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 Pijnenburg; Óscar 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

doi:10.1016/j.tjpad.2024.100015

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 Pijnenburg

Óscar 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

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-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 language	English
Article number	100015
Pages (from-to)	100015
Number of pages	11
Journal	JPAD-Journal of prevention of alzheimers disease
Volume	12
Issue number	1
DOIs	https://doi.org/10.1016/j.tjpad.2024.100015
Publication status	Published - 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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10.1016/j.tjpad.2024.100015Licence: CC BY

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Handels, R., Hataiyusuk, S., Wimo, A., Sköldunger, A., Bakker, C., Bieber, A., Ciccone, A., Defanti, C. A., Fabbo, A., Fascendini, S., Frölich, L., Gervès-Pinquié, C., Gonçalves-Pereira, M., Irving, K., Koopmans, R., Mecocci, P., Merlo, P., Michalowsky, B., Peters, O., ... RightTimePlaceCare Consortium (2025). Informal care for people with dementia in Europe. JPAD-Journal of prevention of alzheimers disease, 12(1), 100015. Article 100015. https://doi.org/10.1016/j.tjpad.2024.100015

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title = "Informal care for people with dementia in Europe",

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.",

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",

author = "Ron Handels and Somboon Hataiyusuk and Anders Wimo and Anders Sk{\"o}ldunger and Christian Bakker and Anja Bieber and Alfonso Ciccone and Defanti, \{Carlo Alberto\} and Andrea Fabbo and Sara Fascendini and Lutz Fr{\"o}lich and Chlo{\'e} Gerv{\`e}s-Pinqui{\'e} and Manuel Gon{\c c}alves-Pereira and Kate Irving and Raymond Koopmans and Patrizia Mecocci and Paola Merlo and Bernhard Michalowsky and Oliver Peters and Yolande Pijnenburg and {\'O}scar Ribeiro and Geir Salbaek and Larissa Schwarzkopf and Hilde Verbeek and \{de Vugt\}, Marjolein and Bob Woods and Orazio Zanetti and Bengt Winblad and Linus J{\"o}nsson and \{ActifCare Consortium\} and \{ICTUS/DSA group\} and \{PLASA/DSA group\} and \{RECAGE consortium\} and \{RightTimePlaceCare Consortium\}",

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doi = "10.1016/j.tjpad.2024.100015",

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Handels, R, Hataiyusuk, S, Wimo, A, Sköldunger, A, Bakker, C, Bieber, A, Ciccone, A, Defanti, CA, Fabbo, A, Fascendini, S, Frölich, L, Gervès-Pinquié, C, Gonçalves-Pereira, M, Irving, K, Koopmans, R, Mecocci, P, Merlo, P, Michalowsky, B, Peters, O, Pijnenburg, Y, Ribeiro, Ó, Salbaek, G, Schwarzkopf, L, Verbeek, H , de Vugt, M, Woods, B, Zanetti, O, Winblad, B, Jönsson, L, ActifCare Consortium, ICTUS/DSA group, PLASA/DSA group, RECAGE consortium & RightTimePlaceCare Consortium 2025, 'Informal care for people with dementia in Europe', JPAD-Journal of prevention of alzheimers disease, vol. 12, no. 1, 100015, pp. 100015. https://doi.org/10.1016/j.tjpad.2024.100015

TY - JOUR

T1 - Informal care for people with dementia in Europe

AU - Handels, Ron

AU - Hataiyusuk, Somboon

AU - Wimo, Anders

AU - Sköldunger, Anders

AU - Bakker, Christian

AU - Bieber, Anja

AU - Ciccone, Alfonso

AU - Defanti, Carlo Alberto

AU - Fabbo, Andrea

AU - Fascendini, Sara

AU - Frölich, Lutz

AU - Gervès-Pinquié, Chloé

AU - Gonçalves-Pereira, Manuel

AU - Irving, Kate

AU - Koopmans, Raymond

AU - Mecocci, Patrizia

AU - Merlo, Paola

AU - Michalowsky, Bernhard

AU - Peters, Oliver

AU - Pijnenburg, Yolande

AU - Ribeiro, Óscar

AU - Salbaek, Geir

AU - Schwarzkopf, Larissa

AU - Verbeek, Hilde

AU - de Vugt, Marjolein

AU - Woods, Bob

AU - Zanetti, Orazio

AU - Winblad, Bengt

AU - Jönsson, Linus

AU - ActifCare Consortium

AU - ICTUS/DSA group

AU - PLASA/DSA group

AU - RECAGE consortium

AU - RightTimePlaceCare Consortium

PY - 2025/1/1

Y1 - 2025/1/1

N2 - 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.

AB - 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.

KW - Dementia

KW - costs

KW - health-economic evaluation

KW - informal care

KW - resource use

KW - Humans

KW - Dementia/epidemiology

KW - Europe/epidemiology

KW - Female

KW - Male

KW - Activities of Daily Living

KW - Aged

KW - Caregivers

KW - Aged, 80 and over

KW - Cognitive Dysfunction

KW - Independent Living

KW - Severity of Illness Index

KW - Patient Care

U2 - 10.1016/j.tjpad.2024.100015

DO - 10.1016/j.tjpad.2024.100015

M3 - Article

SN - 2274-5807

VL - 12

SP - 100015

JO - JPAD-Journal of prevention of alzheimers disease

JF - JPAD-Journal of prevention of alzheimers disease

IS - 1

M1 - 100015

ER -

Informal care for people with dementia in Europe

Abstract

Keywords

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