While family caregiving is an intensely personal issue, it is critically important to the well-being of our aging U.S. population, families and society — and must be taken seriously as a critical issue of public policy.
That’s according to a recent report on family caregiving for older adults from the National Academies of Sciences, Engineering, and Medicine. The report, developed and authored by a 19-member expert committee of which I was a member, highlights the shortcoming of both the health care and long-term services and supports (LTSS) systems that have often marginalized or ignored families in the delivery or coordination of care. And because most family caregivers are also working at a paying job, the report also addresses shortcomings in today’s workplace.
This report also presents a vision forward with a series of recommendations to provide much-needed support to the millions of families and friends caring for older adults.
The history of family care for older adults with health and functional needs in the United States is one of both continuity and change.
Family members and close friends have always been the mainstay of providing emotional support and LTSS to our older population. But converging socio-demographic trends indicate a new reality that includes fewer family members to rely on to care for a growing number of older adults, changing family structures, greater numbers of family caregivers in the labor force, and increasing diversity of families.
These trends — coupled with more complex chronic care needs, and the added frustration of navigating the bewildering, fragmented health care and LTSS systems — are factors contributing to unprecedented challenges in family care of older adults in the U.S, says the new report, “Families Caring for an Aging America.”
Evidence shows that while caregivers’ individual situations vary, family caregiving can take a toll on caregivers’ emotional, physical and financial well-being, including loss of income and career opportunities.
A new vision for the future
Our 19-member expert committee that developed the report calls for nothing less than a transformation in policies and practices affecting the role of families in the support and care of older adults with health and functional needs.
What would such a transformed system look like? It would elevate family-centered care alongside person-centered care, taking into account both the individual and the family. Principles adopted by our committee center on a transformed system resulting in a society in which family caregivers:
- Have their own health and well-being considered;
- Have rights and protections in health care, LTSS and the workplace;
- Have their preferences, needs and strengths recognized and supported by health and social service professionals to provide high-quality, culturally appropriate, person- and family-centered services; and
- Are supported in policy and practice as caregiving changes and evolves in response to shifting demographic, social, technological and economic circumstances.
Adopting these principles will require us to think and work differently.
As a member of the report’s consensus committee, my hope is that this report highlights the reality that the status quo ignores the way families of older adults live and work today, and how they experience the health care and LTSS systems. Unsupported family care for older adults with health and functional needs is unacceptable and must be changed.
Cover image courtesy of the National Academies of Sciences, Engineering, and Medicine
Lynn Friss Feinberg is a senior strategic policy adviser for the AARP Public Policy Institute. She has conducted policy analysis and applied research on family caregiving and long-term services and supports for more than 30 years.