Insights from Rush: Improving the Health and Well-Being of Family Caregivers
This blog is from Ellen Carbonell, LCSW, program manager and clinical lead in Rush University Medical Center’s Department of Social Work and Community Health. In it, she shares information about a program at Rush that helps family caregivers live healthy and meaningful lives while providing care for older adults. This was published on InsideRush on November 20, 2020.
As we recognize National Family Caregiver Month this November, the Department of Social Work and Community Health is spearheading an innovative, interprofessional intervention for family caregivers of adults 65 and older at Rush. It's called the Rush Caregiver Health and Well-Being Initiative, and results are showing a decrease in levels of depression and anxiety symptoms, a reduction in caregiver stress and an increased sense of comfort with providing care effectively.
The U.S. population of older adults is increasing, and so are the numbers of individuals providing increasingly complex medical care for them. This care is typically provided without medical training, which contributes to the already high stress levels of family caregivers. As a result of this added stress, caregivers are at significantly higher risk for negative physical and mental health consequences.
The purpose behind the initiative
As care needs increase in older adults, caregiver self-care tends to fall away, which is what the Rush Caregiver Health and Well-Being Initiative is designed to address. The goal of the program is twofold:
To improve ways that the health care system views and works with family caregivers
To provide skill training, support, resources and interventions that help family caregivers live manageable and fulfilling lives
To begin the initiative, Epic staff got engaged to allow family caregivers to be entered into the electronic health record, in compliance with the Caregiver Advise, Record, Enable (CARE) Act, which outlines how family caregivers can get support as a member of the care team and receive training on how to provide care after an inpatient stay.
Once that was established, the caregiver initiative staff began providing the following:
The Teach-Back Clinic, which engages providers to teach caregiving skills and provides self-care assessments and education
Family care planning meetings, which give caregivers and care recipients a chance to develop plans to help both live fully and meaningfully
Goals of care meetings, where caregivers can learn to work with care team members most effectively, accompanied by meetings with the entire care team, including staff at Rush and elsewhere, to coordinate care
Social Work and Community Health services, including psychotherapy, Rush Generations programs and referrals to needed services
How the initiative delivers impact
One recent participant in the caregiver initiative was Rush patient Barbara and her spouse, Jim (these names have been changed for privacy). Jim was caring for Barbara, who was living with Parkinson's disease and mental health concerns.
In a recent visit to her neurologist, Jim was identified as Barbara's caregiver, and his contact information was entered into Epic. The couple had family and friends in the area, but Jim's anxiety about leaving his wife alone caused him to pull away from activities he enjoyed. The neurologist saw that Jim was struggling with providing care, and made a referral for the couple to the caregiver initiative.
Following a thorough assessment of Jim's needs with the social worker, both he and Barbara became engaged in family care planning meetings, which allowed Jim to better understand Barbara's mental health issues and to recognize the need to ask for help from others. Jim later described how identifying his supports and understanding how to engage with them led to an ability to include others in the care team.
The caregiver initiative social worker had four meetings with the couple regarding their understanding of their situation, how to plan for current and future care needs, expanding their care team and how to support each other in living their lives with what matters to them as a priority. Jim was able to identify and engage some home health services to assist them.
Jim experienced a significant reduction in assessed levels of caregiver stress and burden, and reduced scores on depression and anxiety screeners, which he attributed to participating in the caregiver initiative.
As Barbara's care needs and Jim's need for increased social involvement were explored, the couple expanded the care team to include respite provided by family and friends, as well as in-home care services. As a result, Barbara noticed a sense of relief in Jim, which she felt was having a positive impact on their relationship.
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To learn more about Rush’s Caregiver Initiative, view our recent Social Work Grand Rounds webinar (slides here, recording here) or contact us directly with any questions or interest in replicating this initiative in your own community.