The 'Burden' of Family Caregiving Never Ends...
By Anna Song Beeber, PhD, RN, Assistant Professor at the University of North Carolina at Chapel Hill and a Robert Wood Johnson Nurse Faculty Scholar
A common view in our culture is that residential long-term care services, such as nursing homes and residential care/assisted living communities, are a replacement for family care provided in the home. In general, older adults and families want to avoid long-term care placement, in part because they fear loss of independence, loss of a home life, and neglect at the hands of staff. Thus, a bulk of the research literature has focused on measuring, preventing and intervening to reduce the burden on family caregivers with the goal of avoiding nursing home placements.
As clinicians, we try to work with older adults and their family caregivers to preserve function and safety, and to find the best community-based support services – all in the hopes of preventing the need for residential long-term care services and keeping the older adult in the home.
At the same time, family caregivers work hard to provide what their family members need, often at a high cost; financially in terms of lost wages, as well as costs to caregivers’ physical and psychosocial health.
All of this work to prevent the use of long-term care services can create the suggestion that, once an older adult enters residential long-term care, the system and the family caregiver have failed to meet the older adult’s needs.
Furthermore, it is often assumed that once care is transferred from the home to a residential long-term care service, the caregiver “burden” will decrease or go away.
However, the research literature indicates the opposite – family caregivers can have increased guilt, stress, burden, worry, depression, and health decline after their loved one enters residential long-term care.
As a nurse researcher who has devoted my career to improving the quality of care in both community-based and residential long-term care settings, I am impressed each and every day by the perseverance of our older population and the exceptional work of our devoted family caregivers, as well as the tireless clinicians and researchers who are attempting to make the day-to-day lives of older adults better, regardless of whether they live at home or in residential long-term care.
But I still wonder: Are we doing a disservice to view care of older adults in terms of “burden”… especially if the “burden” never ends?