Developing a new clinical interview to assess awareness in dementia.

Abstract

AbstractBackgroundPeople with dementia differ in degree of awareness of difficulties. Awareness can influence well‐being, communication and relationships, and impact on personal safety and decision‐making in everyday and clinical situations. Evaluating awareness could facilitate person‐centered care. A scoping review identified the lack of a brief, multidimensional clinical tool. We aimed to develop and test a new awareness interview for clinical use.MethodMeasure development was informed by scoping review findings, available evidence about awareness phenomena in dementia, and considerations of suitability for remote as well as in‐person administration. Some items were drawn from existing validated measures, covering awareness of functional ability, memory, and socio‐emotional functioning, and new items were developed to assess awareness of medication management and mobility, providing a profile of awareness across these domains. Scoring was based on calculation of discrepancies between self‐rating and either informant ratings or objective memory task performance, as well as self‐reported acknowledgement of specific symptoms. The interview was tested for feasibility and acceptability in a remotely‐administered pilot study. The interview was administered to 31 community‐dwelling people with mild‐to‐moderate dementia recruited in England in 2020‐2021, via telephone or Zoom video‐call. A caregiver, acting as an informant, completed a corresponding questionnaire in advance. Cognitive ability of the participant with dementia was assessed with the Montreal Cognitive Assessment‐5 minute protocol (MoCA‐5 min). Structured and open‐ended feedback was obtained from participants and caregiversResultThe interview was completed by 29 participants with MoCA‐5 min scores ranging from 9.5 to 29.Two participants with lower MoCA‐5 min scores were unable to complete the interview. Remote administration was straightforward with few challenges, taking on average under 11 minutes. Awareness profiles showed a spectrum of awareness across domains. Feedback indicated that interview questions were acceptable and understandable, but certain aspects, such as the memory task, could be somewhat upsetting as they highlighted current difficulties.ConclusionThe new Healthcare Awareness Profile Interview (HAPI) shows potential as an evidence‐based brief clinical tool for assessing awareness in people with mild‐to‐moderate dementia. Following discussions with clinical advisory and patient and public involvement groups, a final version will be prepared for a larger validation study.