The journal of the Catholic Health Association of the United States (CHA), Health Progress, has published an article, "Aging - 'Caring for Caregivers' Model Addresses Needs of Those Looking After Others," as part of its spring 2023 issue.Family caregivers in the U.S. take on around 24 hours of complex care per week. Yet, nationally, caregiver needs are severely under addressed, leading to serious health consequences for millions of caregivers. This article explains the Caring for Caregivers Model at RUSH University Medical Center, which aims to address these needs by providing skilled and emotional support for caregivers through teams of physical therapists, occupational therapists, nurses, dieticians, pharmacists, and social workers.With support from RRF Foundation for Aging, The John A. Hartford Foundation, the model is expanding as part of the Age-Friendly Health Systems movement, of which the Catholic Health Association is a founding partner

Ellen L. Carbonell

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A G I N Gmagine being offered a job that will require you to be on call 24/7 every day of the year, with no time off for holidays or illness. You will probably need to cut back on hours at your current job or leave it to take on this new role, which means financial worries, including reduced retirement assets in your future. The new job has no salary attached. In fact, you will be responsible for paying for some aspects yourself. The work is stressful, your physical and mental health may suffer, and you may even be more prone than others to de-veloping serious chronic health conditions as a result. The job can be fulfilling in many ways, but you naturally have reservations. However, because there may be no one else to take this role on, you feel you have no choice but to accept it. Welcome to the world of the family caregiver.‘CARING FOR CAREGIVERS’  MODEL ADDRESSES NEEDS OF THOSE LOOKING AFTER OTHERSIBecause the United States lacks a compre-hensive plan for long-term care for older adults, family caregivers continue to be the assumptive long-term care providers for the nation’s aging population. Although many family caregivers find meaning in this role and take it on willingly, they often experience re-lated physical, emotional and/or financial costs. However, thanks to a new initiative started by Rush University Medical Center in Chicago, resources are now becoming available to patients and their caregiv-ers to help improve their well-being.LANDSCAPE OF THE FAMILY CAREGIVERFamily caregivers in the U.S. are providing ap-proximately 24 hours of complex care per week, with 58% engaging in medical and nursing tasks.1 Seven out of 10 of these caregivers also experience the practical and emotional burden of managing pain for the person they are looking after.2 This care is provided to the best of the caregivers’ abili-ties, but few have received ongoing training and support from medical professionals. Less than a third (29%) of family caregivers say that a mem-ber of the care recipient’s health care team has asked them about the support they need to pro-vide care, and only 13% say a health care provider asked what they needed to care for themselves.3 This clearly demonstrates the need for more to be done to provide assistance to meet those needs.Clinically significant signs of depressive disor-ders are present in 40%-70% of family caregivers of older adults, with a quarter to a half of them meeting the criteria for major depression.4 Care-givers are frequently strapped for time and ener-gy, so neglect their own care needs, and 40% re-port experiencing two or more chronic diseases.5 These issues are affecting millions of caregivers throughout the U.S., resulting in serious conse-quences for them as well as the older adults for whom they provide care.Clinically significant signs of depressive disorders are present in 40%-70% of family caregivers of older adults, with about a quarter to a half of them meeting the criteria for major depression.ELLEN L. CARBONELL, MSW, LCSW60 SPRING 2023             www.chausa.org             HEALTH PROGRESS Despite these dramatic findings and the cru-cial role of caregivers in providing long-term care, health care providers have typically not attended to these needs. Health systems are uniquely po-sitioned to address their needs, given the care recipient’s reliance on caregivers for help with making and keeping appointments. Because of this accessibility and thanks to funding from RRF Foundation for Aging, Rush University Medical Center embarked on an effort in 2019 designed to have a two-pronged effect: to change the ways the health system identifies and addresses the needs of family caregivers of older adults, and to provide education and support them to improve their and their care recipients’ well-being.ADDRESSING CAREGIVER NEEDS WITHIN HEALTH SYSTEMSIntervention begins with identification. The CARE Act, enacted in 44 states and territories, stipulates that caregivers of older adults need to be identified and entered into the medical record upon admission to the hospital.6 Rush University Medical Center has expanded this expectation and has established it as a best practice in both its inpatient and outpatient set-tings. Although most medical record systems do not make it easy to enter this information, Rush has created a work-around to allow this change, explicitly listing the relationship and care pro-vision role with the recipient, and for it to ap-pear on the storyboard in the older adult’s medi-cal record so it can be easily viewed by anyone opening their chart. In addition, multiple care-givers who handle different tasks can be noted, with those tasks delineated in the record. The entry may be made or edited by anyone with appropriate access to the record.Rush also actively encourages providers to view the caregiver and the care recipient as a dyad to be included in discussions about care planning and provision. Caregivers have his-torically not been included in these discussions, which has led to misunderstandings about what will be done and how. Age-Friendly Health Sys-tems support the use of four evidence-based ele-ments of care for all older adults, known as the “4Ms” (What Matters, Medication, Mentation and Mobility) including a focus on what matters to both the older adult and the caregiver as key components. Rush’s approach adds what matters to the caregiver as a key component of addressing the needs of the dyad.LISTENING AND PLANNING TO PROVIDE SUPPORTThe “Caring for Caregivers” model begins with a referral to the program by anyone inside or out-side of the health system, and caregivers may also self-refer to take part. An appointment is set up for the caregiver to meet with a social worker or other mental health professional to get acquainted and to assess caregiver needs with a set of evidence-based tools. By the end of this meeting, a custom-ized intervention plan is established together.If the caregiver is experiencing physical diffi-culties or a lack of confidence related to care tasks, skill-building meetings with physical therapists, occupational therapists, nurses, dieticians, phar-macists or social workers are available to assess concerns and address identified needs. Planning meetings may also be initiated to include the care-giver and the care recipient in working with the health care team on current and future care plans.In addition, up to five sessions may be held with family-therapy trained mental health profes-sionals — referred to as “Planning for What Mat-ters” sessions — to assist the care recipient and/or the caregiver alone with expanding the care team, communicating effectively with each other and the health care team, exploring what is val-ued most by both parties and mapping out ways to support each other currently and in the future. Care plans for what is needed now and for what will be anticipated with disease progression are included, and extended family and friends who can support the dyad may be brought in to discuss their participation in the plan as well.OUTCOMESProgram engagement begins with the mental health professional and the caregiver complet-ing a set of evidence-based tools, including the shortened version of the Burden Scale for Family Caregivers7; the Patient Health Questionnaire-9 to assess depression8; and the General Anxiety Disorder-7 to assess anxiety.9 Once the caregiver has completed the recommended interventions, follow-up assessments occur at one, three and six months post-intervention. Initial results using paired sample t-tests [a statistical test that is used to compare the means of two groups] indicate sta-tistically significant reductions in all three mea-sures at one and three months, and significant re-ductions in self-reporting of burden at six months. (See Figure 1 on page 62.)Additionally, outcomes have been explored to see if caregivers’ participation in the program is HEALTH PROGRESS             www.chausa.org             SPRING 2023 61associated with changes for care recipients in the number of hospital admissions, length of hospi-tal stays and emergency department visits when comparing these six months prior to and six months after caregiver participation using paired sample t-tests. When looking only at changes in Rush care recipients’ hospital use, preliminary results indicate statistically significant reduc-tions in all three measures with more clinically significant changes seen when the pool is limited to care recipients who had any inpatient or emer-gency department visits (see Figure 2 on page 63). These types of findings are of particular interest to health system administrators due to associated financial penalties for instances of high rates.EXPANDING THE CARING FOR CAREGIVERS MODELBeginning in 2020, thanks to a grant from The John A. Hartford Foundation, Rush University Medi-cal Center began working with the Institute for Healthcare Improvement to prepare expansion of the Caring for Caregivers model throughout the country as part of the Age-Friendly Health System movement, an initiative started by the foundation and the Institute for Healthcare Improvement in partnership with the American Hospital Asso-ciation and CHA. Six pilot sites began testing the model within their health systems to determine the facilitators and barriers to implementation, and the data collected is being explored to make needed updates to the model and related materi-als.A three-year continuation grant from The John A. Hartford Foundation — which began in October 2022 — is allowing this work to move forward. The importance of including caregivers in age-friendly care is being promoted by the In-stitute for Healthcare Improvement through their marketing and communication efforts, and ways to include caregivers in the care provision of older adults is being discussed in their Action Commu-nities, which include individuals from participat-ing Age-Friendly Health Systems and offer infor-mation and facilitate discussion among members.Rush University Medical Center will offer op-portunities for health systems to establish Caring for Caregiver model programs at their sites and will assist with tailoring the model’s interventions to the needs of interested systems and their pa-tient/caregiver populations. Presentations at con-ferences, workshops and trainings, learning com-munities offering information and peer support, and meetings with individual health systems will be held to help health care systems learn about the Figure 1: Caregiver Outcomes    Three Months After Intervention2520151050 Caregiver  Burden(n=17)Depression(n=18)Anxiety(n=18)Initial Follow Up20.4114.718.72 9.286.505.67p=<.01One Month After Intervention2520151050 Caregiver  Burden(n=66)Depression(n=65)Anxiety(n=63)Initial Follow Up19.0914.398.05 8.865.324.08p=<.01Six Months After Intervention2520151050 Caregiver  Burden(n=21)Depression(n=22)Anxiety(n=22)Initial Follow Up20.3315.678.73 8.957.687.27p=<.01Source: Rush University Medical Center n = sample sizep<.01 = high level of confidence that finding was not by chance62 SPRING 2023             www.chausa.org             HEALTH PROGRESS Measured results indicate a reduction in caregiver burden, depression and anxiety among those initially assessed who took part in the Caring for Caregivers program.model, assess for readiness to integrate the model into existing programs and services, garner active support from leadership, promote the program and gather and assess outcomes to adjust the in-tervention as needed.The Caring for Caregivers model is being offered to sites free of charge nationwide, and recruitment for the program has begun. For more information and implementation at your site, please contact Diane Mariani, Program Manager, at Diane_Mariani@rush.edu.ELLEN L. CARBONELL is an assistant professor for the Department of Social Work in the College of Health Sciences at Rush University in Chicago. She is also a social work consultant for caregiver programs in the Department of Social Work and Community Health at Rush University Medical Center.NOTES1. “2020 Report: Caregiving in the U.S.,” AARP and National Alliance for Caregiving, May 2020,  https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.2. Susan C. Reinhard et al., “Home Alone Revisited:  Family Caregivers Providing Complex Care,” Home Alone Alliance, April 2019, https://www.aarp.org/content/dam/aarp/ppi/2019/04/home-alone-revisited-family-caregivers-providing-complex-care.pdf.3. “Caregiving in the U.S.,” AARP and National Alliance for Caregiving.4. “Caregiver Statistics: Health, Technology, and Care-giving Resources,” Family Caregiver Alliance, https://www.caregiver.org/resource/caregiver-statistics-health-technology-and-caregiving-resources/.5. “Caregiving for Family and Friends — A Public Health Issue,” Centers for Disease Control and Prevention, 2018, https://www.cdc.gov/aging/agingdata/docs/ caregiver-brief-508.pdf.6. “Supporting Family Caregivers Providing Complex Care,” AARP, https://www.aarp.org/ppi/initiatives/supporting-family-caregivers-providing-complex-care/.7. Elmar Graessel et al., “Subjective Caregiver Burden: Validity of the 10-Item Short Version of the Burden Scale for Family Caregivers BSFC-s,” BMC Geriatrics 14,  no. 23 (February 2014): 1471-2318, https:// doi.org/10.1186/1471-2318-14-23.8. Kurt Kroenke and Robert Spitzer, “The PHQ-9: A New Depression Diagnostic and Severity Measure,”  Psychiatric Annals 32, no. 9 (September 2002): 509-515, https://doi.org/10.3928/0048-5713-20020901-06.9. Robert Spitzer et al., “A Brief Measure for Assessing Generalized Anxiety Disorder: The GAD-7,” Archives of Internal Medicine 166, no. 10 (May 2006): 1092-1097, https://doi.org/10.1001/archinte.166.10.1092. Figure 2: Care Recipient OutcomesSource: Rush University Medical Center All Care Recipients4.003.503.002.501.002.000.501.500.00Days Inpatient Stays Inpatient ED Visits6 Months Pre-Intervention 6 Months Post-Intervention6 Months Pre-Intervention 6 Months Post-Intervention3.560.63 0.711.310.29 0.39(n=313)   p=<.001Care Recipients With Any Inpatient  or ED Care Pre-Intervention7.006.005.004.001.003.000.002.00Days Inpatient Stays Inpatient ED Visits6.611.16 1.312.430.54 0.72(n=169)   p=<.001n = sample sizep<.001 = very high level of confidence that finding was not by chanceHEALTH PROGRESS             www.chausa.org             SPRING 2023 63JOURNAL OF THE CATHOLIC HEALTH ASSOCIATION OF THE UNITED STATES                        www.chausa.orgHEALTH PROGRESSReprinted from Health Progress, Spring 2023, Vol. 104, No. 2Copyright © 2023 by The Catholic Health Association of the United States®

'Caring for Caregivers' Model Addresses Needs of Those Looking After Others

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