Does awareness of condition change over time in people with mild‐to‐moderate dementia? Longitudinal findings from the IDEAL cohort

Abstract Background Although awareness is known to vary in people with dementia, little is known about longitudinal trajectories of awareness of condition in people with mild‐to‐moderate dementia. Exploring this could help understand the concepts around awareness, and reasons for apparent impaired awareness, relevant to person‐centered care. Method We used longitudinal data from the IDEAL programme for 917 community‐dwelling people diagnosed with mild‐to‐moderate dementia. Using a validated checklist, we assessed awareness of personal difficulties associated with dementia at three timepoints over two years. Changes in awareness from baseline were examined. Focusing on people with low awareness at baseline, we used case‐matching to compare characteristics between people who gained awareness over time, and those who continued with low awareness. Result At baseline, 83 people showed low awareness of personal dementia‐related difficulties. Following up this group, after attrition we examined data for 49 people at T2 and 25 people at T3. Most people remaining in the study had gained awareness at T2 and T3. Gains were seen up to four or more years after diagnosis. Five people continued to deny any of the common difficulties associated with dementia at all timepoints. These five reported slightly more comorbid conditions than matched cases. Few other distinguishing features were evident but in comparison, the people who came to acknowledge difficulties showed greater deterioration in cognitive and functional ability by T3. Conclusion Over time, self‐reported awareness of dementia‐related difficulties can change in people with mild‐to‐moderate dementia. Awareness gains, seen in most people remaining in the study at T2 and T3, may have been prompted by deteriorating abilities. Reasons for ongoing low awareness were difficult to establish and may relate to individual circumstances including comorbidity. This highlights the individual complexity and dynamic nature of awareness in dementia and challenges the concept of impaired awareness as a fixed disease‐related condition.