Using unpaid family caregivers and elder abuse in the same sentence makes for some uncomfortable language – and some uncomfortable truths.
Despite the infrequent alliances between the advocates for family caregivers and elder justice, this issue was taken up with great care in two important documents within the past year: The Elder Justice Roadmap (Stakeholder Initiative by US DOJ and HHS) and a Policy Brief: Preventing Elder Abuse by Family Caregivers (California Elder Justice Coalition).
There is general consensus that unpaid and paid caregivers are often the abusers of older, disabled adults whether in the home or in facilities. Caregivers on the front line of care have both the opportunity, but also the most stress when caring for physically and cognitively disabled adults. There are many reasons for this: inadequate screening, lack of training, few supportive services or adequate supervision to name just a few.
But both documents acknowledge that unpaid caregivers – largely family and friends – are the backbone of the long-term care system. Mostly they are unrecognized for their efforts but silently counted on to backfill care demands unfilled by public or private funded services.
For unpaid caregivers, many are on call 24/7 with little relief over the course of a year (or years). Most are providing assistance with daily care routines of bathing, dressing, eating and monitoring medications. But almost half are performing medical tasks for highly complex care needs. And millions are caring for a relative with cognitive impairments such as dementia that complicate care demands immensely.
So what can be done to mitigate potential abuse by unpaid caregivers? Experts on both efforts came to similar recommendations:
Most importantly, the dialogue started between advocates and experts in unpaid caregiving and those in elder justice needs to be nurtured and expanded. Both causes share similarities and opportunities for joint advocacy for funding, research and services.
At Family Caregiver Alliance, we are hopeful that these nascent efforts will continue at the federal level and also in the states. We hope to see every state adopt a policy platform like that of California to ensure the resources and support are available to unpaid caregivers everywhere.
About the Author: Kathleen Kelly is the Executive Director of Family Caregiver Alliance and the National Center on Caregiving. Ms Kelly has over 30 years of experience in program and state system development regarding integration of family caregivers within health and social service systems. Ms. Kelly has overseen the development of state service programs, consumer information systems, caregiver data reporting, and numerous research projects. She has advocated for family caregivers in public policy, service development, professional staff development and the media.