Informal care for people with dementia in Europe - 02/01/25

Doi : 10.1016/j.tjpad.2024.100015

Ron Handels ^a,^b,^⁎ , Somboon Hataiyusuk ^a,^c, Anders Wimo ^b, Anders Sköldunger ^b, Christian Bakker ^d,^e,^f, Anja Bieber ^g, Alfonso Ciccone ^h, Carlo Alberto Defanti ⁱ, Andrea Fabbo ⁱ, Sara Fascendini ^j, Lutz Frölich ^k, Chloé Gervès-Pinquié ^l, Manuel Gonçalves-Pereira ^m, Kate Irving ⁿ, Raymond Koopmans ^d,^e,^o, Patrizia Mecocci ^b,^p, Paola Merlo ^q, Bernhard Michalowsky ^r, Oliver Peters ^s, Yolande Pijnenburg ^t,^u, Óscar Ribeiro ^v,^w, Geir Salbaek ^x,^y,^z, Larissa Schwarzkopf ^aa,^ab, Hilde Verbeek ^ac, Marjolein de Vugt ^a, Bob Woods ^ad, Orazio Zanetti ^ae, Bengt Winblad ^b, Linus Jönsson ^b
Actifcare consortium, ICTUS/DSA group, PLASA/DSA group, RECAGE consortium, RightTimePlaceCare consortium
^a Alzheimer Centre Limburg, Faculty of Health Medicine and Life Sciences, Mental Health and Neuroscience Research Institute, Department of Psychiatry and Neuropsychology, Maastricht University, Universiteitssingel 40, 6200 MD, Maastricht, The Netherlands
^b Division of Neurogeriatrics, Department of Neurobiology Care Sciences and Society; Karolinska Institutet; Sweden; BioClinicum J9:20, Akademiska stråket, 171 64 Solna, Sweden
^c Department of Psychiatry, Faculty of Medicine Siriraj Hospital, Mahidol University, 2 Wang Lang Rd, 10700 Bangkok, Thailand
^d Department of Primary and Community Care, Radboud university medical center, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands
^e Radboudumc Alzheimer Center, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, the Netherlands
^f Groenhuysen, Center for Geriatric Care, Bovendonk 29, 4707 ZH Roosendaal, the Netherlands
^g Institute of Health and Nursing Sciences, Martin Luther University Halle-Wittenberg, 06108 Halle (Saale), Germany
^h Department of Neurology with Neurosurgical Activity “Carlo Poma” Hospital, ASST di Mantova, Str. Lago Paiolo, 10, 46100 Mantova, MN, Italy
ⁱ Cognitive Disorders and Dementia Unit, Health Authority and Services (AUSL) of Modena, Strada Minutara Hangar 3, 41122 Modena, Italy
^j FERB Alzheimer Centre, Ospedale Briolini, via A, Manzoni, 130, 24025 Gazzaniga, Italy
^k Department of Geriatric Psychiatry, Central Institute of Mental Health, Medical Faculty Mannheim, University of Heidelberg, J 5 68159 Mannheim, Germany
^l Health Economics & Outcomes Research (HEOR) unit, Real World Evidence (RWE) department, IQVIA, 17 bis Tsse, des Reflets, 92400 Courbevoie, France
^m NOVA Medical School, Faculdade de Ciências Médicas, Universidade Nova de Lisboa; CHRC, REAL Associate Laboratory, Campo dos Mártires da Pátria 130, 1169-056 Lisboa, Portugal
ⁿ School of Nursing and Human Sciences, Dublin City University, Collins Ave Ext, Whitehall, Dublin, Ireland
^o Joachim en Anna, center for specialized geriatric care, Groesbeekseweg 327, 6523 PA Nijmegen, the Netherlands
^p Institute of Gerontology and Geriatrics, Department of Medicine and Surgery, Division of Clinical Geriatrics, University of Perugia, Piazza dell'Università 1, 06123 Perugia, PG, Italy
^q Dept. of Neurology, Humanitas Gavazzeni, Via Mauro Gavazzeni 21, 24125 Bergamo, Italy
^r German Center for Neurodegenerative Diseases (DZNE), Patient-reported Outcomes & Health Economics Research, Ellernholzstraße 1, 17489 Greifswald, Germany
^s Charité-Universitätsmedizin Berlin, Campus Benjamin Franklin, Department of Psychiatry, Charitéplatz 1, 10117 Berlin, Germany
^t Alzheimer Center Amsterdam, Neurology department, Vrije Universiteit Amsterdam, Amsterdam UMC, location VUmc, De Boelelaan 1118, 1081 HZ Amsterdam, The Netherlands
^u Amsterdam Neuroscience, Neurodegeneration, De Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands
^v CINTESIS@RISE, Department of Education and Psychology, University of Aveiro – Campus, Universidade de Aveiro, 3810-193 Aveiro, Portugal
^w Universitario de Santiago, Edf 5, 3810‑193 Aveiro, Portugal
^x Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Halfdan Wilhelmsens alle 17, 3103 Tønsberg, Norway
^y Department of Geriatric Medicine, Oslo University Hospital, Sognsvannsveien 20, 0372, Oslo, Norway
^z Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Problemveien 11, 0313 Oslo, Norway
^aa IFT Institut für Therapieforschung, Mental Health and Addiction Research, Leopoldstrasse 175, 80804 Munich, Germany
^ab Institute for Medical Information Processing, Biometry and Epidemiology, LMU Munich, Marchioninistrasse 17, 80336 Munich, Germany
^ac Department of Health Services Research, Care and Public Health Research Institute, Faculty of Health Medicine and Life Sciences, Maastricht University, Duboisdomein 30, 6229 GT Maastricht, the Netherlands
^ad Dementia Services Development Centre Wales, Bangor University, Bangor LL57 2DG, UK
^ae IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Via Pilastroni, 4, 25125 Brescia, BS, Italy

^⁎Correspondence author at: Maastricht University, Universiteitssingel 40, 6200 MD Maastricht, The Netherlands, Affiliated to Karolinska InstitutetMaastricht UniversityUniversiteitssingel 40Maastricht6200 MDThe Netherlands

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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.