Spotlight On: Difficulties Faced by Aging Caregivers

The Disabilities Leadership Council is continuing its series spotlighting important issues facing the special needs community. Today, we’re discussing the difficulties facing aging parents of individuals with special needs. These parents must take care of themselves as they grow older, but they must also continue to provide for their children with special needs into adulthood. Issues also arise when the primary caregivers pass away. This event put a great financial strain on the individuals with disabilities who are left behind. It also exacts an emotional toll, as these individuals must cope with a sudden and drastic change in their life.

Fortunately, scientific research is being done into the challenges facing these families. Studies into aging families with a developmentally disabled son or daughter have been conducted jointly by Dr. Marsha Mailick Seltzer of the University of Wisconsin-Madison and Dr. Marty Wyngaarden Krauss of Brandeis University. On Dr. Seltzer’s website, http://aging.wisc.edu/research/affil.php?Ident=60, the stated aim of her research into this field is to “examine the pattern of age-related changes and transitions in these families, how the changes affected the son or daughter with the disability, and the antecedents and consequences of out-of-home placement of the adult child.”

When asked why she chose to conduct this line of research, Dr. Seltzer said, “We became interested in this research topic more than 20 years ago to investigate an unstudied and poorly understood phenomenon: the dual challenge facing aging parents of adults with developmental disabilities…Our goal was to identify factors that led to resilience in these families.” Dr. Seltzer also said that some solutions to ease the difficulties faced by these families have emerged from her extensive research. She said, “First, it is important for families to plan ahead and to involve the entire family, including the adult with disabilities, in this planning process. It also is sometimes helpful for the person with developmental disabilities to move to his or her own home, or move to some type of supported living arrangement, before the parents die, so that both transitions do not have to happen at once… it's important to continue to provide services to those adults who have significant behavior problems no matter what age they are. Indeed, there is a lifelong need for supportive services and older adults have just as much of a need and right to them as younger persons.”

When asked about this new research, Disabilities Leadership Council founder Stuart Flaum said, “I think Dr. Seltzer has recognized that we have an aging generation of parents and it’s compounded by the dynamics of caring for an individual with disabilities. This is a very important conversation for all families to have and I commend Dr. Seltzer for her science-based approach.” Hopefully, with increased knowledge about these problems, new and innovative solutions can emerge, like the ones already proposed by Dr. Seltzer and her team. The Disabilities Leadership Council believes that new scientific developments are critical to our mission, as they are essential to generate better outcomes and improve the quality of life for individuals with disabilities.

To read the full interview with Dr. Marsha Mailick Seltzer of the University of Wisconsin-Madison, please visit http://docs.google.com/View?id=d56tc3v_4fmgv4ccp.