Abstract
Background:The onset and progression of dementia can result in changes in the subjective experience of self, impacting on psychological health.Objective:We aimed to explore the extent to which people with mild-to-moderate dementia experience discontinuity in the subjective experience of self, and the factors associated with this experience for people with dementia and their family caregivers.Methods:We used data from the baseline assessment of the IDEAL cohort. Discontinuity in the subjective experience of self was assessed by asking participants about their agreement with the statement ‘I feel I am the same person that I have always been’. Participants were divided into those who did and did not experience discontinuity, and the two groups were compared in terms of demographic and disease-related characteristics, psychological well-being, measures of ‘living well’, and caregiver stress.Results:Responses to the continuity question were available for 1,465 participants with dementia, of whom 312 (21%) reported experiencing discontinuity. The discontinuity group experienced significantly poorer psychological well-being and had significantly lower scores on measures of ‘living well’. There was no clear association with demographic or disease-related characteristics, but some indication of increased caregiver stress.Conclusion:A significant proportion of people with mild-to-moderate dementia describe experiencing discontinuity in the subjective sense of self, and this is associated with poorer psychological health and reduced ability to ‘live well’ with the condition. Sensitively asking individuals with dementia about the subjective experience of self may offer a simple means of identifying individuals who are at increased risk of poor well-being.
Highlights
Good psychological health crucially underpins positive evaluations of quality of life, well-being, and satisfaction with life among people with mildto-moderate dementia [1]
Developing dementia has been considered as a threat to selfhood and identity [6] due to the resulting biographical disruption, which is especially evident in young-onset dementia [7, 8], and the impact on roles and relationships [9], as well as the characteristic impairments in cognition, especially memory, which could crucially affect the experience of self
In this study we aimed to explore the extent to which people with mild-to-moderate dementia experience a sense of phenomenological discontinuity, the way in which the experience of those who feel they are ‘not the same person’ differs from those who retain a continuous sense of self, and the factors that are associated with disruption to the ontological self for both people with dementia and family caregivers
Summary
Good psychological health crucially underpins positive evaluations of quality of life, well-being, and satisfaction with life among people with mildto-moderate dementia [1]. The subjective experience of self and personal identity potentially offers a unifying construct that may help to link these facets together. The onset and progression of dementia might result in changes in the experience of self and identity, and impact on psychological health. The onset and progression of dementia can result in changes in the subjective experience of self, impacting on psychological health. Participants were divided into those who did and did not experience discontinuity, and the two groups were compared in terms of demographic and disease-related characteristics, psychological well-being, measures of ‘living well’, and caregiver stress. Conclusion: A significant proportion of people with mild-to-moderate dementia describe experiencing discontinuity in the subjective sense of self, and this is associated with poorer psychological health and reduced ability to ‘live well’ with the
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