Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low–Middle-Income Countries

Aida Suárez-González (), Sharon A Savage, Suvarna Alladi, Viviane Amaral-Carvalho, Faheem Arshad, Julieta Camino, Paulo Caramelli, Adelina Comas-Herrera, Julia Cook, Claudia Cooper, Laura García Díaz, Stephanie M. Grasso, Regina Jokel, Monica Lavoie, Tomás León, Thomas Priya, Teresita Ramos Franco, Cathleen Taylor-Rubin, Rosemary Townsend, Angelika Thöne-Otto, Andrea Slachevsky, Anna Volkmer, Wendy Weidner and Claire MC O’Connor
Additional contact information
Aida Suárez-González: Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London (UCL), London WC1N 3BG, UK
Sharon A Savage: School of Psychological Sciences, College of Engineering, Science and Environment, The University of Newcastle, Callaghan, NSW 2308, Australia
Suvarna Alladi: Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Hosur Road, Bangalore 560030, India
Viviane Amaral-Carvalho: Departamento de Neurologia, Faculdade de Medicina da Universidade de São Paulo, São Paulo 01246-903, SP, Brazil
Faheem Arshad: Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Hosur Road, Bangalore 560030, India
Julieta Camino: Institute of Health and Social Care, London South Bank University, London SE1 0AA, UK
Paulo Caramelli: Behavioral and Cognitive Neurology Unit, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte 30130-100, MG, Brazil
Adelina Comas-Herrera: Care Policy and Evaluation Centre, London School of Economics and Political Science, London WC2A 2AZ, UK
Julia Cook: Herefordshire and Worcestershire Health and Care NHS Trust, Worcester WR5 1JR, UK
Claudia Cooper: Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, London EC1M 6BQ, UK
Laura García Díaz: School of Rehabilitation Science, McMaster University, Hamilton, ON L8S 1C7, Canada
Stephanie M. Grasso: Department of Speech, Language and Hearing Sciences, University of Texas, Austin, TX 78712-1069, USA
Regina Jokel: Rotman Research Institute, Toronto, ON M6A 2X8, Canada
Monica Lavoie: Chaire de Recherche sur les Aphasies Primaires Progressives—Fondation de la Famille LEMAIRE, CHU de Québec-Université Laval, Québec, QC G1V 0A6, Canada
Tomás León: Memory Unit, Neurology Department, Memory and Neuropsychiatric Center (CMYN), Hospital del Salvador and Faculty of Medicine, University of Chile, Santiago 7500922, Chile
Thomas Priya: Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), Hosur Road, Bangalore 560029, India
Teresita Ramos Franco: Memory Unit, Neurology Department, Memory and Neuropsychiatric Center (CMYN), Hospital del Salvador and Faculty of Medicine, University of Chile, Santiago 7500922, Chile
Cathleen Taylor-Rubin: Speech Pathology Department, War Memorial Hospital, Sydney, NSW 2024, Australia
Rosemary Townsend: Dyscover Ltd., Leatherhead KT22 0BN, UK
Angelika Thöne-Otto: Clinic for Cognitive Neurology, University Hospital Leipzig, 04103 Leipzig, Germany
Andrea Slachevsky: Memory Unit, Neurology Department, Memory and Neuropsychiatric Center (CMYN), Hospital del Salvador and Faculty of Medicine, University of Chile, Santiago 7500922, Chile
Anna Volkmer: Division of Psychology and Language Sciences, University College London (UCL), London WC1H 0AP, UK
Wendy Weidner: Alzheimer’s Disease International, London SE1 4PU, UK
Claire MC O’Connor: Centre for Positive Ageing, HammondCare, Sydney, NSW 2170, Australia

IJERPH, 2024, vol. 21, issue 6, 1-16

Abstract: The WHO Dementia Global Action Plan states that rehabilitation services for dementia are required to promote health, reduce disability, and maintain quality of life for those living with dementia. Current services, however, are scarce, particularly for people with young-onset dementia (YOD). This article, written by an international group of multidisciplinary dementia specialists, offers a three-part overview to promote the development of rehabilitation services for YOD. Firstly, we provide a synthesis of knowledge on current evidence-based rehabilitative therapies for early-onset Alzheimer’s disease (EOAD), behavioural variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), and posterior cortical atrophy (PCA). Secondly, we discuss the characteristics of rehabilitation services for YOD, providing examples across three continents for how these services can be embedded in existing settings and the different roles of the rehabilitation multidisciplinary team. Lastly, we conclude by highlighting the potential of telehealth in making rehabilitation services more accessible for people with YOD. Overall, with this paper, we aim to encourage clinical leads to begin introducing at least some rehabilitation into their services, leveraging existing resources and finding support in the collective expertise of the broader multidisciplinary dementia professional community.

Keywords: young-onset dementia; rehabilitation; Alzheimer; frontotemporal dementia; primary progressive aphasia; posterior cortical atrophy (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2024
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