Caregiver, Huntington's Disease

More than 30 years ago, a small task force of families and community leaders in San Francisco came together to create support services for those struggling to provide long term care for a loved one who did not "fit" into traditional health systems: adults suffering from Huntington's disease and other debilitating disorders. The diagnoses were different, but the families shared common challenges: isolation, lack of information, few community resources, and drastic changes in family roles.

The task force's early efforts had three lasting results: the formation of Family Caregiver Alliance; the genesis of California's statewide network of Caregiver Resource Centers; and the beginnings of a national movement to recognize the immense contribution of family caregivers to the long-term health care of the ill and elderly in our country.

The mission of Family Caregiver Alliance (FCA) is to improve the quality of life for family caregivers and the people who receive their care. For over 40 years, FCA has provided services to family caregivers of adults with physical and cognitive impairments, such as Huntington's, and other types of dementia. Our services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Ongoing support is available with FCA, also now on a digital service platform. FCA is a longtime advocate for caregivers in the areas of policy, health and social system development, research, and public awareness, on the state, national and international levels.

The services, education programs, and resources from FCA are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving.