The Division of Services for Aging and Adults with Physical Disabilities (DSAAPD) is using the findings from a report based on caregiver focus groups held late last year across the state to enhance its current supports and develop a new approach to caregiver services. This includes the formation of the Delaware Action Network for Caregivers, a forum where caregivers can learn and collaborate with agencies supporting caregivers. Its inaugural meeting will be held in mid-November during National Family Caregivers Month.

DSAAPD released the report today, compiled by Wilder Research, which builds on the Division’s efforts to better support unpaid family caregivers throughout the lifespan.

“Family caregivers play a significant role in supporting parents, children, siblings, and other loved ones who need care for a variety of reasons,” said DSAAPD Director Melissa Smith. “Many older adults prefer to remain in their homes for as long as possible, and families often prefer to care for their children and other family members at home. However, caregiving can have major impacts on caregivers’ health and well-being. Providing supports to these individuals and helping them access the resources they need is critically important.”

Five main themes emerged from eight focus group sessions that included 38 participants:

Family caregiver characteristics and experiences

According to the AARP report, Caregiving in the United States 2020, caregiving cuts across generations, race and ethnicity, income and family composition, among other identifiers. The characteristics of the caregivers who participated in the local focus groups affirms this observation. However, the information shared by the caregivers during the focus groups showed that there is no one “typical” caregiver and no one “typical” caregiver experience. Needs and expectations vary and can be constantly in flux.

Lack of awareness of services and difficulty locating useful information

Focus group participants expressed a lack of full information about what services might be available to them as one of the most common barriers to accessing supports. In addition, focus group participants expressed frustration with the amount of time and effort required to navigate systems and find supports.

Concerns about the reliability and quality of services

Focus group participants discussed difficulties in arranging for services. Many factors contribute to this, including the limited availability of paid staff, cost of care, uncertainties about whether caregivers can trust the information or abilities of paid staff, and care recipients’ reluctance to have unfamiliar people care for them.

Financial impact of caregiving

Families are asked to make difficult choices about finances and managing necessary care. Participants discussed the high cost of medical care and the challenges of navigating insurance coverage. In addition, paid employment can be difficult to manage in the face of caregiving responsibilities.

This project was funded through grant support from the National Academy of State Health Policy (NASHP) and the John Hartford Foundation. Read the full Caregiver Focus Group Report. For more information about the Delaware Action Network for Caregivers, call the Delaware Aging and Disability Resource Center (ADRC) at 1-800-223-9074.