A new report shares the perspectives of family caregivers and the organizations that work with and serve them.
Although caregivers’ lives are varied, the needs they express fall into clear themes and provide concrete directions for policy action, according to a new report documenting family caregiver concerns and recommendations for change.
In Their Own Words, Caregiver Priorities and Recommendations: Results from a Request for Information offers the perspectives of family caregivers and the organizations that work with and serve them. The report is based on 1,613 responses to a Request for Information (RFI) from the U.S. Administration for Community Living (ACL), which is working to implement the requirements of the Recognize, Assist, Inform, Support and Engage (RAISE) Family Caregivers Act of 2017.
The research was supported by The John A. Hartford Foundation through a subcontract with the National Academy for State Health Policy’s RAISE Family Caregiver Resource and Dissemination Center.
The research team included Pamela Nadash and Eileen J. Tell, who are fellows at the LeadingAge LTSS Center @UMass Boston; LTSS Center Co-Director Marc Cohen; and Taylor Jansen, a PhD student in the Gerontology program at the University of Massachusetts Boston
The Request for Information, published in the Federal Register, contained three questions. The first two questions were open-ended and asked for detailed responses to the following statements, based on respondents’ caregiving experiences or experiences working with caregivers:
- “A pressing family caregiving need/concern I would like to see addressed.”
- “I would like to offer this specific recommendation to address my need/concern.”
A third, close-ended question gave respondents a list of issue areas and asked them to select all the issues that were important to them.
“The responses reflected the diversity of family caregivers, who cared for many different types of care recipients and were from a range of socio-economic circumstances, living across the nation in cities, suburbs, and rural areas,” write the authors. “The challenges they face are accordingly diverse, although certain themes dominated.”
Specifically, respondents requested increased support in the form of:
- Compensation to alleviate the financial pressures created by their caregiving responsibilities.
- Greater investment in workplace accommodations to enable them to maintain employment.
- Specific types of services to make the job of caregiving less difficult, including respite, information and advice, and training for the more complicated tasks associated with providing care.
“This report is only a snapshot of the dominant themes in the RFI responses, and yet it reveals the love, warmth, caring, devotion, determination, resourcefulness, and good, old-fashioned grit of the American people,” the authors conclude. “Overwhelming, however, the responses conveyed the financial, physical, and emotional stresses that caregiving creates.”
For more details about caregiver responses to the RFI, read the full report.