“There’s virtually no research on what works for weight loss with such young people,” said Richard Fleming, PhD, adjunct associate professor of psychiatry.
Now a new research program at UMass Medical School’s Eunice Kennedy Shriver Center will study a family-based weight loss and weight maintenance approach with this population. The NIH-funded program grew out of pilot studies completed between 2005 and 2011 that tested variations to the current study, which is open to adolescents and young adults with a variety of intellectual disabilities and their family members. Recruitment for the new program starts in May and the first session will launch in fall 2013.
Parents must typically take the lead in helping young people with intellectual disabilities to adopt healthier habits.
“The parent needs to be an effective coach and change agent,” Dr. Fleming said. “They learn that from our study staff and by doing what amounts to ‘homework’ each week.” The one-year pilot study showed that while every family is a little different, giving parents special training in behavioral change can improve results of such programs.
“The messages you give also have to be much simpler,” Fleming explained. Instead of in depth discussions of nutrition and exercise physiology, “We talk about how if you eat a bit less every day you will lose weight, and if you make the effort to get moving, you’ll feel better and burn some extra calories.”
Families will meet once a week with dietitians and behavioral counselors, engage in group activities and even get personalized counseling. A six month post-program follow up for some families will track participants’ progress keeping the weight off, and offer advice on avoiding relapses. Adolescents and young adults with moderate to mild intellectual disabilities may be eligible, including those with Down syndrome, autism spectrum disorders and other conditions.
“We’re trying to teach the families a whole variety of skills, including how to select healthy foods, prepare nutritious meals, make better buying decisions and stay active,” said Fleming. “We do very little lecturing but have lots of hands on activities and games.” The families are taught how to stock their refrigerator, schedule and do physical activity, use non-food rewards and essentially change their activities and environment to encourage healthier living.
Such wellness instruction could have a profound impact on these young peoples’ lives. “We hope that many of them will become more independent, and even live on their own at some point,” Fleming said. Forming healthy habits now, with their parents and maybe other family members or peers, could prevent health problems later.
Others working on the program include Linda Bandini, associate professor of pediatrics; Carol Curtin, research assistant professor in family medicine & community health; James Gleason, instructor in pediatrics; and Melissa Maslin, project manager. The Shriver Center leadership has long recognized the lack of research, training and services related to the health of people with intellectual disabilities. Over the past decade, the center has built a strong research program that includes epidemiological, observational and interventional studies on health and wellness for such individuals. This weight loss program is funded for up to four years and could serve as many as 48 families.
Related links:Autism at Shriver part 1: Teens get moving, have fun