Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents’ record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.
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: 1) identify residents’ opportunities for, and experiences with, getting out; 2) understand the significance of getting out; and 3) explain influential factors.
Research Design and Methods
Guided by grounded theory methods, we analyzed qualitative data collected over a one-year period in four 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-, convoy-, AL 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.
In assisted living (AL) facilities, workers are intimately involved in the lives of residents. Existing research on AL demonstrates the imbalance of this environment, which is a personal home for the residents and a workplace for staff. Using observational and interview data collected from six AL facilities, this grounded theory project analyzes how AL staff define, understand, and negotiate sexual comments, joking, and physical touch. We developed a conceptual model to describe how such harassment was perceived, experienced by AL workers, and how they responded. Sexualized behavior or harassment was experienced by workers of every status. We found that words and actions were contextualized based on resident and worker characteristics and the behavior. Staff members refused to engage residents, redirected them, or reframed the words and gestures to get the job done. Reporting the incidents was less common. We conclude by discussing implications for policy and research.
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