When people with dementia are released from hospitalization, they are sent home in the care of family members or friends who are given discharge instructions for medication regimens and therapy. Such home care instructions can be difficult for people with dementia, and for their caregivers who lack formal training in such practices.
Behavioral changes may occur during or following hospital stays, medication regimens can be intricate, conditions may limit mobility — those and other complications can be stressful and problematic for family caregivers who already are fatigued, face other obligations and perhaps have their own health problems.
Carolyn Jackson has been caring for her 64-year-old sister almost single-handedly in their Sacramento home for the past five years.
“You think you can do it,” says Jackson, who retired in 2012. “But the last few months have been rough.”
Jackson’s sister Bonnie has dementia and brain cancer which, after recent surgery, followed by radiation and chemotherapy, meant that Jackson had to shoulder even more responsibilities.
“Medications, feeding, getting her [Bonnie] dressed and moving around each day, plus trying to take care of myself,” adds Jackson. “It’s a lot.”
Hospital-to-home program helps caregivers
That’s what prompted a team of researchers in the Family Caregiving Institute at the Betty Irene Moore School of Nursing at UC Davis to conceive a support program to help caregivers with the hospital-to-community transition of family members who have dementia. A grant from Archstone Foundation of Long Beach, California, funds the project, which is under way in collaboration with UC Davis Medical Center. Archstone Foundation priorities include the development of innovative responses to the needs of caregivers for older family members.
Elena O. Siegel, an associate professor in the School of Nursing, carries out the project in collaboration with co-principal investigators, Heather M. Young and Ladson Hinton; co-investigator, Elizabeth Rice; and project manager, Nilpa Shah. She has expertise in implementation processes and in the steps required to apply evidence in practice.
“Our goal is to help caregivers navigate the changes they’re going to face,” Siegel says. “We are examining which elements of programs elsewhere have been found to be successful and collaborating with UC Davis Medical Center to develop a sustainable program – a program that fits with their work flows, their systems and their processes, and their goals, values and priorities.”
A complement to the CARE Act
Passage of the California Hospital and Family Caregiver Law, which is California’s implementation of federal Caregiver Advise, Record, Enable (CARE) Act legislation, complements this caregiver research project.
The CARE act requires hospitals to formally recognize family caregivers as members of the health care team and release important post-hospitalization care information to them.
“This project recognizes the vulnerability of an elderly patient with dementia, and the tremendous strain that it can place on the caregiver,” adds Greg Maynard, chief quality officer at UC Davis Medical Center, who is collaborating with Siegel on the project. “The caregiver is essentially the most effective barrier to institutionalization, emergency department visits and hospitalization for those patients.”
Meeting the needs of individual caregivers
Because some caregivers need more help than others, flexibility is a cornerstone of the project, which incorporates a gradated menu of resources scaled to the needs of individual caregivers. Family caregivers will be provided with the resources, tools, strategies to support them in their caregiving role.
Experts point out that the nature of dementia can be exhaustingly variable, where one can have a day in which their family member is happy, eating well and not waking up in the middle of the night.
“When you are caring for a family member with dementia or Alzheimer’s, there are bad days and good days,” says Oanh Meyer, assistant professor at UC Davis’ Alzheimer’s Disease Center. “The uncertainty about what kind of day your loved one is going to have causes anxiety and worry that is sometimes worse than actual caregiving duties.”
Dedicated to improving the health, well-being of family caregivers
Siegel says the overarching goal of this project is to improve the health and well-being of family caregivers. After completing the 12-month planning phase of the project in June 2019, she and the research team will seek funding for phase 2: implementing and evaluating the program at UC Davis Medical Center. Siegel expects to subsequently disseminate the findings to the health care community at large. The plans include development of a toolkit to support other health care systems with implementation of similar programs for family caregivers of people with dementia after hospitalization.
“The more we can support family caregivers the better off everyone will be,” notes Siegel. “From our hospital teams and the healthy outcomes they want for their patients, to the patients themselves and their family members who provide care at home, everyone benefits when we address the very real needs of family caregivers.”