(BlackDoctor.org) — A new study shows that at-home care for stroke patients falls to family members about 75 percent of the time — even when care was being administered by a health-care professional.
Many family caregivers aren’t prepared for the challenges the job presents, the researchers added.
They studied 99 caregivers in New York City who were tending to family members who suffered a stroke or other brain injury. Caregivers were studied both while they were receiving help from a certified home health agency and after the agency’s services were ended.
This study showed that “even while services are in place, family caregivers provide the vast majority of care,” Carol Levine, study author and director of the Families and Health Care Project at the United Hospital Fund, said in a prepared statement.
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When the home health agency’s services end — usually because Medicare will not pay for long-term care that does not involve certified nursing or therapy — most family-member caregivers are not prepared for their duties.
“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,” said Levine.
Results of the study showed that many of the caregivers said they experienced feelings of anxiety, isolation and depression, which could affect their ability to care for their sick family member.
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The study is published in the latest issue of the Milbank Quarterly.
Part of the problem may be the communication between the home health agency and the family caregiver. Most of the agency’s materials — pamphlets and brochures about an illness — are intended for the patient, not the caregiver.
“We really have to reframe our whole long-term care system to assess the needs of family caregivers as well as the patient,” said Lynn Friss Feinberg, deputy director of the National Center on Caregiving and the Family Caregiver Alliance in San Francisco.
With an estimated value of $6.1 billion worth of care given by family members last year, family-member caregivers are taking on a big burden. “If we all disappeared, the health-care system costs would skyrocket,” Feinberg said.
Levine recommended that health-care professionals dedicate resources to preparing family caregivers for their responsibilities and how to best deal with the patient when agency services run out. They should also help family members understand the health-care system and what services are available to them, as well as what costs and coverage are involved.
More information
The American Stroke Foundation has more information on stroke rehabilitation.
