Caring for a loved one with chronic or disabling conditions is a daily struggle for millions of American families. For decades, these intensely personal and family needs have generally been viewed as private issues and largely overlooked in public policy, although it would cost an estimated $450 billion to replace that care.
But that may be changing.
The federal Commission on Long-Term Care has taken an important step to elevate family caregiving as a public issue that can no longer be ignored. Although the Commission could not agree on how to help individuals and their families pay for long-term services and supports (LTSS) comprehensively, their final report to Congress addresses the information and support needs of family caregivers — an isolated and unpaid workforce that fills big gaps in health care and LTSS.
The Commission’s report recognizes that millions of family members and friends who serve as unpaid family caregivers provide complex chronic care with little preparation for their roles. One of the Commission’s fundamental principles is that “family caregivers should be identified and assessed for their needs, especially when care plans are dependent on them, and they should receive the support they need to continue providing care to their loved ones.”
The steps endorsed by the Commission to strengthen family caregiving, which Chairman Bruce Chernof characterized as “one of the most fundamental and transformative recommendations in the report,” call for:
- Including family caregivers and their needs in assessment and care planning processes, in electronic health and LTSS records, and as key members of care teams
- Ensuring family caregivers have access to relevant information through technology to facilitate communication and decision making
- Promoting research to study caregiver interventions to see what supportive services work best and for whom
The Commission also recommends that Congress require the Department of Health and Human Services to develop a broad national strategy to support family caregivers. This strategy should identify specific and effective actions that government, communities, and others can take to address the challenges facing families in their caregiving roles. It should also accelerate the development of caregiver support services to help families avoid burnout and improve the experience of care for the individuals receiving supportive services and their family members.
In the not too distant future, the “caregiver support ratio” will start to plummet when the first baby boomers begin turning 80, the age at which the need for LTSS increases. By 2030, only 4 potential family caregivers will be available for every person 80 and older, down from a high of more than 7 to 1 in 2010. By 2050, when all the baby boomers have reached old age, the ratio will fall to less than 3 to 1, and more individuals with LTSS needs may need to rely on paid services for all or a part of their care.
It is time to respect and support family caregivers and get this right. If not, many of us will be on our own when we need help the most.