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

Joany MillenaarDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The NetherlandsCorrespondence[email protected]

Lara HvidstenNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway

Marjolein E. de VugtDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands

Knut EngedalNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway

Geir SelbækNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway;Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, Ottestad, Norway;Department of Nursing Science, Faculty of Medicine, University of Oslo, Oslo, Norway

Torgeir Bruun WyllerDepartment of Geriatric Medicine, Institute of Clinical Medicine, University of Oslo, Oslo, Norway;Department of Geriatric Medicine, Oslo University Hospital, Geriatric Medicine, Oslo, Norway

Aud JohannessenNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway

http://orcid.org/0000-0002-7686-7263

Per Kristian HaugenNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway

Christian BakkerFlorence Mariahoeve Center for Specialized Care in Young-Onset Dementia, Den Haag, The Netherlands;Department of Primary and Community Care, Radboud Alzheimer Center, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands

Deliane van VlietDepartment of Primary and Community Care, Radboud Alzheimer Center, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands

Raymond T.C.M. KoopmansDepartment of Primary and Community Care, Radboud Alzheimer Center, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands;Joachim and Anna Centre for Specialized Geriatric Care, Nijmegen, The Netherlands

Frans R.J. VerheyDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands

http://orcid.org/0000-0002-8307-8406

Hege KerstenNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway;Pharmaceutical Bioscience, School of Pharmacy, University of Oslo, Oslo, Norway;Old Age Psychiatry Research Network, Telemark Hospital Trust and Vestfold Hospital Trust, Tønsberg, Norway

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ABSTRACT

Background: 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.

KEYWORDS:

Acknowledgments

We would like to thank all the research assistants who assisted in collecting the data and Y. Pijnenburg for her contributions to the NeedYD study.

Disclosure statement

No potential conflict of interest was reported by the authors.

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

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

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