Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study

Research output: Contribution to journalArticle


Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers’ negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers’ negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.


  • Connie Lethin
  • Helena Leino-Kilpi
  • Michel H.C. Bleijlevens
  • Astrid Stephan
  • Maria S. Martin
  • Karin Nilsson
  • Christer Nilsson
  • Adelaida Zabalegui
  • Staffan Karlsson
External organisations
  • University of Turku
  • Maastricht University
  • Witten/Herdecke University
  • Hospital Clínic of Barcelona
  • Martin-Luther-Universität Halle-Wittenberg
  • Skåne University Hospital
  • Halmstad University
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Gerontology, specializing in Medical and Health Sciences


  • care provision, caregiver burden, dementia, home care, quality of care
Original languageEnglish
Pages (from-to)640-660
Number of pages21
Issue number3
Publication statusPublished - 2020
Publication categoryResearch

Related projects

Gabriella Meyer, Ingalill Rahm Hallberg, Jan Hamers, David J. Challis, Helena Leino-Kilpi, Saks Kai, Zabalegui Adelaida, Maria E Soto-Martin & Connie Lethin


Project: ResearchInternational collaboration

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