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Eldercare News
Family Caregivers of Stroke Patients Get Little Information, Support
By Valerie DeBenedette, Contributing Writer
Health Behavior News Service
June 6, 2006 - Stroke and brain injury patients living at home receive the bulk of
their care from family members, but these volunteer caregivers get
little preparation, information or support from health care
professionals and home health agencies, according to a new study.
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Home services are often terminated with little warning, leaving families
on their own to care for patients with limited mobility, speech problems
or both, the study in the latest issue of the Milbank Quarterly
also revealed.
Researchers interviewed 99 family care givers of stroke and brain injury
patients in New York City while they received care from a certified home
health agency and after these services were stopped. Even during the
time when formal care was being given, patients received three-quarters
of their care from family members.
This shows that, even while services are in place, family caregivers
provide the vast majority of care, said Carol Levine, director of the
Families and Health Care Project at the United Hospital Fund and lead
author of the study.
The estimated annual value of family-provided care for U.S. stroke
patients was $6.1 billion in 2004, according to study background
information. This is the dirty little secret. If we all disappeared,
the health care system costs would skyrocket, said Lynn Friss Feinberg,
deputy director of the National Center on Caregiving and the Family
Caregiver Alliance in San Francisco. We have all the responsibility and
no rights.
Medicare will pay for skilled nursing and physical therapy for a period
of time after hospital discharge if these services are provided by a
certified home health agency (CHHA). Medicare will not cover long-term
custodial care, which is any care that does not involve skilled nursing
or therapy.
Private insurance may also reimburse for CHHA service, although the
level and duration of service varies. But many stroke and brain injury
patients need long-term care. CHHAs terminate care when reimbursement
runs out if the patient is not eligible for programs such as Medicaid.
Family members are not prepared for the transition when formal home care
agency services end, Levine said. They are doing most of the work but
are not really ready to take on all of the care themselves, and
certainly do not get enough advice on where to get assistance. Often,
she said, family caregivers are not kept informed by healthcare
agencies, which are geared to dealing with the patient only. Agency
pamphlets and brochures may be unintentionally misleading about how long
formal home health care will be provided, she added.
Caregivers in the study reported feeling significantly isolated, anxious
and depressed. If the family care giver gets sick because of their
workload, it does no good for the original patient, Feinberg said. We
really have to reframe our whole long-term care system to assess the
needs of family caregivers as well as the patient.
The study made several recommendations for improving communication.
Health care providers must spend more time educating family caregivers
so that they can understand the system and obtain whatever services are
available, Levine said. Caregiver education should also include training
on how to deal with patient needs. Social workers, who are trained both
to help educate and arrange for services, are underutilized, said both
Feinberg and Levine.
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