Across the nation, millions of adults spend countless hours, sometimes around the clock, caring for loved ones with diseases or disabilities. They take parents, relatives, and others to and from appointments, oversee complicated medication schedules, perform routine health-care tasks, and help their loved ones manage basic activities like eating, bathing, and using the bathroom.
Most of these family caregivers do their work without pay, without formal education or training, and without supports to cope with the financial, physical, and psychological challenges of caregiving. As a result, caregivers are at high risk for developing health problems of their own.
Demands on caregivers are projected to grow in coming years as the health care landscape changes. The average length of hospital stays has been shrinking, pushing the delivery of care into homes and communities and onto family caregivers. In addition, the population is aging, and the number of people with dementia and multiple chronic conditions is rising. Most people want to stay in their homes as they age, and more family caregivers will be needed to provide more, and more complex, care.
Nurses have long played a key role in supporting family caregivers and are doing so even more as the health care system evolves. Nurses are providing more care for the sick and elderly in their homes and communities, which alleviates burdens on family caregivers. They are training caregivers to provide skilled care so their loved ones can live longer in their homes—and avoid expensive long-term care facilities. And they are teaching caregivers how to stay healthy and well.
Supporting family caregivers is a “major focus for nurses”—across the health care system and especially in the growing fields of palliative and hospice care, said J Taylor Harden, PhD, RN, FAAN, executive director of the National Hartford Centers of Gerontological Nursing Excellence and a member of the Robert Wood Johnson Foundation (RWJF) Executive Nurse Fellows program National Advisory Committee. Nurses are also taking on bigger roles in care coordination, care transitions, and health and wellness education and promotion, all of which support caregivers.
“Nurses are meeting people where they want to be,” agreed Amy Cotton, MSN, NP, FAAN, an RWJF Executive Nurse Fellow and past president of the National Gerontological Nursing Association. “They are identifying resources and supporting aging in place.”
More Nurses in Homes and Communities
Thankfully, health reform is making it possible for more nurses to provide more care in homes and communities, Cotton said. The Affordable Care Act (ACA) loosened federal limits on insurance coverage for in-home nursing care so that people with chronic conditions can qualify. The ACA is also supporting patient-centered medical homes and other innovations that allow nurses to do more to support caregivers, she added.
The rise of accountable care organizations, which provide coordinated care to Medicare recipients, has also enabled more nurses to provide care in homes and communities, Cotton said. And technological advances are allowing nurses to monitor vital signs and symptoms remotely. “We’re able to leverage technology in a way that we weren’t five years ago,” Cotton said. “That’s been a huge help for caregivers.”
The Alzheimer’s Association, the National Institute of Nursing Research, and other organizations offer programs to support caregivers, particularly those caring for loved ones with dementia. But much more support is needed, and nurse scientists like Ab Brody, PhD, RN, GNP-BC, are studying effective ways to provide it.
Brody, associate director of the Hartford Institute for Geriatric Nursing at the NYU College of Nursing and an RWJF Nurse Faculty Scholar, is exploring ways that home-health nurses and physical and occupational therapists can train caregivers to provide complex care for elderly patients with dementia.
The idea for his research came from his experience as a geriatric nurse practitioner, when he observed that nurses, rehab specialists, and family caregivers weren’t adequately trained to provide elder care. Brody recalls one home-care nurse who sought his advice about an elderly woman with dementia who had become agitated. The nurse wanted him to prescribe an anti-psychotic drug, which can be dangerous, but Brody determined that the patient was in pain from bedsores and treated her accordingly. Once treated, the woman returned to her normal state.
“The nurse did not know that acute changes in people with dementia are not usually caused by dementia; they’re usually caused by something else,” he said. “Caregivers often have no idea how to care for their loved ones.”
Many other nurse scientists are studying ways they and other health professionals can improve elder care and support caregivers—research that is critically needed as the nation changes. “Nurses are putting much more emphasis on preparing families for this changing health care system that we’re in,” Harden said.
New Jersey’s long-term care nurse residency program is educating nurses in geriatrics and gerontology, teaching them to provide high-quality eldercare, and meeting the state’s need to improve care for seniors. It is a model for the country.