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| Abbreviation | FCA |
|---|---|
| Registration no. | 94-2687079 |
| Legal status | 501(c)(3) |
| Purpose | To improve the quality of life for caregivers and the people who receive their care |
| Headquarters | San Francisco, California |
Executive Director | Kathleen A. Kelly |
| Website | caregiver.org |
Family Caregiver Alliance (FCA) is a national nonprofit caregiver support organization headquartered in San Francisco, California. FCA's purpose is to "improve the quality of life for caregivers and the people who receive their care." [1]
The Family Survival Project was founded in the 1970s by family members of relatives with brain disorders. In 1978, the project received a state grant to research how many adult-onset, brain-damaged people were impacted and the services available. The Family Survival Project became the Bay Area's Caregiver Resource Center, and was the predecessor of FCA. In 1980, the California legislature funded a pilot project to provide support for caregivers. FCA was awarded the pilot project, which it ran for three years. [2] The organization supported chronic brain disorders through education, support and assistance with planning. [3]
In 1984, the legislature passed a law establishing a statewide system of resource centers for caregivers, replicating a pilot project developed by FCA. [4] California created a system of Caregiver Resource Centers through the Comprehensive Act for Families and Caregivers of Brain-Impaired Adults, which operates under the state health department. [5] The state named FCA as a consultant through a contract with the state mental health department to oversee a system of Caregiver Resource Centers. [2]
In 2001, the National Center on Caregiving was established at FCA to advance the development of high-quality, cost-effective programs and policies nationwide that support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. [6]
"California was the first state in the nation to establish a statewide network of support organizations for caregivers; every resident has access to a CRC in their area". The California Department of Healthcare Services promotes the list of Caregiver Resource Centers on FCA's website. [7]
Today, FCA acts as a single point-of-entry for access to services and information for California's family caregivers, and as a clearinghouse for caregiver information throughout the US. FCA provides an online library of educational publications, webinars and videos for families needing practical help when care-giving. [8] The organization is recognized for providing guidance and resources for caregivers. [9] [10] [11] FCA also provides family consultants to advise caregivers and their families. [12]
The organization has a research arm, the National Center on Caregiving, which is also headed by Executive Director Kathleen Kelly. In 2016, Kelly was recognized with an "Influencer in Aging" award from Next Avenue, a nonprofit media website produced for PBS. [13]
FCA is cited in professional journals for its statements about caregivers. [14] A consumer health journal recommended the information provided by FCA as excellent "for caregivers new to the role, or seasoned caregivers seeking additional information", stating that FCA's website "can stand alone as a primary source for family care-giving information." [15]
For fiscal year ending June 30, 2018, FCA reported total revenue of $3,700,124, including $1,811,392 in government grants. The organization gave a total of $60,000 in grants to other organization for assistance with a program on Alzheimer's. [1]
AARP, formerly the American Association of Retired Persons, is an interest group in the United States focusing on issues affecting those over the age of fifty. The organization, which is headquartered in Washington, D.C., said it had more than 38 million members as of 2018. The magazine and bulletin it sends to its members are the two largest-circulation publications in the United States.
Elderly care, or simply eldercare, serves the needs of old adults. It encompasses assisted living, adult daycare, long-term care, nursing homes, hospice care, and home care.
Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.
Kinship care is a term used in the United States and Great Britain for the raising of children by grandparents, other extended family members, and unrelated adults with whom they have a close family-like relationship such as godparents and close family friends because biological parents are unable to do so for whatever reason. Legal custody of a child may or may not be involved, and the child may be related by blood, marriage, or adoption. This arrangement is also known as "kincare" or "relative care." Kinship placement may reduce the number of home placements children experience; allow children to maintain connections to communities, schools, and family members; and increase the likelihood of eventual reunification with birth parents. It is less costly to taxpayers than formal foster care and keeps many children out of the foster care system. "Grandfamily" is a recently coined term in the United States that refers to families engaged in kinship care.
Respite care is planned or emergency temporary care provided to caregivers of a child or adult.
A caregiver, carer or support worker is a paid or unpaid person who helps an individual with activities of daily living. Caregivers who are members of a care recipient's family or social network, and who may have no specific professional training, are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.
Bet Tzedek is an American non-profit human and poverty rights organization based in Los Angeles, California.
Carers' rights are rights of unpaid carers or caregivers to public recognition and assistance in preventing and alleviating problems arising from caring for relatives or friends with disabilities. The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work. With an increasingly ageing population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers/caregivers as well.
As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall costs and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.
Family caregivers are "relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services."
A professional live-in caregiver provides personal care and assistance to individuals, including those suffering from chronic illness, Alzheimer's disease, and dementia, within the home setting. Typical duties of a live-in caregiver include meal planning and preparation, assistance with grooming, dressing and toileting, medication management, laundry and light housekeeping, and transportation/escorts to doctor's appointments or social engagements. Professional live-in caregivers are often provided by an outside agency, which may also coordinate their services with the client's preferred in-home health agency and other medical providers.
Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the United States' Diagnostic and Statistical Manual of Mental Disorders, although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the ICD-11, does include the condition.
The Older Americans Act of 1965 was the first federal level initiative aimed at providing comprehensive services for older adults. It created the National Aging Network comprising the Administration on Aging on the federal level, State Units on Aging at the state level, and Area Agencies on Aging at the local level. The network provides funding—based primarily on the percentage of an area's population 60 and older—for nutrition and supportive home and community-based services, disease prevention/health promotion services, elder rights programs, the National Family Caregiver Support Program, and the Native American Caregiver Support Program.
Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE) is America's oldest and largest non-profit organization dedicated to improving the lives of lesbian, gay, bisexual, transgender and queer or questioning (LGBTQ+) older people, focusing on the issue of LGBTQ+ aging. According to its mission statement, "SAGE leads in addressing issues related to lesbian, gay, bisexual, transgender, queer and questioning aging. In partnership with its constituents and allies, SAGE works to achieve a high quality of life for LGBTQ+ older people, supports and advocates for their rights, fosters a greater understanding of aging in all communities, and promotes positive images of LGBTQ+ life in later years." SAGE is a 501(c)(3) organization that focuses on advocacy on the local and federal levels, as well as activities, groups, and programs that encourage LGBTQ+ older people to stay connected with each other and the community.
In the United States there are approximately 50 million people who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for would require permanent placement in institutions or health care facilities.
The LGBT Aging Project is a Boston-based non-profit organization dedicated to ensuring that lesbian, gay, bisexual, and transgender older adults have equal access to life-prolonging benefits, protection, services and institutions as heterosexual and cisgender adults. Founded in 2001, the project provides cultural competence and institutional capacity training to elder service providers on how to create and sustain LGBT welcoming environments, develop community-building programs for LGBT older adults and caregivers, and also works to enact policy and legislative changes to improve access to care and benefits for LGBT elders.. The LGBT Aging Project was featured in the 2010 award-winning documentary Gen Silent.
The Eldercare Workforce Alliance (EWA), a project of the Tides Center, is a coalition of 35 US national organizations that came together to focus on short- and long-term healthcare workforce issues relating to older adults. The Alliance helped pass the 2018 Raise Family Caregivers Act, supports ongoing funding for the Title VII Geriatrics Workforce Enhancement Program, and advocates for including elder care in government and professional policies, including related questions of educating and maintaining the labor force such care requires.
The Alzheimer's Foundation of America (AFA) is an American nonprofit organization based in New York City whose mission is to provide support, services and education to individuals, families and caregivers affected by Alzheimer's disease and related dementias nationwide, and fund research for better treatment and a cure. AFA unites more than 2,000 member organizations from coast-to-coast that are dedicated to meeting the educational, social, emotional and practical needs of individuals with Alzheimer's disease and related illnesses, and their caregivers and families. Member organizations include grassroots Alzheimer's agencies, senior centers, adult daycare center, home healthcare agencies, long-term care residences, research facilities, and other dementia-related groups. AFA holds Charity Navigator's highest rating of 4 stars.
Caregiving by country is the regional variation of caregiving practices as distinguished among countries.
Family Responsibilities Discrimination (FRD), also known as caregiver discrimination, is a form of employment discrimination toward workers who have caregiving responsibilities. Some examples of caregiver discrimination include changing an employee's schedule to conflict with their caregiving responsibilities, refusing to promote an employee, or refusing to hire an applicant.
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