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Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study

Michel, Bleijlevens; Minna, Stolt; Astrid, Stephan; Adelaida, Zabalegui; Kai, Saks; Caroline, Sutcliffe; Lethin, Connie LU ; Maria, Soto and Sandra, Zwakhalen (2015) In Journal of Advanced Nursing 71(6). p.1378-1391
Abstract
Abstract

Aims. To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care.

Background. Country differences in the experience of burden and health-related quality of life are rarely described.

Design. Prospective cohort study.

Methods. Data on burden and health-related quality of life were collected at baseline (conducted between November 2010–April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional... (More)
Abstract

Aims. To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care.

Background. Country differences in the experience of burden and health-related quality of life are rarely described.

Design. Prospective cohort study.

Methods. Data on burden and health-related quality of life were collected at baseline (conducted between November 2010–April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home

care. Statistical analyses focused on descriptive comparisons between groups and countries.

Results. Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of

people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up.

Conclusion. Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
burden, dementia, health-related quality of life, home care-nursing, informal caregivers, institutional care, older people
in
Journal of Advanced Nursing
volume
71
issue
6
pages
1378 - 1391
publisher
Wiley-Blackwell
external identifiers
  • wos:000354394800017
  • scopus:84929317827
ISSN
0309-2402
DOI
10.1111/jan.12561
language
English
LU publication?
yes
id
7cb9a36c-04b5-4aa3-8b1b-59d0472384f8 (old id 4812417)
date added to LUP
2015-06-25 14:44:15
date last changed
2017-11-19 03:07:12
@article{7cb9a36c-04b5-4aa3-8b1b-59d0472384f8,
  abstract     = {Abstract<br/><br>
Aims. To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care.<br/><br>
Background. Country differences in the experience of burden and health-related quality of life are rarely described.<br/><br>
Design. Prospective cohort study.<br/><br>
Methods. Data on burden and health-related quality of life were collected at baseline (conducted between November 2010–April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home<br/><br>
care. Statistical analyses focused on descriptive comparisons between groups and countries.<br/><br>
Results. Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of<br/><br>
people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up.<br/><br>
Conclusion. Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being.},
  author       = {Michel, Bleijlevens and Minna, Stolt and Astrid, Stephan and Adelaida, Zabalegui and Kai, Saks and Caroline, Sutcliffe and Lethin, Connie and Maria, Soto and Sandra, Zwakhalen},
  issn         = {0309-2402},
  keyword      = {burden,dementia,health-related quality of life,home care-nursing,informal caregivers,institutional care,older people},
  language     = {eng},
  number       = {6},
  pages        = {1378--1391},
  publisher    = {Wiley-Blackwell},
  series       = {Journal of Advanced Nursing},
  title        = {Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study},
  url          = {http://dx.doi.org/10.1111/jan.12561},
  volume       = {71},
  year         = {2015},
}