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

Aida Suárez-González¹, Sharon A Savage², Suvarna Alladi³, Viviane Amaral-Carvalho^{4

5}, Faheem Arshad³, Julieta Camino^{6

7}, Paulo Caramelli⁵, Adelina Comas-Herrera⁸, Julia Cook⁹, Claudia Cooper¹⁰, Laura García Díaz¹¹, Stephanie M Grasso¹², Regina Jokel^{13

14

15}, Monica Lavoie¹⁶, Tomás León^{17

18}, Thomas Priya¹⁹, Teresita Ramos Franco¹⁷, Cathleen Taylor-Rubin^{20

21}, Rosemary Townsend²², Angelika Thöne-Otto^{23

24}, Andrea Slachevsky^{17

25

26

27}, Anna Volkmer²⁸, Wendy Weidner²⁹, Claire Mc O'Connor^{30

31

32}

Affiliations

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.

PMID: 38929036
PMCID: PMC11203756
DOI: 10.3390/ijerph21060790

Review

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

Aida Suárez-González et al. Int J Environ Res Public Health. 2024.

. 2024 Jun 17;21(6):790.

doi: 10.3390/ijerph21060790.

Authors

Affiliations

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.

PMID: 38929036
PMCID: PMC11203756
DOI: 10.3390/ijerph21060790

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: Alzheimer; frontotemporal dementia; posterior cortical atrophy; primary progressive aphasia; rehabilitation; young-onset dementia.

PubMed Disclaimer

Conflict of interest statement

RT is employed at Dyscover and VAC is employed at SER.COG. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

References

1. WHO Rehabilitation. [(accessed on 8 June 2024)]. Available online: https://www.who.int/news-room/fact-sheets/detail/rehabilitation.
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Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low-Middle-Income Countries

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical