Caregivers: The Silent Sorority

Sixty-two million people in the United States are providing unpaid caregiving to family members and friends, offering support valued at $450 billion.  This “silent sorority” (although one-third of them are men now) were the focus of AAWGT’s latest education session, Caregiving and Caregivers, held Wednesday, Feb. 8 at the Moyer Community Recreation Center in Annapolis.  

A panel of three distinguished speakers fielded questions posed by moderator Maureen Cavaiola on who these caregivers are, how caregiving has changed in modern times, and the physical, emotional, and financial costs of caregiving.  The panelists were Lynn Friss Feinberg, senior strategic policy advisor at the AARP Public Policy Institute; Mary Chaput, program director for the Respite Care Referral & Family Caregiver Support Programs at the Anne Arundel County Department of Aging and Disabilities in Maryland; and Carol Marsiglia, an RN and director of ACCESS Consulting Group, who coordinates care for individuals with disabilities and for older adults.

The typical caregiver is a 49-year-old woman who works and who provides about 20 hours of caregiving per week, typically to her mother.  But there are also grandparents raising their grandchildren, parents caring for children with disabilities, and people caring for a sick spouse.

Caregiving has changed a lot, according to Ms. Feinberg.  “It used to be a private, expected role for women.  But it was shorter in duration because people died at younger ages a generation and more ago.  They didn’t have the kind of chronic illnesses that often last for years now. Because of this trend, we can expect to see more people in their 60’s and 70’s caring for parents who are living into their 90’s and beyond.”

She also described the “very clear” costs to the caregivers and cited research that shows caregiving’s negative effects on the financial and physical health of caregivers, as well as tactics they can use to arrange for breaks and cope with “run-away emotions.”
Mary Chaput described her efforts to get the word out to caregivers that a call to the Department of Aging can result in “more assistance than they can possibly imagine. We are the only county in Maryland with a respite care referral program of trained and background-checked caregivers.  You call in to get help for your Mom or Dad, and we can give you the names of five or six people.”  She also described their family caregiver support program that includes dementia workshops, support groups (including a men’s only support group) and their annual caregiver wellness day and annual caregiver conference.  

 Marsiglia from the ACCESS Consulting Group discussed her work with families with disabled children who are technology dependent, autistic children, and older adults who want to “age in place.”  ACCESS can put in place a cost effective plan to help these seniors accomplish daily tasks , and it saves money for the system, she explained.  Their “Take a Break” program provides respite care for families, such as the mother of a disabled child who was provided a caregiver that allowed her to have one-on-one time with her other  child; and a daughter who was able to secure a male caregiver to take her father with Alzheimer’s disease out to a sports bar for some fun socializing while she got a much-needed break.  

“There is a lot we can offer caregivers,” Ms. Chaput added.  “We just have to talk to you.  And we need your voices out there to tell our politicians they can’t cut this funding.  We need more, not less, money for seniors and caregivers.”

Photo:  Judy Coughlin, AAWGT, Panelists Lynn Friss Feinberg, Carol Marsiglia, Mary Chaput, and Maureen Cavaiola, AAWGT Moderator