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

Author:

Suárez-González Aida1ORCID,Savage Sharon A2ORCID,Alladi Suvarna3,Amaral-Carvalho Viviane45ORCID,Arshad Faheem3,Camino Julieta67ORCID,Caramelli Paulo5ORCID,Comas-Herrera Adelina8ORCID,Cook Julia9,Cooper Claudia10,García Díaz Laura11ORCID,Grasso Stephanie M.12,Jokel Regina131415,Lavoie Monica16ORCID,León Tomás1718ORCID,Priya Thomas19ORCID,Ramos Franco Teresita17,Taylor-Rubin Cathleen2021ORCID,Townsend Rosemary22,Thöne-Otto Angelika2324ORCID,Slachevsky Andrea17252627,Volkmer Anna28,Weidner Wendy29,O’Connor Claire MC303132ORCID

Affiliation:

1. Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London (UCL), London WC1N 3BG, UK

2. School of Psychological Sciences, College of Engineering, Science and Environment, The University of Newcastle, Callaghan, NSW 2308, Australia

3. Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Hosur Road, Bangalore 560030, India

4. Departamento de Neurologia, Faculdade de Medicina da Universidade de São Paulo, São Paulo 01246-903, SP, Brazil

5. Behavioral and Cognitive Neurology Unit, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte 30130-100, MG, Brazil

6. Institute of Health and Social Care, London South Bank University, London SE1 0AA, UK

7. School of Health Sciences, Faculty of Medicine and Health Sciences, University of East Anglia, Norwich NR4 7TQ, UK

8. Care Policy and Evaluation Centre, London School of Economics and Political Science, London WC2A 2AZ, UK

9. Herefordshire and Worcestershire Health and Care NHS Trust, Worcester WR5 1JR, UK

10. Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, London EC1M 6BQ, UK

11. School of Rehabilitation Science, McMaster University, Hamilton, ON L8S 1C7, Canada

12. Department of Speech, Language and Hearing Sciences, University of Texas, Austin, TX 78712-1069, USA

13. Rotman Research Institute, Toronto, ON M6A 2X8, Canada

14. Faculty of Medicine, University of Toronto, Toronto, ON M5S 1A8, Canada

15. Baycrest Health Sciences, Toronto, ON M6A 2E1, Canada

16. Chaire de Recherche sur les Aphasies Primaires Progressives—Fondation de la Famille LEMAIRE, CHU de Québec-Université Laval, Québec, QC G1V 0A6, Canada

17. Memory Unit, Neurology Department, Memory and Neuropsychiatric Center (CMYN), Hospital del Salvador and Faculty of Medicine, University of Chile, Santiago 7500922, Chile

18. Department of Psychiatry and Global Brain Health Institute, Trinity College, D02 K104 Dublin, Ireland

19. Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), Hosur Road, Bangalore 560029, India

20. Speech Pathology Department, War Memorial Hospital, Sydney, NSW 2024, Australia

21. School of Psychological Sciences, Macquarie University, Sydney, NSW 2109, Australia

22. Dyscover Ltd., Leatherhead KT22 0BN, UK

23. Clinic for Cognitive Neurology, University Hospital Leipzig, 04103 Leipzig, Germany

24. Max-Planck Institute for Human Cognitive and Brain Sciences, 04103 Leipzig, Germany

25. Geroscience Center for Brain Health and Metabolism (GERO), Santiago 7500922, Chile

26. Neuropsychology and Clinical Neuroscience Laboratory (LANNEC), Physiopatology Program—Institute of Biomedical Sciences (ICBM), Neuroscience and East Neuroscience Departments, Faculty of Medicine, University of Chile, Santiago 7500922, Chile

27. Neurology and Psychiatry Department, Clínica Alemana-Universidad Desarrollo, Santiago 7650568, Chile

28. Division of Psychology and Language Sciences, University College London (UCL), London WC1H 0AP, UK

29. Alzheimer’s Disease International, London SE1 4PU, UK

30. Centre for Positive Ageing, HammondCare, Sydney, NSW 2170, Australia

31. School of Psychology, Faculty of Sciences, University of New South Wales, Sydney, NSW 2052, Australia

32. Neuroscience Research Australia, Sydney, NSW 2031, Australia

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.

Funder

National Institute for Health and Care Research

UK Research and Innovation

Dementia Centre for Research Collaboration Post-Doctoral Fellowship

CNPq

Estelle & Carl Epstein Family philanthropic funds

National Institute on Aging/National Institute of Health

NIHR Advanced Fellowship

ANID

National Institutes of Health

National Institutes of Aging

Alzheimer’s Association

Fogarty International Center and Rainwater Charitable Foundation’s Tau Consortium

Bluefield Project to Cure Frontotemporal Dementia

Global Brain Health Institute

Dementia and Neurodegenerative Disease Policy Research Unit–Queen Mary

Publisher

MDPI AG

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