At the Administration for Community Living (ACL), we recognize the sacrifices caregivers make so the people they love can age with dignity and remain in their homes and communities as long as possible. Caregivers juggle personal and home care, transport their loved ones to medical appointments, and often make tough financial decisions. They offer emotional support to family members and serve as a communication hub between medical practitioners. They do all this while balancing the competing demands of their own families, jobs, and personal lives. According to an AARP report (PDF), there are approximately 42 million family caregivers of adults with physical limitations in the United States. Together they provide the equivalent of $450 billion of care each year to older adults, people with disabilities, and those with severe illnesses. As the population of the U.S. continues to age, these numbers will only increase.
That is why ACL is committed to supporting a wide range of programs to develop and expand the caregiver support infrastructure across the nation. One of these programs, the National Family Caregiver Support Program (NFCSP), is the first federal program designed specifically to meet the needs of family caregivers. Since 2000, the NFCSP has provided more than one million caregivers with counseling, answers to questions, help accessing services, and respite care. In fact, the NFCSP has made over six million hours of respite care possible so that family caregivers can get the rest they need.
ACL is continually looking for ways to reach more caregivers through research and partnerships with other agencies and organizations. One such collaboration is the new Rehabilitation Research and Training Center on Family Support which will be operated by the University of Illinois at Chicago and the National Council on Aging. This program was funded by a five-year $4.3 million award from the National Institute on Disability, Independent Living, and Rehabilitation Research, which was formerly known as the National Institute on Disability and Rehabilitation Research and recently transitioned to ACL under the Innovation and Opportunity Act of 2014. The Rehabilitation Research and Training Center on Family Support will study the experience of caregiving through the lens of both aging and disability. This is the first initiative that seeks to translate research from these fields into evidence-based policies and practices to support caregivers.
Meanwhile, the role of caregivers continues to expand and evolve. Research shows caregivers are increasingly called upon to perform complex medical tasks, such as managing medicines, caring for wounds, and helping with assistive devices. Additionally, caregivers served by the NFCSP are increasingly helping their loved ones formally prepare advance care plans and medical directives by gathering vital records and information, researching community resources, and initiating sometimes-difficult discussions about long-term care preferences.
Advance care planning ensures that people are enabled to live their lives the way they want to, all the way through the end of life. Yet many caregivers say they feel unprepared for the role of advisor and planner. To address this issue, the Administration on Aging, a program division of ACL, is partnering with the Conversation Project to offer a webinar focusing on how the aging network can support caregivers in the advance care planning process. The 75-minute webinar, The Conversation Project: A Resource for the Aging Network and Family Caregivers, will take place on November 13, 2014, at 3 p.m. EST.
As President Obama noted in his National Family Caregiver’s Month proclamation: "Not only this month, but every month, let us work alongside our Nation's caregivers and make certain they are able to provide the best possible care for their loved ones for as long as necessary." ACL is proud of the work we are doing to support caregivers. And we continually seek opportunities to do more.
ACL Programs to Support Caregivers
The Administration for Community Living supports a range of initiatives designed to assist family caregivers across the lifespan. To learn more about these programs, please click on the following links:
Alzheimer’s Disease Supportive Services Program (ADSSP)
Since 2008, 76 grants have enabled 33 states, the District of Columbia, and Puerto Rico to implement evidence-based interventions that support the unique and rapidly changing needs of family caregivers of people with Alzheimer’s disease and related disorders.
Alzheimer’s Disease Initiative—Specialized Supportive Services (ADI-SSS)
In 2014, ACL funded ten organizations to develop and deliver specialized ADRD services in three target areas. Focus areas will include improving dementia-related services to people who live alone, and individuals aging with intellectual and developmental disabilities and at risk of developing ADRD. An additional component will focus on training family caregivers in behavioral symptom management.
Alzheimers.gov connects caregivers to information and resources about Alzheimer’s disease and related dementias.
Community of Practice: Focusing on Life Span Supports for Self-Advocates and Their Families
This Community of Practice is working with six states to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities.
The Eldercare Locator connects older adults and their caregivers to state and local resources through a national toll-free call center and website.
Lifespan Respite Care Program
Since 2009, the Lifespan Respite Care Program has funded 32 states and the District of Columbia to work with a broad range of stakeholders to improve access to, and the availability of, respite services for family caregivers of children or adults with special needs.
National Alzheimer’s Call Center
The Call Center provides 24/7 information and counseling on Alzheimer’s disease and related dementias for individuals, family members, and informal caregivers through professional customer service staff and master’s degree social workers in 170+ languages.
National Family Caregiver Support Services Program (NFCSP)
The NFCSP provides grants to states to make a range of support services available to family and informal caregivers, including counseling, respite care, and training. These resources help family and informal caregivers to care for their loved ones at home for as long as possible.
Native American Caregiver Support Services Program (NACSSP)
The NACSSP provides services to Native American caregivers, including information and outreach, access assistance, individual counseling, support groups and training, respite care and other supplemental services.