title: Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals.
abstract: OBJECTIVE
  To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries.
  
  
  BACKGROUND
  Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization.
  
  
  METHODS
  Cross-sectional survey in eight European countries (November 2010-January 2012).
  
  
  METHODS
  Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa).
  
  
  RESULTS
  Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain.
  
  
  CONCLUSIONS
  Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.
authors.affiliation: School of Nursing Science, Witten/Herdecke University, Germany.
authors.forename: Astrid
authors.initials: A
authors.lastname: Stephan
authors.affiliation: School CAPHRI, Maastricht University, The Netherlands.
authors.forename: Basema
authors.initials: B
authors.lastname: Afram
authors.affiliation: Department of Nursing Science, University of Turku, Finland.
authors.forename: Jaana
authors.initials: J
authors.lastname: Koskenniemi
authors.affiliation: School CAPHRI, Maastricht University, The Netherlands.
authors.forename: Hilde
authors.initials: H
authors.lastname: Verbeek
authors.affiliation: Geriatrics Department, Gérontopôle, Toulouse University Hospital, France.
authors.forename: Maria E
authors.initials: ME
authors.lastname: Soto
authors.affiliation: School CAPHRI, Maastricht University, The Netherlands.
authors.forename: Michel H C
authors.initials: MH
authors.lastname: Bleijlevens
authors.affiliation: Personal Social Services Research Unit, University of Manchester, UK.
authors.forename: Caroline
authors.initials: C
authors.lastname: Sutcliffe
authors.affiliation: Department of Nursing Science, Lund University, Sweden.
authors.forename: Connie
authors.initials: C
authors.lastname: Lethin
authors.affiliation: Nursing Department, Hospital Clínic de Barcelona, Spain.
authors.forename: Ester
authors.initials: E
authors.lastname: Risco
authors.affiliation: Department of Internal Medicine, University of Tartu, Estonia.
authors.forename: Kai
authors.initials: K
authors.lastname: Saks
authors.affiliation: School CAPHRI, Maastricht University, The Netherlands.
authors.forename: Jan P H
authors.initials: JP
authors.lastname: Hamers
authors.affiliation: School of Nursing Science, Witten/Herdecke University, Germany.
authors.forename: Gabriele
authors.initials: G
authors.lastname: Meyer
mesh_terms: D000368:Aged; D001290:Attitude; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D003704:Dementia / Q000451:nursing / Q000503:physiopathology*; D005060:Europe; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D007326:Institutionalization; D012307:Risk Factors
keywords: caregivers; decision-making; dementia; home care; institutionalization; long-term care; nursing homes