Bangerter, Lauren R.

Abstract To date, nearly 40 U.S. states have passed the Caregiver Advise Record and Enable (CARE) Act to support family caregivers during transitions from hospital to home. These laws require hospitals to: 1) record designated family caregivers’ name in a patient medical records during a hospital stay; 2) inform the caregiver when the patient will be discharged; 3) provide education and instructions on care tasks needed for post-hospital discharge. Transitions from hospital to home are often fraught with adverse event risk and poor continuity of care, especially for rural patients with progressive life-limiting conditions. The CARE ACT has potential to address healthcare system factors that are sometimes attributable to poor transitions in care. Our presentation focuses on preliminary findings from an intervention that provides teaching, guidance, and counseling to caregivers caring for an individual receiving palliative care in the hospital and transitioning home to a rural setting. Findings suggest that the CARE ACT may be vital, but not fully sufficient, for successful transitions. Additional targets for caregiver interventions to improve transitions for this subset of very ill patients include: 1) attend to caregivers’ medical and non-medical needs which may impact their capacity to provide care; 2) advise clinical teams to communicate truthfully about prognosis and likely outcomes when creating post-hospital plans of care; 3) encourage caregivers to identify and engage services early in the transition; 4) urge caregivers to draw on multiple sources for social support. Findings can help optimize the CARE Act implementation, particularly in states with large rural populations.

Abstract Both family caregivers and providers report numerous challenges to providing care for of adults with Alzheimer’s disease and related dementias (AD/RD). Many of these challenges stem from ineffective communication and coordination within the health and support service networks, including: (1) communication challenges posed by AD/RD patients; (2) communication barriers between caregivers and providers; and (3) communication barriers among providers across institutions. Caregivers increasingly rely on technology to fill gaps in their knowledge, identify social support, and learn how to execute more complex care demands. While technology has been suggested as an effective strategy for improving the quality of AD/RD care and support caregivers, the role that public policy and research can and should play in advancing the goal of such tech-based solutions is still emerging. This is especially true in respect to how technology can strengthen care networks for patients and caregivers who are racial/ethnic minorities and/or living in rural communities. This presentation will identify the role that past legislation (e.g. the Affordable Care Act, HITECH, Medicaid) has played, as well as the role that recent and proposed legislation (e.g. RAISE Caregiver Act, CARE Act, 21st Century Cures Act, BOLD Infrastructure for Alzheimer’s Act, Older American’s Act reauthorization) should play in strengthening the health, support networks that caregivers interact with to provide ongoing care. This presentation will also summarize the current state of research on caregiver technologies and discusses how future research and policy initiatives can promote the translation of tech-based interventions into everyday care settings.

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer’s disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers ( n = 42), three included non-spousal caregivers ( n = 36), and one included people with MCI ( n = 15). Seven potential best practices were identified, including the following: “acknowledge caregivers’ role and assess unmet needs and capacity to care” and “communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers.” Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

PURPOSE: We aimed to better understand how similarly patients with colorectal cancer and caregivers view care quality and to assess factors that may influence concordance. MATERIALS AND METHODS: We conducted a secondary analysis of paired patient and caregiver quality ratings of colorectal cancer care in three specific domains: surgery, chemotherapy overall, and chemotherapy nursing. Agreement was assessed with difference scores, concordance with Gwet second-order agreement statistics (AC2), and variation in agreement with stratified analyses. We examined whether the care experiences of patients and caregivers were associated with top-box (most-positive) ratings and examined variations in concordance on the basis of the presence of a top-box score. RESULTS: Four hundred seventeen patient-caregiver dyads completed the surveys. Quality-of-care ratings were positively skewed, with most dyads indicating top-box ratings. Patient and caregiver care experiences were highly associated with top-box ratings. Overall patient-caregiver concordance was very high for all three care domains (surgery: AC2, 0.87 [95% CI, 0.83 to 0.90]; chemotherapy overall: AC2, 0.84 [95% CI, 0.79 to 0.88]; chemotherapy nursing: AC2, 0.91 [95% CI, 0.87 to 0.94]). Stratified analyses of patient and caregiver characteristics did not identify any patterns that consistently affected concordance. The concordance statistic significantly decreased for all three outcomes ( P < .001), however, when the patient or caregiver assessed quality as anything other than top box. CONCLUSION: Caregiver and patient reports on care quality were highly concordant for top-box care and did not vary with patient or caregiver factors. Additional exploration is needed to identify reasons for increased variability when the quality scores were less than a top-box response.

Abstract Knowledge of individuals’ everyday preferences is a cornerstone of person-centered care (PCC). Initial evidence demonstrates the positive impact of honoring preferences in care for older adults receiving long-term services and supports (LTSS). Yet, the mechanisms through which preference-based care affects individual well-being remain poorly understood. This article proposes a theoretical model of PCC entitled the Preference-Based Model of Care that integrates the Theory of Human Motivation, Self-determination Theory, the Competence-Press Model of person and environment fit, the Living Systems Framework, and the Broaden-and-Build theory of positive emotions to deepen our understanding of the processes through which preference-based care affects well-being among older adults receiving LTSS. The Preference-Based Model of Care illustrates how goal-directed behaviors facilitate need fulfillment through the expression of individual preferences and how these behaviors mediate the relationship between person–environment fit and affect balance within a particular social, cultural, and political context. The Preference-Based Model of Care can advance research on PCC in LTSS and can inform LTSS clinical practice guidelines for older adults, regardless of functional or cognitive capacity.

Abstract Background The majority of aging adults with heart failure (HF) receive support from a family caregiver. Most literature has emphasized the stressors and burden of caregiving, with less focus on positive self-gains associated with caregiving. Methods and Results Using an explanatory sequential design, we assessed self-gain by administering a survey to caregivers of a person with HF (n = 108) and then conducted qualitative semi-structured interviews with a subset (n = 16) of these caregivers. Quantitative results indicate spousal caregivers, and caregivers with higher preparedness and higher mastery had greater odds of reporting high self-gain. Content analysis of qualitative data revealed 3 themes of self-gain including (i) caregiving as a means to enhancing relationships, (ii) success in negotiating care and healthy behaviors with people with HF, and (iii) caregiving as a means of preparing caregivers for the future. Conclusions HF caregivers experience a range of positive self-gains and the ability to find meaning in the stressful caregiving role. Caregivers’ ability to garner intrinsic gains from their role can have important benefits well after caregiving has ended.