The development of the Promoting Independence in Dementia (PRIDE) intervention to enhance independence in dementia

Abstract

Lauren Yates1,*, Emese Csipke2,*, Esme Moniz-Cook3, Phuong Leung2, Holly Walton4, Georgina Charlesworth5, Aimee Spector5, Eef Hogervorst6, Gail Mountain7, Martin Orrell1 1Institute of Mental Health, University of Nottingham, Nottingham, UK; 2Division of Psychiatry, University College London, London, UK; 3Department of Psychological Health and Well-Being, Faculty of Health Sciences, School of Health and Social Work, University of Hull, Hull, UK; 4Department of Applied Health Research, University College London, London, UK; 5Department of Clinical, Educational and Health Psychology, University College London, London, UK; 6National Centre for Sports and Exercise Medicine, Loughborough University, Loughborough, UK; 7Centre for Applied Dementia Studies, University of Bradford, Bradford, UK*These authors contributed equally to this workCorrespondence: Emese CsipkeDivision of Psychiatry, University College London, 149 Tottenham Court Road, London W1T 7NF, UKTel [phone]Email [email protected]: Support after a diagnosis of dementia may facilitate better adjustment and ongoing management of symptoms. The aim of the Promoting Independence in Dementia (PRIDE) study was to develop a postdiagnostic social intervention to help people live as well and as independently as possible. The intervention facilitates engagement in evidence-based stimulating cognitive, physical and social activities.Methods: Theories to promote adjustment to a dementia diagnosis, including theories of social learning and self-efficacy, were reviewed alongside self-management and the selective optimization model, to form the basis of the intervention. Analyses of two longitudinal databases of older adults, and qualitative analyses of interviews of older people, people with dementia, and their carers about their experiences of dementia, informed the content and focus of the intervention. Consensus expert review involving stakeholders was conducted to synthesize key components. Participants were sourced from the British NHS, voluntary services, and patient and public involvement groups. A tailored manual-based intervention was developed with the aim for this to be delivered by an intervention provider.Results: Evidence-based stimulating cognitive, physical, and social activities that have been shown to benefit people were key components of the proposed PRIDE intervention. Thirty-two participants including people with dementia (n=4), carers (n=11), dementia advisers (n=14), and older people (n=3) provided feedback on the drafts of the intervention and manual. Seven topics for activities were included (eg, “making decisions” and “getting your message across”). The manual outlines delivery of the intervention over three sessions where personalized profiles and plans for up to three activities are developed, implemented, and reviewed.Conclusion: A manualized intervention was constructed based on robust methodology and found to be acceptable to participants. Consultations with stakeholders played a key role in shaping the manualized PRIDE intervention and its delivery. Unlike most social interventions for dementia, the target audience for our intervention is the people with dementia themselves.Keywords: self-management, public patient involvement, behavior change, manual, cognitive impairment

Keywords

• self-management
• public patient involvement
• behavior change
• manual
• cognitive impairment