Abstract
Objectives: Studies of retrospective personality change with dementia consistently find caregivers report large changes in personality (e.g., increases in neuroticism) of their care recipients compared to before dementia. This work seeks to replicate the established pattern of personality change, extend it to change in psychological distress, well-being, and social connection, and evaluate whether changes vary by stage of dementia.Methods: Caregivers of people with dementia (N=188) reported on the psychological and social health of their care recipient currently and how they were before they developed dementia. Personality was measured as five factor model traits. Psychological distress was measured as symptoms of depression and anxiety, perceived stress, and pessimism. Psychological well-being was measured as purpose in life, life satisfaction, happiness, self-efficacy, and optimism. Social connection was measured as loneliness, belonging, social support, and social strain.Results: There were substantial increases in neuroticism (d=1.14) and decreases in the other four personality traits (d range=−.85 to −1.37). There were significant increases in psychological distress (e.g., d=1.07 for depression) and substantial decreases in well-being (e.g., d=−1.18 for purpose in life) and social connection (e.g., d=−1.12 for belonging). Change was apparent across dementia stage and generally larger in more severe dementia.Discussion: In addition to personality, there are large retrospective changes in psychological distress, well-being, and social connection with dementia. These quantitative findings complement clinical observations of the natural history of psychosocial changes in people with dementia, and can inform families, clinicians, and researchers on commonly observed changes and improve interventions to mitigate dementia burden.