“His reality certainly isn’t the reality that we know”: Care partner responses to differing realities among assisted living residents with dementia

Abstract

AbstractBackgroundIn the United States and elsewhere, assisted living (AL) has become a primary provider of residential long‐term care for persons living with dementia. Residents typically are supported by care convoys, or networks, comprised of their family and friends, AL staff, as well as external care providers, all of whom exert influence on residents’ daily lives. As with other persons living with dementia, AL residents sometimes experience confusion over time, place, and scenario. Care partner responses to these differing realities are consequential to residents’ care experiences, quality of life, and ability to engage with others and in activities they find meaningful. Here, we examine, in‐depth, care partner responses to residents' confusion, the complex factors influencing their reactions, and the resulting outcomes.MethodWe present analysis of qualitative data gathered from the study, “Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia,” involving six diverse AL communities, each studied for a one‐year period. Researchers conducted 2,109 hours of participant observation captured in detailed fieldnotes. We also followed 59 residents with dementia and 167 of their care partners, conducting interviews to learn how best to promote meaningful engagement. Specifically, we analyzed all data relevant to residents’ “differing realities” and “care partner responses.”ResultCare partners varied in their responses to residents’ differing realities. Some, including many AL staff, routinely attempted to redirect residents by changing the subject and/or physically redirecting (e.g., if a widowed resident was searching for her husband). Certain care partners joined residents by attempting to understand their realities and “going along with them.” A small minority of care partners, mostly family members, ignored or attempted to correct or truth tell. Factors affecting care partner responses included: the nature of resident confusion and associated expressions and a care partner’s role, dementia knowledge and care resources, beliefs, and experiences. Truth‐telling or correcting frequently, though not always, led to frustration, anxiety, and socially withdrawing whereas responses that acknowledged the person’s reality frequently had better resident outcomes.ConclusionFindings have implications for training, practices, and policies aimed at enhancing care interactions and quality of life among persons living with dementia.