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Who's Caring for the Caregivers?

AARP Reports Trends in Consumer-Directed Services for Family Caregivers

A growing number of older persons with disabilities are receiving care in home and community-based settings rather than in nursing homes, and family members continue to provide the vast majority of the care they receive.
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State programs confirm that providing support for family caregivers helps prevent or delay nursing home placement for loved ones with disabilities.

These family caregivers are often juggling multiple roles at home and in the labor force, or are experiencing other stresses and health problems, and need some help themselves. Yet, health care practitioners and social service providers don't routinely assess the unique health risks of family caregivers, even though the family caregiver's role is generally recognized as physically and emotionally difficult.

Increasingly, states are funding innovative programs to identify and support these caregivers, according to a recent report released by the AARP Public Policy Institute, Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support. The report draws attention to the needs of an estimated 44 million Americans who provide unpaid assistance and support to older people and adults with disabilities and to the new programs and services that have been created across the country to benefit these caregivers.

"This new AARP Public Policy Institute report found that the use of paid, formal care by older persons with disabilities in the community has been decreasing, while their sole reliance upon family caregivers has been increasing. Because there is a growing need, we wanted to identify promising practices to help caregivers. And we found them in eight states in particular: Alabama, California, Georgia, Massachusetts, Minnesota, North Carolina, Pennsylvania, and Washington," said AARP Director of Policy and Strategy John Rother.

"People want to stay in their homes, surround themselves with loved ones, and maintain a greater level of control over their care as they age," Rother said. "While this arrangement has benefits economically and helps with the shortage of long-term care workers, there is a growing recognition that the caregivers need a greater level of support to make the situation a success. Taking care of caregivers is simply smart public policy."

States Initiate Innovative Support Programs

To address this need, a growing number of states have initiated various caregiver support programs. California, for example, has a state-funded Caregiver Resource Center (CRC) system that offers consumer directed services for caregivers. Among the range of options, caregivers most frequently choose in-home respite, allowing them to receive a voucher to pay for agency services or to hire private help (such as another family member, friend, or neighbor) to care for their relative.

In Georgia, the state conducted an effectiveness evaluation of consumer-directed programs through the Gerontology Institute at Georgia State University. It found that consumer direction for caregivers provides a safety net for many individuals, especially low-income caregivers living in rural areas. Researchers reported that the financial, emotional and physical relief provided by the care enables families to extend the time that care in the home is possible, thus avoiding nursing home placement.

"The demand for in-home caregiving is going to increase. To help ensure the quality of care, policymakers and health providers need to factor in an important part this equation—family caregivers," said Rother.

The report also looks at a number of new initiatives filling the gap to assess the needs of family caregivers themselves and link with the health care system. "This is an important step forward," said Lynn Friss Feinberg, Deputy Director of the National Center on Caregiving at Family Caregiver Alliance and lead author of the report. "The health and support needs of family caregivers are often overlooked. The strain of caring for a family member, especially an older spouse, is becoming a public health issue," said Feinberg.

To read more about the new initiatives, click here to find the entire report. 

AARP is a nonprofit, nonpartisan membership organization that helps people 50-plus have independence, choice and control in ways that are beneficial and affordable to them and society as a whole. AARP Foundation is an affiliated charity that provides security, protection and empowerment to older persons in need with support from thousands of volunteers, donors, and sponsors.

Established in 1977, Family Caregiver Alliance is one of the largest and oldest organizations in the U.S. devoted solely to caregivers. Its pioneering programs—information, education, services, research and advocacy—support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions.

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Right at Home is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned, franchised providers of in-home care and assistance services.

  


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