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Family caregivers face systems navigation challenges, just part of why it is the “most rewarding, and difficult job”

Dr. Kristin Litzelman, University of Wisconsin-Madison

Family caregivers play a key role in supporting their family members or friends with illnesses or disabilities. When they receive support services and resources such as respite care or training programs, caregivers have lower burden and higher confidence in their role.(1) Yet, few caregivers use the support services available to them. One national US survey estimated that 28% of caregivers used financial resources, 23% used transportation services, and a mere 15% used respite care.(2) What explains why so few caregivers make use of these services?

A 2019 survey of Wisconsin caregivers, fielded by the Wisconsin Family and Caregiver Support Alliance, may provide some answers. Nearly three in four caregivers who responded to the survey endorsed difficulties with self-care and balancing caregiving with their other roles, such as family and work. Many also reported difficulties with understanding government support programs, finding reliable homecare providers, and having enough money to pay for care. When caregivers did not make use of services, they most frequently pointed to systems issues as a cause: lack of availability, challenges in getting adequate information about programs, or feeling too overwhelmed to start.

The survey findings highlight gaps in resource availability for caregivers and indicate opportunities for systems change that may help them access needed services. Improving systems coordination—so that agencies who provide different services can coordinate efforts to meet the needs of caregivers—would go a long way to reducing frustration and disappointment. Moreover, reaching caregivers where they are easily accessible, such as doctors’ offices, is a potentially underused avenue for connecting caregivers with other community services. Finally, the responses point to a need to support caregivers in learning how to recognize their service needs and access them.

For a more detailed overview of the findings from this needs assessment survey, check out the April 3rd 2020 webinar on “Caregivers’ Experiences with System Navigation” in the NCRAN webinar archive. After you watch the webinar, please share your feedback using this evaluation survey.

Sources

1.       Avison C, Brock D, Campione J, Hassell S, Rabinovich B, Ritter R, et al. Outcome Evaluation of the National Family Caregiver Support Program. Washington, DC: Administration for Community Living; 2018.

2.       National Alliance for Caregiving. Caregiving in the U.S. 2015. Washington, DC: NAC and the AARP Public Institute; 2015.

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