Getting Real on Family Caregiving for Those with Dementia

Getty Images/iStockphoto

If you haven’t seen this recent issue of AARP The Magazine, I encourage you to take a look at the cover story because it addresses topics that are front and center here at the AARP Public Policy Institute: family caregiving and dementia.

The two A-list actors featured on the cover—Blythe Danner and Hilary Swank—play mother and daughter in a movie, “What They Had,” which highlights an issue of great importance. In the film, Danner’s character has Alzheimer’s, and the family dynamic is complicated further with Swank’s character clashing with her brother over their mother’s care.

“It’s about a family,” Danner says of the film. “It’s about what normal people are dealing with–so many people are taking care of parents.”

One of those people is the film’s writer-director, Elizabeth Chomko, who went through something similar with her own grandparents, to whom the film is dedicated. And both Danner and Swank know about family caregiving from firsthand experience. In the AARP The Magazine article, the two discuss with candor their respective experiences caring for loved ones and the toll it took on them. Danner describes caring for husband Bruce Paltrow, who had oral cancer, while Swank discusses becoming her father’s sole caregiver after he received a lung transplant (causing her to hit “pause” on her career for three years).

The AARP Public Policy Institute (PPI) and AARP as a whole are extremely focused on issues surrounding Alzheimer’s and dementia—and supporting the people who deal with it every day. This past June, AARP donated $60 million for Alzheimer’s research.

At PPI, we are focused on both understanding all of the issues around Alzheimer’s and providing concrete solutions for people. (As a solutions-oriented organization, internally we consider ourselves a think-and-do tank.) One example of our concrete solutions is a video that shares hands-on insights on administering medication to a person with dementia. The video, which tackles such issues as dealing with resistance to taking medications, was produced through the Home Alone Alliance, a partnership of public, private, and nonprofit sector organizations seeking to change the way health care professionals interface with family caregivers. The video is one in a series addressing family caregiving tasks.

As for the think part of PPI being a think-and-do tank, PPI is a leader in the area of family caregiving, including with respect to dementia specifically. A report and blog from my colleague Lynn Friss Feinberg examines evidence-based caregiver supportive services for family caregivers of persons living with dementia, highlighting several programs that have been shown to improve one or more aspects of the quality of life of family caregivers and providing recommendations on further advancing the issue.

The film “What They Had” shines light on some important and complex topics concerning dementia and family caregiving. No doubt this portrayal of some of these challenges, while fictional, rings true for millions of people. AARP and PPI, therefore, will continue to tackle these very real-life issues head on, advancing our understanding of them and providing solutions people can use.

Susan Reinhard, RN, Ph.D., FAAN, is a senior vice president at AARP, directing its Public Policy Institute, the focal point for AARP's public policy research and analysis. She also serves as the chief strategist for the Center to Champion Nursing in America, a resource center to ensure the nation has the nurses it needs.