Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme

Abstract

Background People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. Methods This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. Results There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Conclusions Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.

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

“…Alternatively, depression is known to influence awareness in dementia 10 . People with depression are often more aware of their difficulties 49 and pessimistic about their abilities, and lower awareness of dementia has been associated with less depressed mood 18 . However, in our case comparisons, the 10 cases generally had low GDS‐10 scores indicating mood was not depressed.…”

“…Although no clear differences were seen in personality traits or positive psychological attributes, the PG cases maintained better scores for QoL, life‐satisfaction and wellbeing, before and after awareness gains were shown. This is surprising, and contrasts with lower QoL scores in the group who showed awareness at baseline 18 . Conclusions on whether awareness relates positively or negatively to QoL remain mixed 50 .…”

“…Psychosis and other neuropsychiatric symptoms can co‐exist with impaired awareness, particularly in more severe dementia, but are clinically distinguishable and correlations are inconsistent 48 . Here, the SL cases had a low reported number of neuropsychiatric symptoms, as also seen in the overall cohort 18 . Alternatively, depression is known to influence awareness in dementia 10 .…”

“…Using the validated screening checklist of nine items from the Representations and Adjustment to Dementia Index 23 (RADIX), self‐reports at each timepoint were categorised as either showing awareness or having low awareness of condition 18 . People with dementia who endorsed one or more items were considered to show awareness whilst those who did not endorse any of the nine items were considered to have low awareness.…”

“…For people unable to recognise symptoms or not ready to discuss dementia, untimely information could be confusing or harmful 15 . Focusing on maintaining the status quo may assist coping 16 ; lack of awareness of future decline may help preserve quality of life (QoL), 17 and being less aware of dementia symptoms may sustain better mood and greater perceived ability to ‘live well’ 18 . However, support needs may change if individuals become more aware of their condition.…”