Patient-reported experience measures for people living with dementia: A scoping review

The prevalence of dementia is increasing globally, with an estimated 139 million people expected to be living with dementia by 2050. Across numerous countries, substandard care for people with dementia is evident, with quality improvement needed. Recently, a focus on patient-reported experience measures (PREMs) has been utilised in healthcare services as a method of evaluating the care experiences provided and determining areas of improvement. The literature is scarce regarding the feasibility and acceptability of implementing PREMs with people with moderate to advanced dementia. This scoping review aimed to identify PREMs that have been used with vulnerable populations including people with cognitive impairment, mental health concerns, and children, outline dimensions included, and determine adaptions made to the PREMs to improve acceptability of the instruments for vulnerable populations. A database search of Medline was conducted to identify 36 studies including 32 PREMs. The PREMs identified covered a range of dimensions, most frequently care effectiveness, care environment, and patient involvement. The most common adaption to the PREMs was simplification of wording and sentence structure. Several measures conflated patient outcomes and patient satisfaction with patient experience, limiting utility for improving patient experience specifically. While several PREMs have been used with people with dementia, challenges in their implementation and their applicability to specific settings limit their use more broadly. Evidently, there is a need for development of a PREM for people with moderate to advanced dementia that is applicable across healthcare settings and is appropriately adapted for varying cognitive and communicative barriers.