthy Living Center of Excellence, shared the story of Mary, a 60-year-old woman with agoraphobia who hadn’t regularly left her apartment for years because she was paralyzed with anxiety and an ongoing fear of the people that were around her; she wanted to travel to see her out-of-town daughter and grandchildren.
Thanks to Mary’s participation in the My Life My Health: Chronic Disease Self-Management Program (CDSMP), an action plan was developed that took Mary from short walks in her hallway to walks outside her apartment and then walks down her street, literally taking the small steps that culminated in her being comfortable enough to book a flight for an extended stay with her family.
Based on a model developed at the Stanford University Patient Education Research Center in the early 1990s, the CDSMP program is overseen in the state by the Massachusetts Healthy Living Center of Excellence and Elder Services of the Merrimack Valley, Inc. in conjunction with Hebrew SeniorLife.
The six-week, two-and-a-half-hour-per meeting CDSMP workshops are offered to adults living with the challenges of one or more persistent health conditions and are intended to encourage discussion, action planning, brainstorming, problem solving and decision making; participants receive “The Living and Healthy Living Book” and a CD with relaxation exercises on it.
Offered statewide since 2007, over 4,000 older adults have gone through the program at over 200 sites, including senior centers, healthcare organizations, adult day health programs, assisted living facilities, nutrition programs, hospitals, clinics, senior housing and family caregiver support programs.
“Some of the people are overweight, some have high blood pressure and some have medical conditions that affect their everyday life,” said Susan Poludniak, Healthy Living Program Manager for Elder Services of the Merrimack Valley, Inc.
The topics covered include dealing with difficult emotions, physical activity and exercise, communication skills, medication usage and making informed treatment decisions that lead to a feeling of achievement that can greatly improve not only a person’s mind, but also health.
“We want them to succeed,” Poludniak said. “When they succeed with a goal in their activity plan, we see incremental behavioral changes. Positive change is happening.”
Poludniak said the findings from a 2013 national study of CDSMP effectiveness, which surveyed 1170 participants, are significant. They included:
•a 10 to 16 percent decrease in fatigue, pain, shortage of breath and sleep problems;
•a 12 percent increase in the number of participants who are “moderately active” at the end of the program vs. at the beginning;
•a 21 percent improvement in depression;
•a 6 percent improvement in quality of life; and
•odds of an emergency room visit were reduced 32 percent over a 12-month period.
In a separate presentation, Schreiber noted that CDSMP participation led to better health and healthcare value and lower cost; the post-program estimated savings is $713.80 per participant.
During her presentation at Holy Cross, Poludniak shared a letter from one of the program’s participants, Helen Lamoureaux, who participated at the Chicopee Senior Center.
“This program has made me aware that setting simple goals and carrying them out, turning negative thoughts into positive ones, following a healthy diet and exercise program and taking prescribe medicines can lead to a productive life, even while living with chronic arthritis,” Lamoureaux wrote. “I hope more seniors can avail themselves of this educational program.”
A second, unnamed person, a caretaker for one of the program’s participants, wrote that the workshop had helped her husband deal with problems with many aspects of the depression he suffered related to having Parkinson’s disease. “He learned how to make weekly action plans and solve problems related to his condition,” she wrote. “These weekly workshops helped him to get out and meet other people, share his stories, and build lasting friendships.”
Those unable to physically attend the workshops or who live in areas where they aren’t offered can participate online.
Melissa Donovan, assistant director of the Healthy Living Program, said program leaders first try to identify what factors may be causing depression, then they identify healthy activities that might help the participant. “Depression isn’t a normal process of aging,” Donovan said, adding that there are many people who aren’t willing to talk about their depression or what’s causing it.
Untreated depression is the number one risk factor for people 65 and older committing suicide. “A large percentage of them saw their doctor the day or week before the suicide,” Donovan said, observing that depression is often ignored.
Depression is also a huge barrier to healing — especially with diabetes,” she said. “We’re trying to lower health care costs and by not diagnosing depression, we’re not going to get there.”
Stress can also have a major impact on health. Meditation, said keynote speaker Ann Webster, can be a significant factor in reducing stress. Webster is staff psychologist and instructor in medicine at Harvard Medical School and the director of the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital. “Being quiet for an hour is one of the most refreshing things you can do,” she said during her presentation, “Aging Without an Expiration Date: Mind Body Medicine for Successful Aging.”
Mass General’s Mind/Body Program for Successful Aging is a nine-week program that teaches relaxation exercises that combine daily periods of silent meditation and diary keeping, which has the dual purpose of getting participants to review their daily conduct and how each act affects them and to slow down their day.
“People walk around with pain and store it away,” Webster noted. “It’s a matter of calming down and getting in touch with what’s inside of you. This can be done by writing it down — and down again. I want my patients to know what happens to their bodies when they have stress — it affects their central nervous system, somatic nervous system and automatic nervous system.” She said physical stress holds warning signals that when ignored, can lead to major health problems.
People who are steadfast in following through on the program tend to have certain characteristics she calls, “The Five Cs”: commitment, control, challenge, community and closeness, which they passionately engage in as a result of successfully following through on the program’s goals and in many instances, reinventing their lives.
“A lot of the people who are in my groups are retired or they’re widows or widowers; they’re isolated and don’t have face-to-face contact, so I want them to vitally engage their life,” Webster said.
To do this, she asks them to close their eyes and think about and identify what they want in terms of their career, educating their mind, relationships, creative things, play, health, spirituality, as a volunteer and self-transformation. Upon opening their eyes, they share their findings, some of which were clear goals for things they wanted to achieve in the weeks, months and years ahead.
The program’s success stories include a man who was once housebound but now regularly serves tea and coffee to visitors at a local hospital and a woman who achieved her longtime dream of becoming a beekeeper. “Now she’s passing out little jars of honey to everybody,” Webster said. “So it’s an extremely important exercise and it reverberates the rest of people’s lives.”
Getting the necessary help for mental health problems can be doubly difficult for those with disabilities — especially when dealing with people who think their situation leaves them unworthy of the time, effort and money needed to assist them in living a better life.
Denise Karuth of Florence faces health challenges that include being legally blind, multiple sclerosis, hypochondria and a pain syndrome that can leave her unable to talk for one to two weeks at a time. She has also suffered from shingles. Some medications tend to make things more confusing for her. She gets around with an electric wheelchair and the assistance of a beloved guide dog, Fendi.
In addressing “Reframing Aging with Disability: From Impairment to Possibility” and how she has survived her doubters, Karuth, the former director of the Boston Self Help Center, said a key component of achieving your best possible level of wellness is knowing your limits — and dealing with them.
“Who has something they don’t do well — perhaps using computers or taking criticism?” Karuth asked those in attendance, noting that people don’t wear T-shirts advertising their shortcomings. “You don’t want to show you’re vulnerability,” but in not doing so, she said, “it doesn’t show your full self.”
For her, living with a visual disability has been like wearing that T-shirt. “It labels you before you have an identity,” she said.
Despite her long list of health issues, Karuth has the power to make a room smile. She shared historical research on how people with disabilities have been judged over the years.
Karuth faced challenges getting an education. “I was mistreated for my clumsiness (due to her blindness) by other students and teachers until I graduated at 17,” Karuth said, adding that those closest to her didn’t offer her the support she needed. “My family didn’t understand what I was going through because there were no common experiences.”
Living in Brighton while attending Boston College, she spent dozens of hours waiting in freezing cold weather for a commuter train into Boston because either no one would take the time to help her board or there wasn’t what was needed for her to get onboard herself. “Drivers regularly didn’t have the key for the handicapped ramp,” she said. “Finally, one day, a driver took his key off his key ring and told me he was giving me my own key.”
Ableism — discrimination or prejudice against individuals with disabilities — can be carried out through avoidance behaviors that include turning away, staring, avoiding physical contact and emotionally distancing.
“People with disabilities are seen as weak and needing help,” she said. They aren’t “deserving of charity or having little to look forward to in life and shouldn’t expect to marry and have children,” Karuth said, adding there is a belief that “one should not raise the hopes of people with disabilities and we should not have expectations of them.”
When faced with these kinds of attitudes, she said, people with disabilities feel they shouldn’t attempt to pass themselves off as or act normal; they should remain in the closet or they should deny the impact of the disability, which causes some whose life would be vastly improved by use of a wheelchair to not use it, having been convinced by others that it would be a prison. They also avoid asking for help when they need it.
“They tend to overcompensate and underestimate their self worth, skills and ability and as a result, isolate themselves and lower their expectations,” Karuth said in her talk. “In many instances this leads to engaging in substance abuse and feeling despair and isolation.”
The fact she’s made it despite all the obstacles life has thrown at her — and finding a way to smile, Karuth stood as proof that those with handicaps have just as much to contribute to society as anyone else, if not more. “As you can see, the problem isn’t the disability, it’s the oppression,” she said.
Older residents with disabilities — be they physical or mental — face a double whammy when it comes to having the services they need funded.
“It’s a very subtle thing to provide services for people as they age,” said MAMHC chair Jim Callahan. “Being marginalized as you age is worse if you have a disability. It’s a challenge to have people feel that they’re important, that they have choices, that they’re part of their community and have meaningful relationships. It’s important for them to have services provided in the right way.”
Frank Baskin, LICSW, noted that the proposed 2015 state budget has no funds budgeted for senior mental health services. “We asked for $350,000,” he said, noting that MAMHC has requested the restoration of Geriatric Mental Health line item 9110-1640 under the Executive Office of Elder Affairs.
“From 2007-2009, the legislature appropriated money to fund geriatric mental health services through the Executive Office of Elder Affairs,” said an MAMHC letter to state legislators. “This funding was discontinued in 2010, even though the problem continues to grow.”
Noting that one in four people age 55 and older will experience behavioral health disorders that are not part of the normal aging process, the letter said restored funding would allow once again for services to elders in crisis that would include in-home mental health counseling as well as training on elder mental health issues for first responders, care managers, nurses, social workers and other providers and would ultimately save the state money by avoiding more expensive institutional placements.
