Informal Caregivers
According to the most recent National Long Term Care Survey (1994), more than 7 million people are informal caregivers providing unpaid help to older persons who live in the community and have at least one limitation in their activities of daily living. These caregivers include spouses, adult children, and other relatives and friends.
Of the older persons receiving paid and unpaid assistance, 95 percent have family and friends involved in their care. Paid home care is the exception, not the rule, for the great majority of older persons with disabilities.
The degree of caregiver involvement has remained fairly constant for more than a decade, bearing witness to the remarkable resilience of the American family in taking care of its older people. This is despite increased geographic separation, greater numbers of women in the workforce and other changes in family life. Thus, family caregiving has been a blessing in many respects. It has been a budget-saver to governments faced annually with the challenge of covering the health and long-term-care expenses of people who are ill and have chronic disabilities. If the work of caregivers had to be replaced by paid home-care staff, the estimated cost would be $45 billion to $95 billion per year.
Recognition of Caregivers
National recognition is beginning to be paid to the critical role of families in the provision of long-term care. In 1993, President Clinton signed the Family and Medical Leave Act into law to ensure that businesses address the needs of their employees with regard to eldercare. In addition, every November, President Clinton issued a formal proclamation designating the week of Thanksgiving as National Family Caregivers Week, a period set aside for the nation to honor and support the daily contributions of family caregivers.
The president's fiscal year 2001 budget requests $125 million in caregiver support to be funded under Title III-B of the Older Americans Act. The services these funds would support will include respite, adult day care, in-home assistance and other caregiver support services identified as needs by States and Area Agencies on Aging, as authorized by Title III-D of the Act.
What Caregivers Say
Conversations with caregivers across the country have identified the following services as critical components of a caregiver support system:
- provision of information to caregivers about available services
- assistance to families in gaining access to such services
- individual counseling, organization of support groups, and provision of caregiver training to help families make decisions and solve problems relating to their caregiving roles
- respite care to enable families and other informal caregivers to be temporarily relieved from their caregiving responsibilities
- provision of supplemental long term care services, on a limited basis, to complement the care provided by caregivers and other informal caregivers
The National Aging Network
Under the authority of the Older Americans Act, the U.S. Administration on Aging works closely with the national network of aging organizations to plan, coordinate and provide home and community-based services to meet the unique needs of older people and their caregivers. The aging network includes AoA'
s regional offices; 57 State Units on Aging, 655 Area Agencies on Aging (AAA), 225 tribal and native organizations representing 300 American Indian and Alaska Native Tribal organizations and two organizations serving Native Hawaiians, plus thousands of service providers, adult care centers, caregivers, and volunteers.
The local AAA is one of the first resources a caregiver should contact when help is needed. Almost every state has one or more AAA, which serves local communities, older residents and their families. (In a few states, the State Unit or Office on Aging serves as the AAA.) Local AAAs are generally listed in the city or county government sections of the telephone directory under "Aging" or "Social Services."
AoA supports a nationwide, toll-free information and assistance directory called the Eldercare Locator, which can locate the appropriate AAA to help an individual needing assistance for their loved ones, relatives or friends. Older persons and caregivers can call the Eldercare Locator (800) 677-1116, Monday through Friday, 9 a.m. to 8 p.m., Eastern time.
The Administration on Aging is an agency of the U.S. Department of Health and Human Services.
