Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

This is the final version. Available on open access rom Wiley via the DOI in this recordData availability statement: IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: https://reshare.ukdataservice.ac.uk/854293/. This study reports data from v5 of the IDEAL datasets.Objectives Awareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis and appropriate post-diagnostic support. Methods Using longitudinal data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, awareness in community-dwelling people with mild-to-moderate dementia was assessed at three timepoints over 2 years. A validated checklist was used to evaluate awareness of difficulties associated with dementia. We examined changes in awareness for people with low awareness at baseline, and used case-matching to describe differences in characteristics between people who gained awareness, and those who continued with low awareness. Results At baseline, 83 people from a sample of 917 showed low awareness. The majority of those remaining in the study at later timepoints had gained awareness, some as late as four or more years after diagnosis. Case-matched comparisons revealed few distinguishing characteristics: cases with stable low awareness had similar or better cognitive and functional ability than those who gained and retained awareness at 12 and 24 months, but may have had more co-morbidities. Conclusions Self-reported awareness of difficulties can change and may increase over time in people with mild-to-moderate dementia. There may be individual reasons for ongoing low awareness, not explained by cognitive or functional ability. This challenges the view that a single record of low awareness represents a fixed disease-related symptom, and highlights the complex, individual and dynamic nature of awareness.Alzheimer's SocietyEconomic and Social Research Council (ESRC)National Institute for Health Research (NIHR