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

Abstract

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.

Trajectories of cognitive and perceived functional decline in people with dementia: Findings from the IDEAL programme

“…This could comprise qualitative interviews at regular intervals and a brief objective measure of iADL with corresponding appraisal ratings; this would allow for a deeper understanding of how caregivers and people with dementia perceive iADL difficulties as well as help understand changes in caregiver adjustment, coping strategies, and stress/burden. This is especially salient as coping strategies, adjustment, and burden influence how informants rate iADL difficulties, 10,40,[45][46][47] and higher perceived stress is often associated with more perceived iADL difficulties. 3,10,15,17,19 How ratings accord with actual abilities is unknown, though a previous study found that people with mild-to-moderate dementia were able to rate performance on iADL tasks more accurately than corresponding ratings by their caregivers, particularly with tasks that do not largely rely on intact memory ability; for example, telling the time, or identifying medication.…”

“…This could comprise qualitative interviews at regular intervals and a brief objective measure of iADL with corresponding appraisal ratings; this would allow for a deeper understanding of how caregivers and people with dementia perceive iADL difficulties as well as help understand changes in caregiver adjustment, coping strategies, and stress/burden. This is especially salient as coping strategies, adjustment, and burden influence how informants rate iADL difficulties, 10 , 40 , 45 , 46 , 47 and higher perceived stress is often associated with more perceived iADL difficulties. 3 , 10 , 15 , 17 , 19 …”

How do person‐centered outcome measures enable shared decision‐making for people with dementia and family carers?—A systematic review

“…This would empower the family carer to use the PCOM to identify concerns and discuss priorities for care. There are individuals with no family members, 51 but who may have close friends who act as their support; therefore the use of a PCOM could also be beneficial for such individuals. People with dementia living at home transition between care settings, particularly nearer to end of life 52,53 .…”

Quality of Life and the Experience of Living with Early-Stage Alzheimer’s Disease

“…Therefore, we cannot rule out that the negative impact on quality of life has been underestimated in our study. Second, the cross-sectional design of the study does not allow us to identify any changes in the patient’s perception of quality of life over time [ 25 ]. Third, we acknowledge a potential selection bias given that those people most motivated to collaborate or with a better relationship with their physicians may have enrolled in the study.…”