Sheryl Zimmerman’s research while affiliated with University of North Carolina at Chapel Hill and other places

INTRODUCTION Differences in adaptive strategies used by individuals and families living with dementia have the potential to impact day‐to‐day well‐being. The Living Well Inventory for Dementia (LWI‐D) is a new measure to capture these strategies and to illuminate new options to support families living with dementia. The Quality of Day Scale (QODS) is a new measure to capture global well‐being in persons based on a shorter temporal frame than traditional quality of life measures. This article summarizes the initial evaluation of the LWI‐D and the QODS for face validity, content validity, and user acceptability. METHODS Initial acceptability and feasibility testing were conducted with a sample of 17 community‐dwelling individuals with early‐stage dementia (Montreal Cognitive Assessment [MoCA] scores of 12–30). After revision and optimization of the two measures, a second pilot test was conducted with a sample of 30 dyads (persons living with dementia and family caregivers) in nursing home, assisted living, and community settings. RESULTS Data from both pilot studies are reported including item analysis and quantitative and qualitative results. Outcomes related to convergent validity between the LWI‐D and the QODS with measures of positive affect‐balance, quality of life, and well‐being are presented. Within‐dyad differences in ratings on both measures are discussed. DISCUSSION The LWI‐D and the QODS are developing measures that warrant further testing and may enhance the ability to (1) identify strengths in living well with dementia, and (2) identify and test new interventions to bolster care and support. Highlights This article describes the process used to develop and test two new measures for research and clinical practice related to positive psychosocial approaches to dementia. The measures were developed with a team that included persons living with Alzheimer's disease as co‐researchers in the process. A novel method of human‐centered design was used to cultivate deep empathy, generate options, and conduct small, iterative tests of prototype measures.

Systems perspectives generally identify three levels of action: the interpersonal (micro) level, the institutional (meso) level, and the broader societal (macro) level. Person-centeredness is generally viewed at the interpersonal level, but especially in the context of health and supportive care, broader systems can shape and impact the quality and outcomes of these one-on-one interactions. To better understand how and why person-centeredness varies across health care settings (e.g., hospitals, nursing homes), we conducted interviews and convened think tank meetings with 31 diverse stakeholders including direct care workers, administrative staff, consumer advocates, and academic researchers focusing on care of older persons. Prompts asked examples of person-centeredness (or lack thereof) in numerous settings. The following themes were identified that help explain the wide range in person-centeredness across health care settings: 1) variation in system goals related to person-centeredness; 2) variation in systems’ perceived need to limit person-centered; 3) relationships between resource availability and person-centeredness; 4) cultural values and societal inequity as root causes of much variation in person-centeredness; and 5) influence on person-centeredness of the degree to which hospitality is a core value within a given system. Understanding and responding to these themes within a given setting may more effectively help meet resident needs and preferences; it also has implications for policymaking, such as creation of training guidelines for care staff and benchmarks for program leaders.

Accreditation is a widely used health care review process to determine if an organization meets a defined standard of quality. The opportunity for accreditation recently moved into the field of assisted living (AL); today, seven states have statutes and regulations allowing third party accreditation to satisfy full or partial compliance with state licensure or certification. Data indicate that compliance with accreditation standards may result in improved care, but it has not been evaluated in AL. In 2021, the state of North Carolina funded an AL accreditation pilot program to evaluate whether accreditation improves or maintains quality. Communities were randomly allocated to a control or accreditation arm and are being followed for two years to evaluate care and outcomes in five areas (workforce, resident outcomes, care coordination and transitions, medication management, person-centered care). Of the 146 communities originally enrolled that provided data, most are for-profit (96%) and part of a chain (73%); 44% pf residents have dementia, 25% have mental illness, and 53% receive state financial assistance. Preliminary results in the first two quarters (Q) found an overall increase in advance care planning discussions (53% in Q1 and 63% in Q2), and a decrease in medication administrations with one or more errors (1.2% in Q1 and 0.6% in Q2). This session will present results comparing communities in the control arm, accreditation arm, and those that successfully achieved accreditation, with findings having wide-ranging implications for the future of AL accreditation and regulation in North Carolina, and implications across the country.

Across the first three years of the Alzheimer’s Association Interdisciplinary Summer Research Institute (AA-ISRI), 98% of respondents indicated they were satisfied with the program, 95% felt the program increased their understanding of Alzheimer’s, and 90% said the program improved their independent research skills. Alongside the positive reception of AA-ISRI, feedback from participants, faculty, and faculty leadership led to several adjustments and changes to the structure and content of the program. For example, breakout sessions meant to provide deeper exposure to issues targeted to either public health or psychosocial research were found to be of relevance to both tracks of trainees, informing overlapping needs despite the particular area of focus. This and other changes have refined the overall flow of the program, the relevance of information shared, and the recruitment and selection of appropriate participants. This presentation will review the key lessons learned that have helped to shape the AA-ISRI over the first three years, future improvements that have been discussed for subsequent years of the program, and ideas and considerations for organizations looking to implement similar programs for researchers, and mentors working with individual mentees.

The concept of person-centeredness centers on knowing the person in a holistic perspective and meeting the individual’s needs and preferences. The term person-centeredness has become ubiquitous in health and supportive care, and with this there are varying definitions and understandings on how to achieve person-centeredness. This symposium focuses on reconstructing person-centeredness, specifically exploring various perspectives that are imperative in reconstructing this term. First, Efird-Green will explore the conceptualization of person-centeredness through the results of a systematic review of current definitions of person-centeredness. Second, Sloane will present on the results of interviews and think tank meetings with diverse stakeholders to better understand how and why person-centeredness varies across health care settings. Third, Stratton will discuss the results of a think tank with Alzheimer’s Association Dementia Care Provider Roundtable members that highlight how person-centeredness is integrated in the long-term care workforce and potential ways to improve and train employees on this concept. Lastly, Fazio will provide a global perspective through survey results from Alzheimer’s Disease International members on their perspectives and experiences with quality of dementia care, definitions of person-centered dementia care, and the challenges and successes of person-centered dementia care in their countries. Overall, this symposium will provide relevant perspectives to consider in the reconstruction of person-centeredness.

The National Institute on Aging recently funded the $15.6 million NEXT STEPs (Nursing home EXplanatory clinical Trials: Supporting Transformation by Enhancing Partnerships) initiative to create the organizational structure, processes, and procedures to develop a sustainable, diverse network of nursing home (NH) partners and researchers conducting clinical trials to guide optimal care. The perspectives and participation of interdisciplinary clinical providers and researchers are critical to inform the launch and activities of this innovative network. In addition to leveraging existing infrastructure and collaborations, NEXT STEPs embraces a comprehensive perspective of NH research that addresses six key elements of successful trials: 1) Designing the intervention, including anticipation of the study’s potential burden on NH staff and residents, and potential regulatory issues; 2) Ensuring equity throughout the trial’s design, conduct, analyses and dissemination; 3) Recruiting both NHs and individual participants, such as assessing and communicating the value of a given intervention to residents, providers, staff or leadership; 4) Cultivating engagement throughout the project, including plans to monitor and respond to internal or external events that affect projects; 5) Assessing outcomes, including identifying metrics and reliable data sources that can be used across projects; and 6) Following up and following through on communicating results and developing sustainable paths to implement successful interventions. Activities of this project will be guided through deep involvement with partner workgroups. This presentation will describe the evidence that supported the key elements and highlight the opportunities available for researchers, providers, and advocates to participate in the NEXT STEPS initiative.

Almost 1.7 million people in the U.S. receive residential long-term care, more than half who reside in assisted living -- broadly defined as congregate settings that provide at least two meals a day, around-the-clock supervision, and help with personal care. Whereas nursing homes are federally regulated, assisted living is state regulated, which recognizes it as a community-based setting and allows for innovative practices and policies to promote better care and outcomes. Over the years, numerous state-based initiatives have been enacted across the country; this session will discuss new initiatives in two states, addressing their implementation, findings, and broad implications. Minnesota’s legislation recently created an online report card based on resident and family surveys; the presentation by Dr. Shippee will overview three years of data from more than 12,000 residents, noting the areas scored most favorably (e.g., environment) and least favorably (e.g., engagement). Dr. Moone will discuss the Minnesota assisted living regulatory framework and how the absence of broad representation in licensure development resulted in inconsistency in and preparation for survey inspections, as well as inadequate reimbursement. North Carolina recently undertook a statewide randomized trial of accreditation for assisted living; Ms. Efird-Green will discuss challenges implementing accreditation in more than half of the communities, and Dr. Zimmerman will present two years of outcome data comparing control and accreditation arms in relation to workforce and resident outcomes, care coordination and transitions, medication management, and person-centered care. Results will be put in context to inform quality initiatives across the country.

The concept of person-centeredness (PC) has become commonplace in health and supportive care, and perhaps for this very reason, there is no agreed upon understanding as to what constitutes “person-centeredness.” To clarify the concept, a systematic review of current definitions of PC in the literature was conducted; it revealed that most papers referencing person-centered or patient-centered interventions do not define the term, and that definitions that when they do, they vary widely. Given the benefit of having a common understanding of PC, think-tank meetings were held with 65 experts in the fields of health and aging policy, research, and practice. The experts were provided numerous prompts (e.g., in the context of being person-centered, how do issues of dependency and competency enter in?); responses indicated that they conceptualize and implement the concept of PC differently at the macro, meso, and micro levels. At the macro level, there is a focus on core values, the influence of privilege and oppression, and how PC is implemented – or not – in systems and cultures. On the meso level, there is a focus on organizational responsibility, the applicability of PC to various communities, and the importance of relationships. On the micro level, PC is focused on care, including individualization and personalization, the importance of care partners/family, and the limitations of PC in individual settings. This presentation will address the three levels of PC, including each level’s focus, implementation, and challenges, with the goal of establishing a multilevel conceptualization of PC.

Professional caregivers (direct care workers) perform most of the care for residents in assisted living (AL) and have consistently high turnover rates. Because high turnover is associated with low job satisfaction and decreased quality of care, understanding professional caregiver satisfaction can inform approaches to improve the well-being of both staff and residents. This study obtained information from 559 professional caregivers from 69 AL communities to explore job satisfaction, burnout, and how satisfaction varies based on professional caregiver and AL characteristics (e.g., resident-case mix, staffing ratio). It also established the validity of the Direct Care Worker Job Satisfaction Scale (scored 1-4) as applied to this population through a principal components analysis. Principal components analysis produced a single-factor solution with an eigenvalue of 10.8, the only eigenvalue above 1. All scale items loaded at least 0.70 on the single factor. Overall, professional caregivers had an average satisfaction of 3.05 (“satisfied”), and 18.5% were burned out; satisfaction and burnout were negatively correlated (-0.46, p< 0.0001; adjusted -0.43, p< 0.0001). Satisfaction was positively correlated with the percent of residents with dementia (0.19, p< 0.0001) and provision of special/memory care at their AL community (0.17, p< 0.0001); it was negatively correlated with the professional caregiver-to-resident staffing ratio (-0.18, p< 0.0001) and presence of licensed nursing staff (-0.27, p< 0.0001). Results suggest that caring for individuals with dementia is particularly rewarding for professional caregivers, while being responsible for more residents and working alongside licensed nursing staff may lessen satisfaction.