Informal care for people with dementia in Europe

Ron L. Handels; Somboon Hataiyusuk; Anders Wimo; Anders  Skoldunger; Christian Bakker; Anja  Bieber; Alfonso Ciccone; C A Defanti; A Fabbo; S Fascendini; L Frolich; C Gervès-Pinquié; Manuel Goncalves-Pereira; Kate Irving; R Koopmans; P Mecocci; P Merlo; B Michalowsky; O Peters; Y Pijnenburg; O Ribeiro; G. Selbaeck; L Schwarzkopf; H. Verbeek; Marjolein de Vugt; Bob Woods; Orazio Zanetti; B. Winblad; L Jönsson

doi:10.1016/j.tjpad.2024.100015

Informal care for people with dementia in Europe

Ron L. Handels, Somboon Hataiyusuk, Anders Wimo, Anders Skoldunger, Christian Bakker, Anja Bieber, Alfonso Ciccone, C A Defanti, A Fabbo, S Fascendini, L Frolich, C Gervès-Pinquié, Manuel Goncalves-Pereira, Kate Irving, R Koopmans, P Mecocci, P Merlo, B Michalowsky, O Peters, Y PijnenburgO Ribeiro, G. Selbaeck, L Schwarzkopf, H. Verbeek, Marjolein de Vugt, Bob Woods, Orazio Zanetti, B. Winblad, L Jönsson

School of Health Sciences

Research output: Contribution to journal › Article › 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
Journal	Journal of Prevention of Alzheimer's Disease
Volume	12
Issue number	1
DOIs	https://doi.org/10.1016/j.tjpad.2024.100015
Publication status	Published - 1 Jan 2025

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Handels, R. L., Hataiyusuk, S., Wimo, A., Skoldunger, A., Bakker, C., Bieber, A., Ciccone, A., Defanti, C. A., Fabbo, A., Fascendini, S., Frolich, L., Gervès-Pinquié, C., Goncalves-Pereira, M., Irving, K., Koopmans, R., Mecocci, P., Merlo, P., Michalowsky, B., Peters, O., ... Jönsson, L. (2025). Informal care for people with dementia in Europe. Journal of Prevention of Alzheimer's Disease, 12(1), 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.",

author = "Handels, \{Ron L.\} and Somboon Hataiyusuk and Anders Wimo and Anders Skoldunger and Christian Bakker and Anja Bieber and Alfonso Ciccone and Defanti, \{C A\} and A Fabbo and S Fascendini and L Frolich and C Gerv{\`e}s-Pinqui{\'e} and Manuel Goncalves-Pereira and Kate Irving and R Koopmans and P Mecocci and P Merlo and B Michalowsky and O Peters and Y Pijnenburg and O Ribeiro and G. Selbaeck and L Schwarzkopf and H. Verbeek and \{de Vugt\}, Marjolein and Bob Woods and Orazio Zanetti and B. Winblad and L J{\"o}nsson",

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

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Handels, RL, Hataiyusuk, S, Wimo, A, Skoldunger, A, Bakker, C, Bieber, A, Ciccone, A, Defanti, CA, Fabbo, A, Fascendini, S, Frolich, L, Gervès-Pinquié, C, Goncalves-Pereira, M, Irving, K, Koopmans, R, Mecocci, P, Merlo, P, Michalowsky, B, Peters, O, Pijnenburg, Y, Ribeiro, O, Selbaeck, G, Schwarzkopf, L, Verbeek, H, de Vugt, M, Woods, B, Zanetti, O, Winblad, B & Jönsson, L 2025, 'Informal care for people with dementia in Europe', Journal of Prevention of Alzheimer's Disease, vol. 12, no. 1, 100015. https://doi.org/10.1016/j.tjpad.2024.100015

TY - JOUR

T1 - Informal care for people with dementia in Europe

AU - Handels, Ron L.

AU - Hataiyusuk, Somboon

AU - Wimo, Anders

AU - Skoldunger, Anders

AU - Bakker, Christian

AU - Bieber, Anja

AU - Ciccone, Alfonso

AU - Defanti, C A

AU - Fabbo, A

AU - Fascendini, S

AU - Frolich, L

AU - Gervès-Pinquié, C

AU - Goncalves-Pereira, Manuel

AU - Irving, Kate

AU - Koopmans, R

AU - Mecocci, P

AU - Merlo, P

AU - Michalowsky, B

AU - Peters, O

AU - Pijnenburg, Y

AU - Ribeiro, O

AU - Selbaeck, G.

AU - Schwarzkopf, L

AU - Verbeek, H.

AU - de Vugt, Marjolein

AU - Woods, Bob

AU - Zanetti, Orazio

AU - Winblad, B.

AU - Jönsson, L

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.

U2 - 10.1016/j.tjpad.2024.100015

DO - 10.1016/j.tjpad.2024.100015

M3 - Article

SN - 2274-5807

VL - 12

JO - Journal of Prevention of Alzheimer's Disease

JF - Journal of Prevention of Alzheimer's Disease

IS - 1

M1 - 100015

ER -

Informal care for people with dementia in Europe

Abstract

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