title: Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach.
abstract: BACKGROUND
  This paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.
  
  
  METHODS
  Systematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.
  
  
  RESULTS
  Of 131 publications evaluated, 56 were assessed to be of 'high' quality, 62 of 'medium' quality and 13 of 'low' quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.
  
  
  CONCLUSIONS
  In many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.
authors.affiliation: School of Applied Social Science, University of Stirling, Stirling, FK9 4LA, UK. a.s.f.dawson@stir.ac.uk.
authors.forename: Alison
authors.initials: A
authors.lastname: Dawson
authors.affiliation: School of Applied Social Science, University of Stirling, Stirling, FK9 4LA, UK. a.m.bowes@stir.ac.uk.
authors.forename: Alison
authors.initials: A
authors.lastname: Bowes
authors.affiliation: Bournemouth University Dementia Institute (BUDI), Bournemouth University, Bournemouth, BH12, UK. fkelly@bournemouth.ac.uk.
authors.forename: Fiona
authors.initials: F
authors.lastname: Kelly
authors.affiliation: School of Applied Social Science, University of Stirling, Stirling, FK9 4LA, UK. k.d.velzke@stir.ac.uk.
authors.forename: Kari
authors.initials: K
authors.lastname: Velzke
authors.affiliation: School of Applied Social Science, University of Stirling, Stirling, FK9 4LA, UK. richard.ward1@stir.ac.uk.
authors.forename: Richard
authors.initials: R
authors.lastname: Ward
mesh_terms: D000368:Aged; D017028:Caregivers; D003704:Dementia / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D057187:Independent Living; D017063:Outcome Assessment, Health Care; D012944:Social Support