Primary Health Care Research and Development


Methodological problems in dementia research in primary care: a case study of a randomized controlled trial

Jane Wilcock a1c1, Michelle Bryans a2, Stephen Turner a3, Ronan O'Carroll a4, John Keady a5, Enid Levin a6, Steve Iliffe a7 and Murna Downs a8
a1 Department of Primary Care and Population Sciences, RFUCLMS, London, USA
a2 Department of Clinical and Counselling Psychology, NHS Lanarkshire, East Kilbride, UK
a3 Dental Health Services Research Unit, Dundee, Scotland, UK
a4 Department of Psychology, University of Stirling, Stirling, Scotland, UK
a5 Northumbria University/for Dementia, School of Health, Community and Education Studies, Northumbria University, Benton, Newcastle-upon-Tyne, UK
a6 Social Care Institute for Excellence, London, UK
a7 Department of Primary Care and Population Sciences, National Co-ordinating Centre for Neurodegenerative Diseases and Dementias Research Networks, RFUCLMS, London, UK
a8 Bradford Dementia Group, School of Health Studies, University of Bradford, Bradford, UK

Article author query
wilcock j   [Google Scholar] 
bryans m   [Google Scholar] 
turner s   [Google Scholar] 
o'carroll r   [Google Scholar] 
keady j   [Google Scholar] 
levin e   [Google Scholar] 
iliffe s   [Google Scholar] 
downs m   [Google Scholar] 


The emerging UK national research network in neurodegenerative diseases and dementias aims to promote large-scale community-based studies of therapeutic interventions, based in primary care. However, trials in primary care settings can be problematic, a common difficulty being the recruitment of a large enough sample. The article discusses recruitment issues in a multi-centre randomized controlled trial of differing educational approaches to improving dementia care in general practice. Sample size calculations based on community studies of prevalence may be misleading in intervention trials which may recruit practices with atypical demography. Recruitment rates for practitioners in this study were lower than expected. Professionals excluded themselves from the study mainly due to pressures of time and staff shortages, and we detected both ambivalent attitudes to primary care research and a perception that research into dementia care was not a high priority. Evaluation of the quality of care may be perceived as criticism of clinical practice, at a time when general practice is undergoing major administrative and contractual changes. Variations in Research Ethics Committee conditions for approval led to different methods of recruitment of patients and carers into the study, a factor which may have contributed to disparate levels of recruitment across study sites. Patient and carer levels of recruitment were lower than expected and were affected partly by carers' time pressures and other family commitments, but largely by problems in identifying patients and carers in the practices. The development of research potential in primary care is at an early stage and studies reliant on patient recruitment in general practice must allow for multiple obstacles to enrollment. This is particularly relevant for studies of dementia care, where the prevalence of dementia in a demographically average population is low and the incidence very low, compared with other disabilities. Professionals may give dementia low priority in allocating practice time for research projects, and strategies to address this problem are needed.

(Received January 2006)
(Accepted August 2006)

Key Words: dementia; primary care; recruitment; research methods.

c1 Address for correspondence: Jane Wilcock, Department of Primary Care and Population Sciences, RFUCLMS, Rowland Hill St., London NW3 2PF, UK. Email: