The relationship between perceived functional difficulties and the ability to live well with mild-to-moderate dementia: Findings from the IDEAL programme.

Anthony Martyr,Catherine Quinn,Sharon M. Nelis,Robin G. Morris,Jennifer M. Rusted,Linda Clare

doi:10.1002/gps.5128

Abstract

ObjectivesThe objectives of the study are to investigate how different levels of functional ability relate to quality of life, well‐being, and satisfaction with life, conceptualised as reflecting capability to “live well” in people with dementia.Methods/designParticipants were 1496 people with mild‐to‐moderate dementia and 1188 informants who completed baseline assessments in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Total self‐rated and informant‐rated scores on the Functional Activities Questionnaire were split into six ability levels to monitor how poorer functioning impacts the ability to live well. We also investigated the potential influence of sociodemographic and diagnostic variables, depression, cognition, and carer stress.ResultsMultivariate multiple regression models found that people with dementia who had the greatest functional impairment according to self‐ratings and informant ratings had poorer living well scores than those with the least functional impairment. Sociodemographic and diagnostic factors and cognition had little impact on effect sizes. For self‐ratings, depression attenuated the relationship between functional ability and living well, whereas carer stress attenuated informant ratings.ConclusionsPeople with dementia with the least functional impairments had greater capability to live well than those with the most functional impairment. Even subtle perceived difficulties in functional ability had a detrimental effect on the ability of people with dementia to live well. Depression in people with dementia and carer stress in informants influenced these associations, and therefore, these factors should be routinely included in future research studies and clinical assessments.

Highlights

Dementia refers to a group of progressive brain disorders associated with largely generalised mental functioning difficulties, including memory and other aspects of cognition, behavioural disturbances, and reduced activities of daily living (ADL).[1,2] Impairment in ADL is diagnostically central to dementia.[3,4] There is a hierarchical sequence of decline in ADL that distinguishes between basic ADL and instrumental ADL.[5]
Perceived difficulties in instrumental ADL had a detrimental effect on the ability of people with dementia to live well even at low levels of functional impairment
The study found that standardising quality of life (QoL), satisfaction with life, and well‐being scores resulted in effect sizes for each that were equivalent between the three measures

Summary

Introduction

Dementia refers to a group of progressive brain disorders associated with largely generalised mental functioning difficulties, including memory and other aspects of cognition, behavioural disturbances, and reduced activities of daily living (ADL).[1,2] Impairment in ADL is diagnostically central to dementia.[3,4] There is a hierarchical sequence of decline in ADL that distinguishes between basic ADL and instrumental ADL.[5]. Recent dementia policy has prioritised enabling people to “live well” with dementia by improving health care and the quality of support offered to people with dementia.[17,18]

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