Raising awareness, enabling support for unpaid caregivers

Family caregivers have an important job; supporting their needs will make their work and lives easier

Imagine caring for a child with medically-complex special needs while balancing responsibilities for other family members and trying to maintain a full-time job. Or, consider caring for a parent with dementia whose needs take time away from one’s own family and work.

These are examples of family caregivers —unpaid, and often, untrained — who help parents, spouses, children and adults with disabilities, and other family members with varied needs such as bathing and dressing, managing medications and more complex medical care, and everyday tasks such as preparing meals and keeping track of finances. These are just a few examples of the work they take on so their loved one can receive the care and supervision needed and remain at home.

There are more than 43 million people nationwide who serve as unpaid caregivers. The tasks caregivers take on, as well as the caregivers themselves, are diverse. Given the critical role they play in the continuum of care, it is important to understand how to assist and support their work. To do this, the National Academy for State Health Policy contracted with the LeadingAge LTSS Center @UMass Boston and Community Catalyst to learn what specific services and supports caregivers need and to develop recommendations for change.

Pamela Nadash, PhD, Associate Professor of Gerontology at the LeadingAge LTSS Center at UMass Boston and Eileen J. Tell, a Gerontology Institute Fellow, the project’s co-leads, were part of the team that analyzed the more than 1600 responses.

The research team began by analyzing over 1600 responses from family caregivers and caregiver organizations collected from a recent Request for Information (RFI). The RFI asked respondents to talk about their most pressing needs or concerns as a caregiver and what they would specifically recommend to address those concerns.

“Although caregivers’ lives are as varied as the challenges they face, the needs they express fall into consistent themes across those varied life experiences,” said Nadash.

Those themes – concerns with financial well-being, the need for workplace accommodations, acquiring the skills and knowledge to confidently perform caregiver tasks, the need for respite care, help finding qualified caregivers and more – provided the basis for the next stage of the research: listening sessions.

Tell and Nadash conducted 12 consumer-focused listening sessions on topics such as the types of services and supports that family caregivers need and the financial and employment issues they face. Additional focus groups centered on special populations: “grand families” and other kinship care, youth caregivers (18 and younger), and Latino caregivers.

“These listening sessions were critical to identify the types of programs, supports and services family caregivers require to focus efforts on where needs are greatest, and to put forward strategies and tactics regarding how best to meet those needs,” said Nadash.

The discussions generated a list of priorities the caregivers saw as the most valuable to continue their work caring for a loved one. Those seen as urgent include: caregiver training and coordination; adult daycare services to allow a caregiver the ability to go to work or tend to other household concerns; direct pay or tax incentives; workplace accommodations; respite care; and the use of technology, such as monitors, cameras and sensors to enable a caregiver to observe their loved one’s safety at home.

“The next stage of the project is to develop a plan to operationalize these strategies,” said Tell, who, along with the project team, has already begun work on brainstorming sessions to develop viable solutions.

 

Additional Leading Age LTSS Center @UMass Boston staff working on this project:  Marc Cohen, PhD, Co-Director of the LeadingAge LTSS Center at UMass Boston, student research assistants Tyler Jansen and Andrew G. Alberth. Staff from Community Catalyst: Carol Regan, Senior Advisor, Siena Ruggeri, Program Associate, and Mark Rukavina, Business Development Manager.

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