Report: Caregivers Need Help, Too
September 30, 2016 02:34 PM
The health and well-being of millions of older Americans is at risk unless the United States does more to help family caregivers who sacrifice their time and money to look after their loved ones, according to a new report released by the National Academies of Sciences, Engineering, and Medicine.
Describing caregiving as “a critical issue of public policy,” a committee of experts in health care and aging urged the next administration to swiftly offer more support to elderly patients and their caregivers as the population continues to age and shrinking families come under increasing strain, says the report. The panel of experts believes the Department of Health and Human Services should lead this effort by developing a national strategy with other federal agencies to assist the health care system and provide workplace support for family caregivers.
The report urges the Centers for Medicare and Medicaid Services (CMS) to develop and implement provider payment reforms to ensure family caregivers are identified and supported. The report also recommends that the various states create their own family caregiver support programs.
NAHC supports the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act (H.R. 3099), which has already passed the Senate and has 124 co-sponsors in the House of Representatives. The RAISE Family Caregivers Act would:
Implement the federal Commission on Long-Term Care’s bipartisan recommendation that Congress require the development of a national strategy to support family caregivers.
Create an advisory body to bring together relevant federal agencies and others from the private and public sectors to advise and make recommendations.
Identify specific actions that government, communities, providers, employers, and others can take to recognize and support family caregivers and be updated annually.
The legislation is based on a recommendation by the bipartisan Commission on Long-Term Care to develop a national plan to support family caregivers.
People who assist family members with three or more personal tasks a day devote 253 hours per month to caregiving, which is almost the equivalent of two full-time jobs. For many, taking on that responsibility means sacrificing time, pay and promotions at work, as well as simply dropping out of the workforce altogether. People 50 years and older who stop working to care for a parent, for example, lose an average of $303,880 over their lifetimes, according to the report. That can also lead to reduced Social Security benefits for those caregivers when they become eligible.
Beyond the purely economic sacrifices made by family caregivers, there is a physical and psychological toll, as well. “If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving and the nation will bear the costs,” reads the report. Family caregivers exhibit increased rates of depression, anxiety and emotional difficulties, the report found.
Leave programs exist for family caregivers, but millions of Americans lack job protections in such circumstances. The Family and Medical Leave Act covers only 60 percent of the workforce and it only applies to those who work for federal, state and local governments and private companies with more than 50 employees. But even if they can get the leave, many family caregivers cannot afford to forego 12 weeks of pay.
Certainly, one possible fix is greater use of home care services, which allow elderly patients to stay in their homes, avoid expensive hospitalizations and provides assistance and crucial expertise to family caregivers. Dealing with complicated and confusing medical devices can cause stress, with many family caregivers “learning by trial and error and fearing that they will make a life-threatening mistake,” according to the report.
The report recommends more “family-centered” care models, including checking with caregivers to ensure they are well and capable, as well as wellness visits and counseling sessions.