Evaluating a model of best practice in primary care led post-diagnostic dementia care: feasibility and acceptability findings from the PriDem study
,
Rachael Hunter,
Louise Robinson,
Greta Rait,
Kate R Walters,
Marie Poole,
Jill Manthorpe,
Jane Wilcock,
Martin Knapp,
Sube Banerjee,
Derek King,
Louise Allen,
Katie Flanagan,
Alistair Burns,
Raphael Wittenberg,
Emily Evans,
Sarah Griffiths,
Sue Tucker,
M Brar,
Emily Spencer,
Martin Wiegand,
Federica D'Andrea,
Aidan O'Keeffe,
Revd Doug Lewins,
Lewis Benjamin,
Alexander James Hagan
Affiliations
Rachael Hunter
Research Department of Primary Care and Population Health and Priment CTU, University College London, London, UK
Louise Robinson
7 Faculty of Medical Sciences, Population Health Sciences Institute, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, UK
Greta Rait
The National Institute for Health Research Health Protection Research Unit in Blood Borne and Sexually Transmitted Infections at University College London in Partnership with the UK Health Security Agency, London, UK
Kate R Walters
Centre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, UK
Marie Poole
5 Newcastle University, Newcastle upon Tyne, UK
Jill Manthorpe
Jane Wilcock
1 Research Department of Population Health and Primary Care, Institute of Epidemiology & Health, Faculty of Population Health Sciences, UCL, London, UK
Martin Knapp
Sube Banerjee
Derek King
Louise Allen
Oxford Policy Management, Johannesburg, South Africa
Katie Flanagan
Marie Curie Palliative Care Research Department, University College London, London, UK
Alistair Burns
Raphael Wittenberg
Emily Evans
Department of Surgery, University of Michigan, Ann Arbor, Michigan, USA
Sarah Griffiths
1 Research Department of Population Health and Primary Care, Institute of Epidemiology & Health, Faculty of Population Health Sciences, UCL, London, UK
Sue Tucker
M Brar
7 Faculty of Medical Sciences, Population Health Sciences Institute, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, UK
Emily Spencer
1 Primary Care and Population Health, UCL, London, UK
Martin Wiegand
3 Biostatistics Unit, UCL, London, UK
Federica D'Andrea
4 University of West London, London, UK
Aidan O'Keeffe
2 Mathematical Sciences, University of Nottingham, Nottingham, UK
Revd Doug Lewins
Lewis Benjamin
1 Primary Care and Population Health, UCL, London, UK
Alexander James Hagan
7 Faculty of Medical Sciences, Population Health Sciences Institute, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, UK
Objectives To evaluate the feasibility and acceptability of a primary care-based intervention for improving post-diagnostic dementia care and support (PriDem), and implementation study procedures.Design A non-randomised, mixed methods, feasibility study.Setting Seven general practices from four primary care networks (PCNs) in the Northeast and Southeast of England.Participants We aimed to recruit 80 people with dementia (PWD) and 66 carersIntervention Clinical Dementia Leads delivered a 12-month intervention in participating PCNs, to develop care systems, build staff capacity and capability, and deliver tailored care and support to PWD and carers.Outcomes Recruitment and retention rates were measured. A mixed methods process evaluation evaluated feasibility and acceptability of the intervention and study procedures. Using electronic care records, researchers extracted service use data and undertook a dementia care plan audit, preintervention and postintervention, assessing feasibility of measuring the primary implementation outcome: adoption of personalised care planning by participating general practices. Participants completed quality of life, and service use measures at baseline, 4 and 9 months.Results 60 PWD (75% of recruitment target) and 51 carers (77% of recruitment target) were recruited from seven general practices across four PCNs. Retention rate at 9 months was 70.0% of PWD and 76.5% of carers. The recruitment approach showed potential for including under-represented groups within dementia. Despite implementation challenges, the intervention was feasible and acceptable, and showed early signs of sustainability. Study procedures were feasible and accessible, although researcher capacity was crucial. Participants needed time and support to engage with the study. Care plan audit procedures were feasible and acceptable.Conclusions The PriDem model is an acceptable and feasible intervention. A definitive study is warranted to fully inform dementia care policy and personalised dementia care planning guidance. Successful strategies to support inclusion of PWD and their carers in future research were developed.Trial registration number ISRCTN11677384.
