Supporting Family Caregivers in New Jersey: Expressed Needs for Help Providing Home and Community-Based Care

In New Jersey as in the nation, family caregivers play a vital role in helping older adults and individuals with disabilities live comfortably in their own homes and communities. Currently, the State’s Medicaid program is undergoing a transformative shift, re-balancing long-term care from institutional settings to a more patient-centered home and community-based service model. Additionally, various healthcare quality improvement efforts emphasizing the prevention of hospital readmissions have increased awareness of family caregivers’ value in patient care. For example, the Agency for Healthcare Research & Quality funded the development of the Re-Engineered Discharge (RED) Toolkit which targets family caregivers as a critical element in the success of the discharge plan.1 The Caregiver Advice, Record, Enable (CARE) Act, passed in New Jersey in 2014 and being promoted across the country by AARP, requires specific caregiver engagement activities as part of a patient’s transition from hospital to home.

Given the importance of family caregivers in the health care system, support for their needs becomes integral to successful patient care. In 2008, interviews conducted with four focus groups of 40 family caregivers in New Jersey and California investigated how they describe their needs for professional help.3 Caregivers reported a wide spectrum of needs that fell into thirteen categories such as assistance in finding available services, learning direct care tasks, understanding disease processes, and addressing end-of-life issues. The 2009 New Jersey Family Health Survey (NJFHS) followed up on these findings by inquiring of a statewide sample of unpaid family caregivers how much help they needed in eight of the identified categories.i Table 1 shows the questions asked of caregivers in the NJFHS, ordered from the highest priority need to the lowest (as ranked by the focus group participants). This Facts and Findings uses the data collected from these and other questions in the NJFHS to describe caregivers in the State, the prevalence of their needs, and characteristics associated with expressing need for help in their role as caregivers.