Millions of family caregivers around the United States provide complex medical care to older adults to help support them at home, often without comprehensive training to deliver this care. This lack of training can lead to physical, emotional, and financial strain on the caregiver and poor outcomes for the care recipient.

Federal and state legislation to support family caregivers, such as the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act and the Caregiver Advise, Record, Enable (CARE) Act, has created new opportunities to address these issues. The CARE Act, which has been passed in 40 states and three U.S. territories, requires hospitals to identify family caregivers, record their name in the electronic health record (EHR), inform them of upcoming discharge of their family members, and offer them instruction about the complex medical or nursing tasks they will do at home.

In January 2019, Rush University Medical Center in Chicago leveraged the CARE Act and received funding from the RRF Foundation for Aging to develop its Rush Caregiver Intervention with the goal of both improving care for older adults and addressing the needs of caregivers. With support from The John A. Hartford Foundation, Rush is partnering with the Institute for Healthcare Improvement (IHI) to integrate Rush’s Caregiver Intervention into IHI’s 4Ms framework of Age-Friendly Health Systems (What Matters, Medication, Mentation, and Mobility).

Intervention

Rush’s resulting 4Ms Caregiver Intervention, established in January 2020, focuses on both system-level change and direct caregiver interventions. System-level change efforts include improving procedures, EHRs, workflows, training, and evaluation to better meet the needs of older adults and their caregivers.

Direct caregiver interventions include needs assessments of the caregiver, skill-building meetings to help build confidence and safety with care provision, family sessions to coordinate what matters to the patient and the caregiver, and care team planning meetings. The caregiver needs assessment measures depression, anxiety, self-efficacy, burden, health literacy, social determinants of health, and biopsychosocial/spiritual status.

In the skill-building meetings, the caregivers engage with different care team members to improve their self-efficacy in providing care and ensure the safety of the older adult and the caregiver. For example, the caregiver may learn about medication effects and interactions with a pharmacist, tube feeding, wound cleaning, and changing a catheter with a nurse, or learning effective communication strategies with a social worker. Other care team members include physical therapists, occupational therapists, and nutritionists. The “what matters” sessions helps to identify what both the caregiver and care recipient want to accomplish. The caregiver then meets with the care team to clarify goals, caregiver needs, and coordinate person-centered care.

Implementation

The program accepts referrals from all providers as well as self-referrals from caregivers. Often, the older adult is a patient at Rush and the caregiver receives medical care elsewhere. Rush strives to assess and act on the 4Ms with all older adult patients, including asking if they have a caregiver. Once a caregiver is identified and documented in the care recipient’s EHR, the caregiver also becomes a patient at Rush with their own EHR to provide them with the caregiver intervention services. Caregivers go through patient registration for insurance check as they would for other services. If a caregiver is uninsured, they can participate in the social work-led components, as there are trained and supervised social work interns that provide these services.

Though the program started out grant funded, there is a billing structure as of December 2021, which provides longer-term sustainability. The CPT codes are utilized by the respective specialists for billing the various components of the program. Social workers bill for services through the caregiver's insurance.

Impact

Nearly 150 families are served each year by the Rush Caregiver Intervention, and the model is now being piloted at six other health systems as of January 2022. This model may be adapted for federally qualified health centers and other settings beyond hospitals.  

Early outcomes of the model through an internal analysis conducted by Rush show statistically significant reductions in symptoms of depression, anxiety, and caregiver burden. In addition, inpatient admissions, length of stay, and emergency department visits of care recipients decreased. Program leaders expect to publish results within the next year.

Many patients and their caregivers have benefited from Rush’s enhanced caregiver support program. For example, Alberto and his wife Nancy, who has advanced Parkinson’s Disease, attended care planning meetings together in 2019. Nancy has impaired speech, uses a wheelchair most of the time, and is at risk of falling. Alberto supports Nancy with activities of daily living and acknowledges his challenges to her when the responsibilities feel overwhelming. Nancy wanted her husband to get more support and expressed guilt because of the level of care that she needs from him. Alberto was concerned about the irritability and impatience he experiences at times with his wife but was apprehensive about the idea of talking to a psychotherapist about the challenges he faces. Care planning meetings were helpful for Alberto and Nancy to discuss their concerns and manage them together. After the second session, when the social worker discussed tapping into support systems, Alberto was excited to share that he asked his niece to care for Nancy while he went to play golf and also reported that a friend helped with cooking meals. Alberto was surprised that asking for help was easy and that people were willing to offer their time. Nancy was pleased to see that Alberto was able to relax. A year after enrolling in the program, Alberto stated that he was in therapy because he realized the importance of talking to someone. He still utilizes the tools from the care planning meetings, and reports that identifying his support team has been valuable in sustaining his role as a caregiver.

Insights

The Rush team shared the importance of creating strategies to support system-level culture change on the inclusion of family caregivers. Intentionally integrating caregivers into all processes and workflows has improved communication between patients, their care teams, and caregivers. Another key lesson is developing the value proposition to health system leaders to support caregivers. It can be difficult to quantify the direct value of caring for the caregiver, but quantitative data and real-world stories help to make the case.

Acknowledgements

Thank you to Diane Mariani, LCSW, CADC, Program Coordinator, Social Work and Community Health, Robyn Golden, LCSW, Associate Vice President of Social Work and Community Health, and Ellen Carbonell, Program Manager and Clinical Lead, Social Work and Community Health, Rush University Medical Center, for helping to inform this profile.