Advanced

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.

Stephan, Astrid; Afram, Basema; Koskenniemi, Jaana; Verbeek, Hilde; Soto, Maria; Bleijlevens, Michel; Sutcliffe, Caroline; Lethin, Connie LU ; Risco, Ester and Saks, Kai, et al. (2015) In Journal of Advanced Nursing 71(6). p.1392-1404
Abstract
AIMS: 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.

DESIGN: 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... (More)
AIMS: 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.

DESIGN: 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.

CONCLUSION: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. (Less)
Please use this url to cite or link to this publication:
author
, et al. (More)
(Less)
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
caregivers, decision-making, dementia, home care, institutionalization, long-term care, nursing homes
in
Journal of Advanced Nursing
volume
71
issue
6
pages
1392 - 1404
publisher
Wiley-Blackwell
external identifiers
  • wos:000354394800018
  • other:doi: 10.1111/jan.12493
  • scopus:84929516822
ISSN
0309-2402
DOI
10.1111/jan.12493
language
English
LU publication?
yes
id
d36c4567-939b-4eeb-90cf-8839529d3d79 (old id 4732765)
date added to LUP
2015-04-13 09:59:25
date last changed
2017-11-19 03:08:03
@article{d36c4567-939b-4eeb-90cf-8839529d3d79,
  abstract     = {AIMS: 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.<br/><br>
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.<br/><br>
DESIGN: Cross-sectional survey in eight European countries (November 2010-January 2012).<br/><br>
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).<br/><br>
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.<br/><br>
CONCLUSION: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.},
  author       = {Stephan, Astrid and Afram, Basema and Koskenniemi, Jaana and Verbeek, Hilde and Soto, Maria and Bleijlevens, Michel and Sutcliffe, Caroline and Lethin, Connie and Risco, Ester and Saks, Kai and Hamers, Jan},
  issn         = {0309-2402},
  keyword      = {caregivers,decision-making,dementia,home care,institutionalization,long-term care,nursing homes},
  language     = {eng},
  number       = {6},
  pages        = {1392--1404},
  publisher    = {Wiley-Blackwell},
  series       = {Journal of Advanced Nursing},
  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.},
  url          = {http://dx.doi.org/10.1111/jan.12493},
  volume       = {71},
  year         = {2015},
}