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. 2025 Jan;12(1):100015.
doi: 10.1016/j.tjpad.2024.100015. Epub 2025 Jan 1.

Informal care for people with dementia in Europe

Ron Handels  1 , Somboon Hataiyusuk  2 , Anders Wimo  3 , Anders Sköldunger  3 , Christian Bakker  4 , Anja Bieber  5 , Alfonso Ciccone  6 , Carlo Alberto Defanti  7 , Andrea Fabbo  7 , Sara Fascendini  8 , Lutz Frölich  9 , Chloé Gervès-Pinquié  10 , Manuel Gonçalves-Pereira  11 , Kate Irving  12 , Raymond Koopmans  13 , Patrizia Mecocci  14 , Paola Merlo  15 , Bernhard Michalowsky  16 , Oliver Peters  17 , Yolande Pijnenburg  18 , Óscar Ribeiro  19 , Geir Salbaek  20 , Larissa Schwarzkopf  21 , Hilde Verbeek  22 , Marjolein de Vugt  23 , Bob Woods  24 , Orazio Zanetti  25 , Bengt Winblad  3 , Linus Jönsson  3 ; Actifcare consortium, ICTUS/DSA group, PLASA/DSA group, RECAGE consortium, RightTimePlaceCare consortium
Affiliations

Informal care for people with dementia in Europe

Ron Handels et al. J Prev Alzheimers Dis. 2025 Jan.

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.

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Conflict of interest statement

Declaration of competing interest AS No conflict of interest. BW – no conflict of interest. CB received outside this study research grants from ZonMw, Alzheimer Nederland/Dutch Alzheimer Society and Gieskes Strijbis fund. He is board member of the Dutch Young-onset Dementia Knowledge Center and member of the IPA YOD shared interest forum and member INTERDEM and its YOD Taskforce (all unpaid). CGP: No conflict of interest (IQVIA did not give any authorization or funding for this work – as shared data set was not its property and as it was used for research CGP led before integrating IQVIA). GS have participated, outside this study, at advisory boards for Eisai and Roche, regarding monoclonal antibody drugs for the treatment of Alzheimer's disease. LF – received research grants unrelated to this work from Hoffmann-LaRoche. Received case honoraria for clinical trials paid to the institution from Axon Neuroscience, Anavex, Alector, Boehringer Ingelheim, Eisai, Hummingbird, NovoNordisk, Noselab; Consulting fees unrelated to this work from Biogen, BioVie, Eisai, Eli Lilly, FOMF, Araclon/Grifols, Janssen Cilag, Medical Tribune, Medfora, Neurimmune, Noselab, NovoNordisk, Roche, TauRX, Schwabe, StreamUp; Honoraria for Clinical study committees from Avanir/Otsuka, PharmatrophiX, Charité Berlin, Neuroscios, Vivoryon. LJ received research grants unrelated to this work from Vinnova, Innovative Health Initiative, Forte and Novo Nordisk A/S. Consulting fees unrelated to this work from H. Lundbeck A/S, Janssen, Eli Lilly Inc, and license fees for the RUD instrument. LS: has no competing interest related to the topic of this paper. OR: No potential conflict of interest to declare. RH received outside this study consulting fees in the past 36 months from Lilly Nederland and from the Institute for Medical Technology Assessment (paid to institution). RK received outside this study research grants from ZonMw, Dutch Alzheimer Society and Gieskes Strijbis fund. He is board member of the International Psychogeriatric Association, member of the IPA YOD shared interest forum and member INTERDEM and its YOD Taskforce and taskforce palliative care (all unpaid). SH – no conflict of interest. YP has no conflict of interest.

Figures

Figure 1:
Figure 1
Selection of participants and observations from all pooled studies.
See this image and copyright information in PMC

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