Abstract

ObjectivesWe aimed to examine change over time in self-rated quality of life (QoL) in people with mild-to-moderate dementia and identify subgroups with distinct QoL trajectories.MethodsWe used data from people with mild-to-moderate dementia followed up at 12 and 24 months in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study (baseline n = 1,537). A latent growth model approach examined mean change over time in QoL, assessed with the QoL-AD scale, and investigated associations of baseline demographic, cognitive, and psychological covariates with the intercept and slope of QoL. We employed growth mixture modeling to identify multiple growth trajectories.ResultsOverall mean QoL scores were stable and no associations with change over time were observed. Four classes of QoL trajectories were identified: 2 with higher baseline QoL scores, labeled Stable (74.9%) and Declining (7.6%), and 2 with lower baseline QoL scores, labeled Stable Lower (13.7%) and Improving (3.8%). The Declining class had higher baseline levels of depression and loneliness, and lower levels of self-esteem and optimism, than the Stable class. The Stable Lower class was characterized by disadvantage related to social structure, poor physical health, functional disability, and low psychological well-being. The Improving class was similar to the Stable Lower class but had lower cognitive test scores.DiscussionUnderstanding individual trajectories can contribute to personalized care planning. Efforts to prevent decline in perceived QoL should primarily target psychological well-being. Efforts to improve QoL for those with poorer QoL should additionally address functional impairment, isolation, and disadvantage related to social structure.

Highlights

  • Of the 50 million people living with dementia worldwide, most live in the community

  • Enabling them to experience a good quality of life (QoL) and „live well‟ (Institute Of Medicine, 2012, p32) is important

  • In the r Improving the experience of Dementia and Enhancing Active Life (IDEAL) study of people c living with mild-to-moderate dementia and their informal caregivers in Britain (Clare, Nelis, s et al, 2014), we sought to provide a more comprehensive picture of these associations, u drawing on Lawton‟s formulation of QoL (Lawton, 1994)

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Summary

Introduction

Enabling them to experience a good quality of life (QoL) and „live well‟ (Institute Of Medicine, 2012, p32) is important. QoL is subject to multiple influences; self-ratings of QoL by people with dementia ipt have weak cross-sectional associations with numerous factors (Martyr et al, 2018). In the r Improving the experience of Dementia and Enhancing Active Life (IDEAL) study of people c living with mild-to-moderate dementia and their informal caregivers in Britain (Clare, Nelis, s et al, 2014), we sought to provide a more comprehensive picture of these associations, u drawing on Lawton‟s formulation of QoL (Lawton, 1994). Modelling based on crossan sectional data (Clare et al, 2019) demonstrated the independent association of five life domains with QoL, measured using the QoL-AD (Logsdon et al, 2000).

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