Family Caregivers of Stroke Patients Get Little Information, Support

Stroke and brain injury patients living at home receive the bulk of their care from family members, but these caregivers get little preparation, information or support from health care professionals and home health agencies, according to a new study.

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 caregivers 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 caregiver 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 care givers 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.