Family care partners experiences of delirium in caring for a person with dementia: Qualitative descriptive study

Abstract

AbstractBackgroundDelirium in persons with dementia is common, distressing, and associated with poor outcomes not only for the older adults, but also for their family care partners. There is a practice and science gap in understanding the role care partners’ may play in the prevention, recognition, and management of delirium in persons with dementia, as well as care partners’ needs, necessary to inform co‐designed interventions to improve the lives of the dyad. This study explored family care partners’ understanding and experience related to delirium as well as their preferences in terms of need for education, support, and resources.MethodQualitative descriptive design was employed. Data were collected from 16 family care partners (age x̄ = 65, SD = 13.2) of persons with dementia using demographic questionnaires and semi‐structured in‐depth interviews [telephone (N = 7); Zoom video conference (N = 9)]. Demographic data of the sample were described. Qualitative thematic analysis revealed patterns and themes. The reporting of this study followed the criteria for reporting qualitative studies in the (COREQ) 32‐item checklist.ResultSix themes emerged: : (i) distressing sentiment; (ii) unexpected manifestation of delirium, (iii) unfamiliarity with delirium; (iv) changing roles; (v) complexities of delirium and dementia management; and (vi) longing for support. ConclusionBalancing the care needs relating to pre‐existing dementia, while simultaneously identifying and managing delirium is difficult for family care partners. Challenges were related to communication, differentiating signs of delirium from dementia, lack of resources, and uncertainty and fear about the future. Providing education about delirium to family care partners through trained clinicians exhibits a promising approach, but utilization of existing community resources should also be encouraged. Care partner experiences should be valued and future research should involve family care partners in co‐designing therapeutic interventions to promote family care partners’ well‐being and to boost their confidence and efficiency in their caregiving role. Implications for practice, research, and policy will be discussed.