Promoting independence in dementia: protocol for a feasibility trial of the PRIDE intervention for living well with dementia

Csipke, Emese; Yates, Lauren; Cook, Esme Moniz; Leung, Phuong; Charlesworth, Georgina; Walton, Holly; Birt, Linda; Orrell, Martin

Abstract

INTRODUCTION In the UK over 800,000 older people have dementia, which can lead to social exclusion, loss of identity and independence due to deterioration in cognition, activities of daily living, the double stigma of age and dementia, and the reduced capacity for social participation. 1 The EU Joint Programme – Neurodegenerative Disease Research (JPND) has highlighted the need for psychosocial interventions promoting social inclusion, dignity, and the positive contributions to society that people with dementia can make. 2 People with early stage dementia are generally satisfied with their lives and feel their quality of life is " good " but can, following a dementia-diagnosis experience stigma, ABSTRACT Background: Dementia can lead to social exclusion, loss of identity and independence, due to deterioration in cognition and activities of daily living. The aim of the study is to investigate the feasibility of the Promoting Independence in Dementia (PRIDE) intervention, designed to facilitate independence in people with mild dementia. Methods: This is a mixed-methods feasibility trial of the PRIDE, in preparation for a future randomised controlled trial. Up to 50 people with dementia will be recruited. Demetia advisors will deliver the three session intervention. Quantitative outcomes will be taken at baseline and up to three months post baseline. Fidelity checklists will assess fidelity to the intervention. Qualitative implementation data will be gathered in a series of post-intervention semi-structured interviews with staff and participants. This will include data to examine participant experiences of and engagement with the intervention, and other aspects of delivery such as recruitment of DAWs, fidelity and experiences of receiving and delivering the intervention. This study aims to establish and field test the PRIDE intervention; determine the recruitment rate of sites, providers and participants; assess fidelity in delivery of the intervention and engagement with people with dementia; assess the feasibility and acceptability of outcome measure data and assess the acceptability of the intervention by stakeholders. Conclusions: There has been increased need for non-pharmacological interventions for mild dementia. The results of this feasibility study will allow us to plan for a definitive RCT of a three session dementia advisor led intervention for mild dementia.

Citation

Csipke, E., Yates, L., Cook, E. M., Leung, P., Charlesworth, G., Walton, H., …Orrell, M. (2018). Promoting independence in dementia: protocol for a feasibility trial of the PRIDE intervention for living well with dementia. International Journal of Clinical Trials, 5(4), 177-185. https://doi.org/10.18203/2349-3259.ijct20184399

• Journal Article Type: Article
• Acceptance Date: Oct 4, 2018
• Publication Date: Oct 29, 2018
• Deposit Date: Oct 9, 2019
• Publicly Available Date: Oct 29, 2019
• Journal: International journal of clinical trials
• Print ISSN: 2349-3240
• Electronic ISSN: 2349-3259
• Publisher: Medip Academy
• Peer Reviewed: Peer Reviewed
• Volume: 5
• Issue: 4
• Pages: 177-185
• DOI: https://doi.org/10.18203/2349-3259.ijct20184399
• Keywords: Dementia; Independence; Self-management; Decision-making; Agency; Dementia advice worker; Post-diagnostic support
• Public URL: https://hull-repository.worktribe.com/output/1148306
• Publisher URL: https://www.ijclinicaltrials.com/index.php/ijct/article/view/286
• Related Public URLs: https://ueaeprints.uea.ac.uk/68568/
• Contract Date: Oct 9, 2019