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When Caregivers Need Care

Report cites urgency to help growing number of Americans tending to ailing loved ones

THURSDAY, March 16, 2006 (HealthDay News) -- An estimated 44 million Americans serve as unpaid caregivers for elderly or disabled family members.

And the number is growing, rather than decreasing, as policy veers sharply toward more home and community-based care, rather than institutionalization.

The one factor that gets lost in this equation, however, are the caregivers themselves. What needs do they have? How can they juggle at-home and at-work roles? How can they manage or prevent stress and accompanying health problems?

"Taking care of people with severe physical and cognitive disabilities can have very serious consequences for caregivers in terms of their own health, both physical and emotional," said Mary Jo Gibson, senior policy advisor at AARP's Public Policy Institute. "They often have a need for support groups and support services. They can be juggling multiple roles at home and at the workplace."

A new report from this Public Policy Institute details not only the needs, met and unmet, of these caregivers, but also examines model programs from eight different states that could be replicated to the benefit of the caregivers.

The report, Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support, was released Thursday.

"Family caregivers are the backbone of the long-term care system, and they need support," Gibson said. "We need to replicate those innovative family caregiving programs."

"Clearly, more and more families are providing care to people at home and are in tremendous need of additional support," added Cynthia Epstein, a family counselor and clinical researcher at Silberstein Aging & Dementia Research Center at New York University School of Medicine in New York City. "This report looks at the major issues, which are looking at the family caregiver as well as the patient as both in need of care."

Eight states -- Alabama, California, Georgia, Massachusetts, Minnesota, North Carolina, Pennsylvania and Washington -- have particularly innovative programs, the report found.

For instance, Caregiver Assessment programs identify family caregivers and their specific needs so they can then get needed support and prevent burnout.

"A frail elder without the family caregiver won't make it, but if you don't have a sense of who that family caregiver is you don't know what is needed," Epstein said. "Assessment is an intelligent step."

The assessments are then used to connect caregivers with services such as counseling, transportation, support groups and respite care -- somebody to give the caregiver a break.

Assessments feed into the next category of service, which are consumer-directed programs. Such programs give caregivers an element of choice and control over their decisions. Most states "offering consumer-directed options for caregivers include respite care (such as in-home care, adult day care, or weekend or overnight stays in a long-term care facility) and supplemental services (encompassing home modifications, yard work, chore services, and assistive devices)," the report said.

"The idea is that the family is in some way able to choose from a kind of menu of what would be helpful to them," Epstein said.

In addition to transportation, respite care and counseling, caregivers can also get help with home modifications, yard work, chore services and assistive devices such as wheelchairs.

Finally, collaborations with different health-care providers enable caregivers to be identified proactively in a doctor's office and then referred to specialty services to help them deal with the burden of caring for a loved one.

"This identifies the caregiver as a recipient of care and essentially as much of a patient as the frail elder," Epstein said. "That makes perfect sense. The physician doesn't have the resources, the connections. If there was a clear referral path, they would be willing to do it."

These are just glimpses of alternatives that might make the long-term care system work more smoothly as the population grows and ages. Ultimately, more change is going to be needed, the researchers said.

"We need broad, long-term care reform which would help both the care recipient and the caregiver," Gibson said. "The states have been putting the infrastructures in place, which will help in terms of caregiver support. They need to be replicated, and there need to be far more of them that reach more people, but what we wanted to highlight was that there are some models that can be built upon and are leading the way."

More information

For more information, visit the National Family Caregiver Support Program.

SOURCES: Mary Jo Gibson, senior policy advisor, AARP's Public Policy Institute, Washington, D.C.; Cynthia Epstein, LCSW, family counselor and clinical researcher, Silberstein Aging & Dementia Research Center, New York University School of Medicine; Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support, Public Policy Institute, March 16, 2006
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