Ethics approval and consent to participate
The IDEAL study received ethical approval from the Wales 5 Research Ethics Committee (reference: 13/WA/0405) and the Ethics Committee of the School of Psychology, Bangor University (reference: 2014-11684) and is registered with the UK CRN (registration number: 16593). Written informed consent at baseline was provided by people with dementia themselves and was one of the inclusion criteria of the IDEAL study.
The PROTECT study received full ethical approval from the London Bridge NHS Research Ethics Committee and Health Research Authority (Ref: 13/LO/1578). Ethical approval for the data analyses was sought through the ethics committee at the University of Exeter, School of Psychology (Application ID: eCLESPsy000603 v1.0). Full written consent was obtained for all participants on registration for the PROTECT study, including consent for re-contact. Participants enrolled through the PROTECT study website, downloaded the study information sheet, and provided consent online.
Consent for publication
Availability of data and materials
IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: http://reshare.ukdataservice.ac.uk/854293/.
PROTECT data are available to investigators outside the PROTECT team after request and approval by the PROTECT Steering Committee.
The authors declare that they have no competing interests.
The IDEAL (Improving the experience of Dementia and Enhancing Active Life: Living well with dementia) study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: Living well with dementia’ (Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F. Matthews, R.G. Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom). ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J.M. Rusted. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged.
Serena Sabatini was supported by the University of Exeter College of Life and Environmental Sciences (School of Psychology); University of Exeter College of Medicine and Health; and the National Health and Medical Research Council Centre for Research Excellence in Cognitive Health [#1100579 to Kaarin Anstey].
Obioha Ukoumunne is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration SouthWest Peninsula (PenARC).
This paper represents independent research in part-funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London.
The funding bodies did not contribute in the design of the current study, data collection, analysis, interpretation of data, or in writing the manuscript.
SS served as principal investigator of the research, designed the study, conducted data analyses, and took the lead in writing the manuscript.
LC conceived and designed the IDEAL programme and contributed to the design and conduct of the current analyses and writing the manuscript.
AC, HB, and CB contributed to data collection and design of the PROTECT study, and provided feedback on the draft of the manuscript.
AM, CQ, JR, and CB are co-investigators in the IDEAL programme and contributed to the design and conduct of the current study and writing the manuscript.
OU contributed to data analyses and writing the manuscript.
The remaining co-authors provided feedback on the draft of the manuscript. The authors have read and approved the manuscript.
We would like to thank Laura Gamble for statistical advice.