Informal care for people with dementia in Europe

Ron Handels, Somboon Hataiyusuk, Anders Wimo, Anders Sköldunger, Christian Bakker, Anja Bieber, Alfonso Ciccone, Carlo Alberto Defanti, Andrea Fabbo, Sara Fascendini, Lutz Frölich, Chloé Gervès-Pinquié, Manuel Gonçalves-Pereira, Kate Irving, Raymond Koopmans, Patrizia Mecocci, Paola Merlo, Bernhard Michalowsky, Oliver Peters, Yolande PijnenburgÓscar Ribeiro, Geir Salbaek, Larissa Schwarzkopf, Hilde Verbeek, Marjolein de Vugt, Bob Woods, Orazio Zanetti, Bengt Winblad, Linus Jönsson, ActifCare Consortium, ICTUS/DSA group, PLASA/DSA group, RECAGE consortium, RightTimePlaceCare Consortium

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

INTRODUCTION: Informal care estimates for use in health-economic models are lacking. We aimed to estimate the association between informal care time and dementia symptoms across Europe. METHODS: A secondary analysis was performed on 13,529 observations in 5,369 persons from 9 European pooled cohort or trial studies in community-dwelling persons with dementia. A mixed regression model was fitted to time spent on instrumental or basic activities of daily living using disease severity and demographic characteristics. RESULTS: Daily informal care time was 0.5 hours higher in moderate compared to mild and 1.3h higher in severe compared to mild cognitive impairment. Likewise, this was 1.2h and 2.7h for functional disability and 0.3h and 0.6h for behavioral symptoms in the same directions. DISCUSSION: Estimates can be used in both single- and multi-domain health-economic models for dementia in European settings.
Original languageEnglish
Article number100015
Pages (from-to)100015
Number of pages11
JournalJPAD-Journal of prevention of alzheimers disease
Volume12
Issue number1
DOIs
Publication statusPublished - 1 Jan 2025

Keywords

  • Dementia
  • costs
  • health-economic evaluation
  • informal care
  • resource use
  • Humans
  • Dementia/epidemiology
  • Europe/epidemiology
  • Female
  • Male
  • Activities of Daily Living
  • Aged
  • Caregivers
  • Aged, 80 and over
  • Cognitive Dysfunction
  • Independent Living
  • Severity of Illness Index
  • Patient Care

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