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Objectives Assisted living (AL), a popular long-term care setting for older Americans, increasingly is a site for end-of-life care. Although most residents prefer AL to be their final home, relatively little is known about end-of-life preferences and advance care planning, especially among African American residents. Our research addresses this knowledge gap. Methods Informed by grounded theory, we present an analysis of qualitative data collected over 2 years in a 100-bed AL community catering to African American residents. Data consisted of field notes from participant observation conducted during 310 site visits and 818 observation hours, in-depth interviews with 25 residents, and a review of their AL records. Results Residents varied in their end-of-life preferences and advance care planning, but united in the belief that God was in control. We identified "Turning it over to God" as an explanatory framework for understanding how this group negotiated end-of-life preferences and advance care planning. Individual-level resident factors (e.g. age, pain, and function) and factors reflecting broader cultural and societal influences, including health literacy and care experiences, were influential. Discussion Contradictions arose from turning it over to God, including those between care preferences, planning, and anticipated or actual end-of-life outcomes. [ABSTRACT FROM AUTHOR]

Meaningful engagement is a key dimension of quality of life among persons living with dementia, yet little is known about how to best to promote it. Guided by grounded theory methods, we present analysis of data collected over a 1-year period in four diverse assisted living (AL) communities as part of the study, "Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia." Our aims are to: (a) learn how meaningful engagement is negotiated among AL residents with dementia and their care partners; and (b) identify how to create these positive encounters. Researchers followed 33 residents and 100 care partners (formal and informal) and used participant observation, resident record review, and semi-structured interviews. Data analysis identified "engagement capacity" as central to the negotiation of meaningful engagement. We conclude that understanding and optimizing the engagement capacities of residents, care partners, care convoys, and settings, are essential to creating and enhancing meaningful engagement among persons living with dementia. [ABSTRACT FROM AUTHOR]

Objective: The overall goal of this analysis was to learn about residents' quality of life and quality of care in assisted living over time and from multiple viewpoints within support networks. Method: This grounded theory analysis examined qualitative data collected from 50 residents and 169 of their care network members followed over two consecutive 2-year periods in 8 diverse settings. Results: Quality involved a dynamic process of "negotiating priorities," which refers to working out what is most important for residents' quality of life and care. Resident and care partner priorities were not always consistent or shared, in part because quality is personal, subjective, dynamic, and situational. Discussion: Communication and collaboration among formal and informal care partners are vital to residents' ability to age in place with a high quality of life and quality care. [ABSTRACT FROM AUTHOR]

Background and Objectives Persons living with dementia, including long-term care residents, and their care partners emphasize the importance of meaningful engagement and stress the need for activity and opportunities to go outdoors or offsite. Yet, little is known about getting out in this population. Here, our objectives are to (a) identify residents' opportunities for, and experiences with, getting out; (b) understand the significance of getting out; and (c) explain influential factors. Research Design and Methods Guided by grounded theory methods, we analyzed qualitative data collected over a 1-year period in 4 diverse assisted living communities. We followed 33 residents with dementia and their care partners. Data include detailed fieldnotes capturing 1,560 observation hours, 114 interviews with residents (where possible), assisted living staff, family members, and other visitors, and record review. Results We identified the centrality of "being out in the world and negotiating connections," which characterizes residents' experiences with the outside world as a process of "working out" engagement with nature, others, and the community. Being out in the world was consequential to well-being and quality of life. Most residents got out at least occasionally; some lacked opportunities. Among residents who got out, most benefitted from ensuing connections. Yet, not all experiences were positive. Being out in the world varied over time and by individual-, care convoy-, assisted living community-, and neighborhood-level factors. Discussion and Implications We discuss the implications of our findings for research and practice surrounding meaningful engagement among persons with dementia, including during crises such as the pandemic. [ABSTRACT FROM AUTHOR]

Assisted living (AL) is an expanding site of end-of-life (EOL) care in the United States. Understanding determinants of quality of life (QoL) for AL residents near EOL is vital to optimize care for this growing population, most of whom have some degree of cognitive impairment (CI). This analysis aimed to identify factors associated with QoL in a diverse sample of AL residents with CI approaching EOL. Observational cross-section design. Data are from a 5-year study funded by the National Institute on Aging examining EOL care of residents in 7 diverse AL communities in metropolitan Atlanta (n = 67). CI was assessed with the Montreal Cognitive Assessment (scores ≤ 26) and QoL was determined with the self-reported QoL in Alzheimer's disease survey adapted for use in AL. Psychological distress was assessed using the Patient Health Questionnaire–4 and fatigue was assessed using the 13-item Functional Assessment of Chronic Illness Therapy Fatigue Scale. Initial descriptive analyses were followed by backward stepwise regression analyses to select a best-fitting model of QoL. The final model predicted 27% of the variance in QoL. CI was not significantly correlated with QoL and was not retained in the final model. Pain and functional limitation also did not meet inclusion criteria (P ≤.10) and were sequentially removed, producing a final model of QoL in terms of psychological distress (β = −0.28, P =.032), fatigue (β = −0.26, P =.048), and race (β = 0.21, P =.063). The lack of a significant correlation between degree of CI and self-reported QoL suggests that AL residents have the potential to experience high QoL, despite CI. Interventions to reduce psychological distress and manage fatigue could be implemented during EOL care to attempt to improve QoL for AL residents with CI. The correlation between race and QoL warrants investigation into possible racial disparities in AL and EOL care. [ABSTRACT FROM AUTHOR]

Objectives: In contrast to nursing homes, assisted living (AL) facilities emphasize independence and autonomy as part of their mission. However, we do not know to what extent this extends to sexual freedom and autonomy. Method: Using grounded theory methodology and symbolic interactionism, we examine how staff and administrators in AL facilities discuss residents' rights to sexual freedom and how this influences the environment of AL. Results: Staff and administrators engage in a contradictory discourse of residents' rights that simultaneously affirms the philosophy of AL while behaving in ways that create an environment of surveillance and undermine those rights. Discussion: A discourse of residents' rights masks a significant conflict between autonomy and protection in regards to sexual freedom in AL. [ABSTRACT FROM AUTHOR]

Assisted living (AL) is increasingly a site of end-of-life care and a long-term care location where growing numbers of people are aging in place and dying. Despite these trends, limited research focuses on how death and grief impact the work environment in AL. This grounded theory analysis examined qualitative data collected from 27 administrators and 38 direct care workers (DCWs) in 7 diverse settings. As assisted living administrators and DCWs experienced resident death, they engaged in a dynamic and individualized process of "managing the normalization of death," which refers to the balance of self-identity and workplace identity. The process of reconciling these opposing contexts in AL involved several individual- and community-level conditions. Administrators and DCWs would benefit from additional resources and training around death. Increasing collaboration with hospice and clarifying policies about death communication would better prepare the workforce to acknowledge the end of life in assisted living. • Assisted living is increasingly a site of end-of-life care, but it is not often openly discussed • Direct care workers provide important hands-on care at end of life. • Administrators and direct care workers regularly experience resident death in assisted living. • Administrators and direct care workers desire more resources and training around death and grief in assisted living. [ABSTRACT FROM AUTHOR]