Sick To Death > Chapter 3 > Caregiver Programs

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Caregiver Programs

Those aiming to improve end-of-life care increasingly recognize the need to support family (sometimes called "informal") caregivers. Programs aimed at caregivers facing end-of-life issues have yet to be widely developed, although some promising ideas have been proposed or are just getting under way. The National Family Caregiver Support Program, which received congressional funding of $155.2 million in 2003 (Administration on Aging 2003), has allocated funding to provide respite care for family caregivers. Many national organizations, such as the National Alliance for Caregiving and the Family Caregiver Alliance, provide resources and referrals for family caregivers.

California has a statewide program of caregiver resource centers (CRCs) that serve families and caregivers of cognitively impaired adults. This model system gives caregivers a way to access almost all available services that they might need: information, consultations, support, and training. The aim throughout is to reinforce the caregivers' ability to provide and manage needed care. Moreover, the centers integrate their services within existing programs and coordinate among them. This makes a more reliable system for family caregivers, and they are measurably more comfortable with the service system and more satisfied with services that are actually utilized (Friss 1993).

Hospitals are recognizing the important role of caregivers in caring for the chronically ill. The United Hospital Fund supported an initiative in seven hospitals in New York City that aimed to respond more effectively to the needs of family caregivers during and after hospitalization of their sick relatives. Including family caregivers as participants and explicit beneficiaries of planning was regularly possible, and implementation shows that hospitals could shape the caregiving experience. The engagement of caregivers helped mobilize reforms in care processes as well (Levine 2003).