Determinants of quality of life in young onset dementia – results from a European multicenter assessment

Raymond T.C.M Koopmans,Geir Selbæk,Deliane Van Vliet,Per Kristian Haugen,Joany Millenaar,Aud Johannessen,Hege Kersten,Knut Engedal,Marjolein E De Vugt,Torgeir Bruun Wyller,Christian Bakker,Frans R.J Verhey,Lara Hvidsten

doi:10.1080/13607863.2016.1232369

Abstract

ABSTRACTBackground: Promoting adaptation, improving well-being and maintaining an optimal quality of life (QOL) is an important aspect in dementia care. The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer's disease (AD) and frontotemporal dementia (FTD).Methods: In total 135 persons with AD and 58 persons with FTD were included from two prospective cohort studies. QOL was assessed with the proxy reported quality of life in Alzheimer's disease questionnaire (QoL-AD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Differences between QOL domains in people with AD and FTD were calculated using Mann-Whitney U tests.Results: Lower QOL was associated with more depressive symptoms, lower disease awareness, and a higher amount of needs, both met and unmet. People with AD scored lower on the memory and higher on the friends' subscale. No differences were found for the other items.Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL.

Highlights

Dementia is a syndrome caused by a number of neurodegenerative disorders affecting cognitive abilities such as memory and behavior, resulting in progressive loss of independence in daily activities and the ability to participate in social activities (World Health Organisation, 2012)
When dementia starts before the age of 65, it is commonly referred to as young onset dementia (YOD)
Of the 248 individuals with YOD, 169 had Alzheimer’s disease (AD) and 79 frontotemporal dementia (FTD).From the total study population, 193 completed all assessments that were necessary for the regression analysis

Summary

Introduction

Dementia is a syndrome caused by a number of neurodegenerative disorders affecting cognitive abilities such as memory and behavior, resulting in progressive loss of independence in daily activities and the ability to participate in social activities (World Health Organisation, 2012). Frontotemporal dementia (FTD) accounts for a larger proportion of the cases in YOD compared to LOD (Harvey et al, 2003). The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer’s disease (AD) and frontotemporal dementia (FTD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL

Objectives

Methods

Results