Process evaluation of a New psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family)

Author:

Wyman Danielle1,Butler Laurie T1,Morgan-Trimmer Sarah2,Bright Peter1,Barber Julie3,Budgett Jessica4,Walters Kate3,Lang Iain2,Rapaport Penny4,Banks Sara4,Palomo Marina5,Orgeta Vasiliki3ORCID,Livingston Gill3,Rockwood Kenneth6,Lord Kathryn7,Manthorpe Jill8,Dow Briony9,Hoe Juanita10,Cooper Claudia4ORCID

Affiliation:

1. Anglia Ruskin University Faculty of Science and Engineering, School of Psychology and Sport Science at Anglia Ruskin University, , East Road, Cambridge CB1 1PT, UK

2. University of Exeter , The Medical School, Exeter, UK

3. University College London Division of Psychiatry, , Wing B, Floor 6 Maple House, 149 Tottenham Court Road, London, UK

4. Queen Mary University of London Wolfson Institute of Population Health Centre for Psychiatry and Mental Health, , Yvonne Carter Building, Turner Street, London E1 2AB, UK

5. Camden and Islington NHS Foundation Trust, Department of Clinical Psychology , St. Pancras Hospital, 4 St. Pancras Way, London, NW1 0PE, UK

6. Dalhousie University Division of Geriatric Medicine, Department of Medicine, School of Health Administration, , Suite 1421-5955 Veterans' Memorial Lane, Halifax, NS B3H 4R2, Canada

7. University of Bradford Centre for Applied Dementia Studies, , Richmond Road, Bradford, West Yorkshire BD7 1DP, UK

8. King's College London Social Care Workforce Research Unit, Faculty of Social Science and Public Policy, , 150 Stamford Street, London SE1 9NN, UK

9. National Ageing Research Institute Ltd , Parkville, VIC, Australia

10. Gellar Institute of Ageing and Memory, School of Medicine, University of West London , London W5 5RF, UK

Abstract

Abstract Introduction We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1 year. Methods In 2021–2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We conducted qualitative interviews with dyads and intervention facilitators, purposively selected for diverse follow-up GAS scores. We collected observational data from intervention session recordings. We thematically analysed data, then integrated qualitative and quantitative data. Results 174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed it, 18 partially completed, while 12 received no intervention. We interviewed 27/192 (14%) of dyads receiving any sessions, and 9/10 facilitators; and observed 12 sessions. 47/192 (24.5%) of carers completed the acceptability questionnaire. We identified four themes: (A) ‘Someone to talk to helps dyads feel supported’; (B) ‘NIDUS-Family helps carers change their perspective’; (C) ‘Personalisation helps people living with dementia maintain their identity’ and (D) ‘Small steps help dyads move forward’. Conclusion Key causal pathway mechanisms were: a respectful, trusting and impartial relationship with the facilitator: supporting the development of meaningful goals and support to find manageable solutions. Core implementation factors were delivery of the modules from a consistent facilitator across regular sessions. Core contextual factors influencing these mechanisms were dyadic participation and understanding of abilities.

Publisher

Oxford University Press (OUP)

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