Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia

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PROJECT SUMMARY/ABSTRACT Assisted living (AL), one of the fastest growing residential long-term care options in the US, is home to nearly one million older adults, many of whom are advanced in age, physically and cognitively vulnerable, and have multiple morbidities, including dementia. On a daily basis, residents and those who care for them, including staff, residents’ family and friends, and external workers encounter uncertainty and conflict about values as do researchers in these settings. Prior to the pandemic, which is exacerbating uncertainty, AL communities were rife with ethical issues with implications for resident quality of life and care and care partners well-being. Yet, with few exceptions, mainly our recent work, research has overlooked ethical issues in AL and critical knowledge gaps remain. Our research suggests that “identifying ethical issues and the underlying principles” is key to promoting “ethically sound practices.” An in-depth understanding of ethics in AL is needed for effective policy and resource development. In this project, we build on existing work, including a typology we developed using pre-pandemic data. Our aims are: 1) To apply the typology of “Ethical Issues in Assisted Living” to data collected during the pandemic to further characterize the nature, types, and frequency of previously-identified types of ethical issues, and to identify newly emerging issues, especially those relating to the COVID-19 pandemic; and 2) To develop educational materials and training for researchers in order to build capacity for the identification and understanding of ethical issues working in assisted living and with persons living with dementia and their care partners. We address our aims using data from the parent project, “Meaningful Engagement and Quality of Life among AL Residents with Dementia.” This five-year study seeks to learn from residents and their care partners and involves studying daily life and care routines. Supplement findings will elucidate the ethical context in this complex care setting and provide a base of evidence to inform policy and practice recommendations aimed at improving assisted living resident quality of life and quality of care and reducing moral stress and distress among care partners. Findings also will build capacity and guidance for researchers in the AL space with implications more broadly for research in long-term care and caregiving studies, as well as research involving persons living with dementia. Accomplishing our aims will ultimately enhance the overall impact of the parent project and advance bioethics research.