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“During the course of my husband’s illness, I found that I needed an awful lot of help. It was all so sudden, the problems so devastating, the legal affairs so overwhelming, that I needed help from every direction.”

  —Suzanne Harris
     Cofounder, Family Caregiver Alliance

In 1977, “Alzheimer’s” was not yet a household word—or even a widely recognized illness. The words “family caregiver” were not part of the public health vocabulary. Yet, that first meeting sparked profound changes: it marked the beginning of a national movement to recognize and support family caregivers as the mainstay of long-term care in the United States—and it marked the birth of Family Caregiver Alliance. 

The volunteer group came to understand that long-term caregiving is not only a private family matter, but a health and public policy matter as well, and they began discussing the need for programs to aid caregivers like Sue and Anne.

The group extended its reach to legislators in Sacramento and Washington, knocking on doors, refusing to be ignored. As a result, in 1979 landmark legislation initiated by then-Assemblyman Art Agnos was passed in California, which enabled the organization—originally called Family Survival Project—to develop a pilot project to test services for this previously unrecognized population.

Based on real-life needs and experiences, Family Survival Project (the name was changed to Family Caregiver Alliance in 1993) developed practical support services for those struggling to care for loved ones who did not “fit” into traditional mental health systems: adults with Alzheimer’s disease, Parkinson’s disease, stroke, Huntington’s disease, ALS, traumatic brain injury or other cognitive disorders. The program grew as media coverage attracted the attention of families throughout the Bay Area,

and subsequently became the first voluntary, community-based organization in the country to respond to the challenges of caring for loved ones with serious cognitive disorders striking after age 18. The “Family Survival Project” became the Bay Area’s Caregiver Resource Center, serving six counties.

The FCA support program currently includes many of the services conceived of in those early days: information; education; publications; telephone (and now e-mail) consultations to provide families with specialized information and referrals; in-home

needs assessment; development of short- and long-term care  plans for the family; legal and financial counseling; individual, group and family counseling; support groups; regional databases of supportive services; and respite—an important part of our service package since the agency’s earliest days.

Additional Bay Area FCA programs such as caregiver retreats, post-placement support groups, work and eldercare consultations, weekend camps for individuals with Alzheimer’s, services for nontraditional families, multicultural and multilingual programs and others have resulted from in-depth discussions with our clients about their needs.

In 1984, legislators acted to ensure that all Californians had access to innovative support services, establishing ten additional Caregiver Resource Centers (CRCs) throughout the state, replicating the FCA model.

Legislation also designated Family Caregiver Alliance as the Statewide Resources Consultant (SRC), to coordinate the system under the California Department of Mental Health, to operate an information clearinghouse, develop education programs and publications, and to conduct research and document needs and services throughout the state.

Although originally FCA focused on cognitive disorders, recent Administration on Aging funding has allowed us to offer our direct services to caregivers caring for older loved ones affected by other chronic health conditions.

Wider Scope for FCA

Building on the expertise developed through our local and statewide roles, in 2001 the National Center on Caregiving (NCC) at Family Care-giver Alliance was established to advance the development of programs and policies for caregivers in every state in the country. The NCC also operates a national information center for caregivers to locate services and programs nationwide.

Over the years, we not only have expanded our geographic scope but our service approach as well, making full use of technology to enhance our programs. We offer telephone workshops and classes, and video and web-based educational programs. We use technology to collect data, disseminate information and enhance personalized services; FCA was one of the first social service organizations to have a presence on the Internet. We currently operate three websites: www.caregiver.org, www.Link2Care.net, and www.CaliforniaCRC.org.

We have seen additional remarkable changes over the past three decades that affect the national long-term care landscape. Many of these changes will dictate legislative action now and for years to come:

• People are living longer, requiring more years of support.
• More women—the traditional caregivers—are in the workforce and are unavailable to provide full time care to loved ones.
• They also marry and have children later, so many are members of the “sandwich generation.”
• There currently is a shortage of paid long-term care workers, which promises to get more severe as the population ages.
• Programs such as adult day health care offer innovative alternatives to facility care. Other creative respite programs, such as
• our weekend camps for people with Alzheimer’s and our caregiver retreats, offer families a break from care demands.
• Changes in healthcare and long-term care shift both cost and responsibility for the care of frail elders and people with disabilities onto families. People are discharged “quicker and sicker” from hospitals.
• Family caregivers are slowly being recognized as an integral part of the  healthcare team.
• The national Family and Medical Leave Act (FMLA) and California’s Paid Family Leave Act offer caregivers a way to take temporary time off from their jobs to care for loved ones. Paid family leave is under consideration in other states as well.
• The definition of “family” has expanded to include LGBT families, extended families and, simply, friends. Many legislators have experienced the challenges of long-term care within their own families, and now better understand the complexity of the issues. The media likewise are more aware of caregiving issues and challenges.
• Many more organizations throughout the country, from AARP to the  Red Cross, recognize caregivers and are proactive in offering information and support.
• The National Family Caregiver Support Program (based in part on the FCA model) was established under the Older Americans Act, so caregiver support services now exist in all 50 states, although the type of support varies greatly from place to place.
• The Lifespan Respite program, just recently signed into law, aims to provide systems of accessible, community-based respite care services for family caregivers of children and adults with special needs.

Challenges to Come

We have seen many successes. But there are enormous challenges ahead as we look at the high cost of medical care and the aging population. The Baby Boomers, now immersed in their caregiving roles, will require care themselves within a few years.

According to Executive Director Kathleen Kelly, who has been with FCA almost since the beginning, “So much has changed since 1977. But our dedication to caregivers has not; our determination to move public policy to support caregivers has not; and our ability to be a public voice for caregivers has not.

“FCA now operates programs at national, state and local levels. If you are a caregiver, please be cheered by the great strides that we’ve made. But don’t sit back. There are new opportunities to advance programs for caregivers—we’ve seen first-hand what grassroots efforts can accomplish. State and federal legislators need to hear from you today. They need to understand the pressures and challenges of being a caregiver. Much remains to be done.

“I am grateful to our founders, to our Board, to our funders and to our staff for their stellar work. We appreciate the foresight of the California legislature for passing groundbreaking legislation when caregiving issues were largely unrecognized.

“We hope you will join us on our journey, and help support our efforts towards further progress. The need is growing, and finances are limited. Caregiver’ is a word that is now widely used, and public awareness of the issues has increased exponentially. Now’s the time to act!”

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