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Aging & Mental Health Volume 24, 2020 - Issue 1
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Original Papers

A comparison of self and proxy quality of life ratings for people with dementia and their carers: a European prospective cohort study

E. O’SheaSchool of Nursing and Human Sciences, Dublin City University, Dublin, Ireland; Correspondence[email protected]
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L. HopperSchool of Nursing and Human Sciences, Dublin City University, Dublin, Ireland; View further author information
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M. MarquesCEDOC, Chronic Diseases Research Centre, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisboa, Portugal; View further author information
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M. Gonçalves-PereiraCEDOC, Chronic Diseases Research Centre, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisboa, Portugal; View further author information
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B. WoodsDementia Services Development Centre, Bangor University, Bangor, UK; View further author information
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H. JelleyDementia Services Development Centre, Bangor University, Bangor, UK; View further author information
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F. VerheySchool for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands; View further author information
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L. KerpershoekSchool for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands; View further author information
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C. WolfsSchool for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands; View further author information
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M. de VugtSchool for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands; View further author information
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A. StephanMartin Luther University Halle-Wittenberg, Halle (Saale), Germany; View further author information
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A. BieberMartin Luther University Halle-Wittenberg, Halle (Saale), Germany; View further author information
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G. MeyerMartin Luther University Halle-Wittenberg, Halle (Saale), Germany; View further author information
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A. WimoDepartment of Neurobiology, Care sciences and Society, Karolinska Institut, Stockholm, Sweden; View further author information
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M. MicheletNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; View further author information
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G. SelbaekNorwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; View further author information
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E. PortolaniAlzheimer’s Research Unit-Memory Clinic, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, ItalyView further author information
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O. ZanettiAlzheimer’s Research Unit-Memory Clinic, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, ItalyView further author information
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K. IrvingSchool of Nursing and Human Sciences, Dublin City University, Dublin, Ireland; View further author information
& the Actifcare Consortium show all
Pages 162-170 | Received 23 Feb 2018, Accepted 24 Aug 2018, Published online: 01 Nov 2018

Citations (23)

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Joost D. Wammes, Holly B. Laws, Hein P.J van Hout, Janet L. MacNeil Vroomen & Joan K. Monin. (2023) Self- reported and informal caregiver proxy-reported met needs in persons living with dementia are associated with lower health-related quality of life: a dyadic, cross-sectional study. Aging & Mental Health 0:0, pages 1-5.
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Anne-Marie Boström, Tommy Cederholm, Gerd Faxén-Irving, Erika Franzén, Helena Grönstedt, Åke Seiger, Sofia Vikström & Anders Wimo. (2022) Factors Associated with Health-Related Quality of Life in Older Persons Residing in Nursing Homes. Journal of Multidisciplinary Healthcare 15, pages 2615-2622.
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Maria J. Marques, Eva Y.L. Tan, Bob Woods, Hannah Jelley, Liselot Kerpershoek, Louise Hopper, Kate Irving, Anja Bieber, Astrid Stephan, Anders Sköldunger, Britt-Marie Sjölund, Geir Selbaek, Janne Røsvik, Orazio Zanetti, Daniel M. Portolani, João Marôco, Marjolein de Vugt, Frans Verhey & Manuel Gonçalves-Pereira. (2022) Trajectories of relationship quality in dementia: a longitudinal study in eight European countries. Aging & Mental Health 26:11, pages 2307-2315.
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Articles from other publishers (20)

Julie Ratcliffe, Kiri Lay, Matthew Crocker, Lidia Engel, Rachel Milte, Claire Hutchinson, Jyoti Khadka, David G. T. Whitehurst, Brendan Mulhern, Rosalie Viney & Richard Norman. (2023) Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study. The Patient - Patient-Centered Outcomes Research.
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Becky Dowson, Justine Schneider, Orii McDermott & Martin Orrell. (2023) Online Singing Groups for People With Dementia: Adaptation and Resilience in the Face of the COVID-19 Pandemic. Dementia, pages 147130122311792.
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Claire Hutchinson, David G. T. Whitehurst, Matthew Crocker, Kiri Lay, Lidia Engel & Julie Ratcliffe. (2023) Measuring Quality of Life in Residential Aged Care Using the EQ-5D-5L: A Cross-Sectional Study on the Impact of Cognition Level and Proxy Perspective on Interrater Agreement. Health & Social Care in the Community 2023, pages 1-11.
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Niklas Weber, Feng Xie, Thomas Kohlmann, Wiebke Mohr, Moritz Platen, Anika Rädke, Ingo Kilimann, Lidia Engel & Bernhard Michalowsky. (2023) Fluctuations of health states in dementia diseases and their impact on the assessment of health today using the EQ-5D-5L: Protocol of a mixed-methods study. Frontiers in Public Health 11.
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Melissa L. Harris-Gersten, Judith M. Davagnino, Edwin R. Alcorn & S. Nicole Hastings. (2023) Usability and Acceptability of Social Robot Pets Among Community-Dwelling Veterans Living With Dementia and Their Caregivers. American Journal of Alzheimer's Disease & Other Dementias® 38.
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Serena Sabatini, Anthony Martyr, Laura D. Gamble, Ian R. Jones, Rachel Collins, Fiona E. Matthews, Martin Knapp, Jeanette M. Thom, Catherine Henderson, Christina Victor, Claire Pentecost & Linda Clare. (2023) Are profiles of social, cultural, and economic capital related to living well with dementia? Longitudinal findings from the IDEAL programme. Social Science & Medicine 317, pages 115603.
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Irina Kinchin, Iracema Leroi, Sean P. Kennelly, Slavica Kochovska, Conor Brady, Deborah Fitzhenry, Cathy McHale, Philip Kinghorn & Joanna Coast. (2022) What does a “good life” mean for people living with dementia? A protocol for a think-aloud study informing the value of care. Frontiers in Aging Neuroscience 14.
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Hannah Hussain, Anju Keetharuth, Donna Rowen & Allan Wailoo. (2022) Convergent validity of EQ-5D with core outcomes in dementia: a systematic review. Health and Quality of Life Outcomes 20:1.
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Anju D. Keetharuth, Hannah Hussain, Donna Rowen & Allan Wailoo. (2022) Assessing the psychometric performance of EQ-5D-5L in dementia: a systematic review. Health and Quality of Life Outcomes 20:1.
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Charlotte Roos, Moudud Alam, Anna Swall, Anne‐Marie Boström & Lena Marmstål Hammar. (2021) Factors associated with perceptions of dignity and well‐being among older people living in residential care facilities in Sweden. A national cross‐sectional study. Health & Social Care in the Community 30:5.
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Claire Hutchinson, Anthea Worley, Jyoti Khadka, Rachel Milte, Jenny Cleland & Julie Ratcliffe. (2022) Do we agree or disagree? A systematic review of the application of preference-based instruments in self and proxy reporting of quality of life in older people. Social Science & Medicine 305, pages 115046.
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Linda Clare, Laura D Gamble, Anthony Martyr, Serena Sabatini, Sharon M Nelis, Catherine Quinn, Claire Pentecost, Christina Victor, Roy W Jones, Ian R Jones, Martin Knapp, Rachael Litherland, Robin G Morris, Jennifer M Rusted, Jeanette M Thom, Rachel Collins, Catherine Henderson & Fiona E Matthews. (2022) Longitudinal Trajectories of Quality of Life Among People With Mild-to-Moderate Dementia: A Latent Growth Model Approach With IDEAL Cohort Study Data. The Journals of Gerontology: Series B 77:6, pages 1037-1050.
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Catherine Henderson, Martin Knapp, Anthony Martyr, Laura D. Gamble, Sharon M. Nelis, Catherine Quinn, Claire Pentecost, Rachel Collins, Yu-Tzu Wu, Ian R. Jones, Christina R. Victor, James A. Pickett, Roy W. Jones, Fiona E. Matthews, Robin G. Morris, Jennifer Rusted, Jeanette M. Thom & Linda Clare. (2022) The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort. Journal of Alzheimer's Disease 86:1, pages 135-153.
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Samuel R. Nyman, Chloe Casey & Remco Polman. (2021) Psychometric Properties of the ICECAP-O Quality of Life Measurement Tool When Self-reported by Community-dwelling Older People With Mild and Moderate Dementia. Alzheimer Disease & Associated Disorders 35:4, pages 356-359.
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Yu-Tzu Wu, Sharon M Nelis, Catherine Quinn, Anthony Martyr, Ian R Jones, Christina R Victor, Martin Knapp, Catherine Henderson, John V Hindle, Roy W Jones, Michael D Kopelman, Robin G Morris, James A Pickett, Jennifer M Rusted, Jeanette M Thom, Rachael Litherland, Fiona E Matthews & Linda Clare. (2020) Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme. Age and Ageing 49:3, pages 446-452.
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Alys W. Griffiths, Sarah J. Smith, Adam Martin, David Meads, Rachael Kelley & Claire A. Surr. (2019) Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes. Quality of Life Research 29:2, pages 463-472.
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Giulia Grande, Davide L. Vetrano, Francesco Mazzoleni, Valeria Lovato, Mario Pata, Claudio Cricelli & Francesco Lapi. (2020) Detection and Prediction of Incident Alzheimer Dementia over a 10-Year or Longer Medical History: A Population-Based Study in Primary Care. Dementia and Geriatric Cognitive Disorders 49:4, pages 384-389.
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Gad A. Marshall, Sietske A. M. Sikkes, Rebecca E. Amariglio, Jennifer R. Gatchel, Dorene M. Rentz, Keith A. Johnson, Oliver Langford, Chung‐Kai Sun, Michael C. Donohue, Rema Raman, Paul S. Aisen, Reisa A. Sperling & Douglas R. Galasko. (2020) Instrumental activities of daily living, amyloid, and cognition in cognitively normal older adults screening for the A4 Study. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring 12:1.
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Tatjana Bošković Matić, Gordana Toncev, Aleksandar Gavrilović & Dejan Aleksić. (2019) Suffering from cerebral small vessel disease with and without metabolic syndrome. Open Medicine 14:1, pages 479-484.
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Maria J. Marques, Bob Woods, Louise Hopper, Hannah Jelley, Kate Irving, Liselot Kerpershoek, Gabriele Meyer, Anja Bieber, Astrid Stephan, Anders Sköldunger, Britt‐Marie Sjölund, Geir Selbaek, Janne Rosvik, Orazio Zanetti, Elisa Portolani, Marjolein de Vugt, Frans Verhey & Manuel Gonçalves‐Pereira. (2019) Relationship quality and sense of coherence in dementia: Results of a E uropean cohort study . International Journal of Geriatric Psychiatry 34:5, pages 745-755.
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