Clinicians are ethically obligated to care for family caregivers of dementia patients, as well as offer helpful resources, according to an article published in December by the AMA Journal of Ethics online.
“We suggest that, in dementia care, attention to family caregivers should be mandatory as their health and well-being are a critical part of the context of providing care to a patient with dementia,” the authors wrote in the article.
The authors are Laura N. Gitlin, PhD, a professor at the Johns Hopkins University School of Nursing and School of Medicine in Baltimore, and Nancy A. Hodgson, PhD, RN, FAAN, an associate professor and the Anthony Buividas endowed term chairwoman in gerontology at the University of Pennsylvania School of Nursing in Philadelphia.
More than 15 million people including family members care for persons living with dementia in the U.S., according to a University of Pennsylvania news release. “Yet the current healthcare environment and reimbursement models emphasize obligations toward individual patients, preventing clinicians from reaching out to these caregivers to assess their needs and provide care,” the release stated.
In the article, the authors wrote that most persons with dementia are cared for in their homes, and “that tasks associated with caregiving increase in number and complexity with disease progression.” These tasks include help with bathing, dressing, feeding, moving and managing medications.
“The caregiver must also ensure the patient’s safety, well-being, and quality of life; coordinate care and care transitions; negotiate unwieldy and disjointed health and human service systems; accompany the patient to doctor visits; and advocate, protect, support, and comfort the person with dementia, particularly in healthcare encounters,” they wrote, adding none of these tasks include other family and work responsibilities. “These care tasks accumulate with disease progression and result in significant and well-documented physical, emotional, and financial consequences for families.”
“From a family-centered care perspective, asking about how a patient’s caregiver is doing and about his or her needs during a clinical encounter is the only ethical and moral stance that a clinician can assume,” they wrote.” Clinicians can also offer referrals to the caregivers where they can get help and advocate for public health policies that include caring for the caregiver, they wrote.