title: Culture, consent, costs and care homes: enabling older people with dementia to participate in research.
abstract: OBJECTIVE
  To describe factors that support and inhibit recruitment and participation of people with dementia living in care homes.
  
  
  METHODS
  This article focuses on the methods used to recruit people with dementia to a longitudinal study that employed a mixed-method design to track events and care that older people with dementia experienced over two years in six care homes. A staged approach to recruitment was adopted involving separate meetings with staff, residents and relatives. Individual consent was secured with residents with dementia who could consent in the moment and for those without capacity, through mail and follow-up telephone contact with consultees. Data were collected on the frequency of meetings, issues raised by staff, consultees and people with dementia as well as the overall time taken to complete recruitment.
  
  
  RESULTS
  Over five months, 133 older people with dementia were recruited (62% of sampling frame). The recruitment process was supported or hindered by the number of individuals and organisations that needed to be consulted, the care home culture, staff's understanding of how people with dementia can be involved in research, and how they interpreted their role as mediators, protectors and gatekeepers.
  
  
  CONCLUSIONS
  Care homes are isolated communities of care. To achieve the research objectives, researchers in the initial stages need to consider the philosophical underpinnings of individual care homes, and the politics of hierarchy both within the care home and between it, and health professionals. There is a need to develop credible infrastructures of support that enable people with dementia to participate in research.
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK. c.goodman@herts.ac.uk
authors.forename: Claire
authors.initials: C
authors.lastname: Goodman
authors.forename: Natasha L
authors.initials: NL
authors.lastname: Baron
authors.forename: Ina
authors.initials: I
authors.lastname: Machen
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Stevenson
authors.forename: Catherine
authors.initials: C
authors.lastname: Evans
authors.forename: Sue L
authors.initials: SL
authors.lastname: Davies
authors.forename: Steve
authors.initials: S
authors.lastname: Iliffe
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003469:Culture; D003704:Dementia / Q000175:diagnosis / Q000523:psychology; D005260:Female; D006302:Health Services Research / Q000191:economics* / Q000379:methods; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000331:legislation & jurisprudence / Q000523:psychology; D008131:London; D008137:Longitudinal Studies; D008297:Male; D016743:Mental Competency / Q000331:legislation & jurisprudence / Q000523:psychology; D009735:Nursing Homes / Q000458:organization & administration*; D015279:Organizational Culture; D018579:Patient Selection / Q000941:ethics*; D011446:Prospective Studies; D012107:Research Design; D035842:Research Subjects / Q000523:psychology