Patient, care partner, and clinician perspectives on a “good day” with dementia

Abstract

Abstract INTRODUCTION Outcome measures such as home time and institution‐free days have been proposed for use in intervention assessment among persons living with cognitive impairment (PWCI) and dementia. How well these measures capture perspectives on quality of life in dementia is underexplored. METHODS Attributes of a “good day” living with dementia were explored using semi‐structured interviews with PWCI, family care partners, and clinicians. RESULTS Seventy‐four participants were interviewed. Drivers of “good days” included balancing independence and safety, preserved cognitive function, socialization and engagement, absence of neuropsychiatric distress, and minimal caregiver burden. Drawbacks to survival‐residence composite outcome measures identified by clinicians included the role of financial resources as a determinant of amount and/or quality of home time and risk of further stigmatizing long‐term care facilities. DISCUSSION Survival‐residence composite measures that count all days in any particular setting as of equal quality may miss variation in patient‐ and family‐centered attributes of quality.