Personal dignity in people with early-stage dementia: A longitudinal study

Abstract

Background A psychosocial problem faced by people with early-stage dementia (PwESD) is the perception of threats to personal dignity. Insights into its dynamics are important for understanding how it changes as dementia advances and to develop suitable interventions. However, longitudinal studies on this change in PwESD are lacking. Aims To determine how perceptions of dignity and selected clinical and social factors change over 1 year in home-dwelling PwESD and the predictors associated with changes in perceptions of dignity over 1 year. Research design and methods A longitudinal study was conducted. The sample included 258 home-dwelling Czech PwESD. Data were collected using the Patient Dignity Inventory (PDI-CZ), Mini-Mental State Examination, Bristol Activities of Daily Living Scale, Geriatric Depression Scale and items related to social involvement. Questionnaires were completed by the PwESD at baseline and after 1 year. Ethical considerations The study was approved by the ethics committee and informed consent was provided by the participants. Results People with Early-Stage Dementia rated the threat to dignity as mild and the ratings did not change significantly after 1 year. Cognitive function, self-sufficiency, vision, and hearing worsened, and more PwESD lived with others rather than with a partner after 1 year. Worsened depression was the only predictor of change in perceived personal dignity after 1 year, both overall and in each of the PDI-CZ domains. Predictors of self-sufficiency and pain affected only some PDI-CZ domains. Conclusions Perceptions of threat to dignity were mild in PwESD after 1 year, although worsened clinical factors represented a potential threat to dignity. Our findings lead us to hypothesise that perceived threats to personal dignity are not directly influenced by health condition, but rather by the social context.