Active inclusion of people living with dementia in planning for dementia care and services in low- and middle-income countries

Author:

Breuer Erica1ORCID,Freeman Emily2ORCID,Alladi Suvarna3ORCID,Breedt Marinda4,Govia Ishtar5ORCID,López-Ortega Mariana6ORCID,Musyimi Christine7ORCID,Oliveira Déborah8ORCID,Pattabiraman Meera9,Sani Tara Puspitarini10,Schneider Marguerite11ORCID,Swaffer Kate12ORCID,Taylor Dubhglas13,Taylor Eileen14,Comas-Herrera Adelina2ORCID

Affiliation:

1. College of Health, Medicine and Wellbeing, University of Newcastle, Callaghan, NSW, Australia

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

3. Department of Neurology, National Institute of Mental Health and Neurosciences, Bangalore, India

4. STRiDE South Africa National Advisory Group, Cape Town, South Africa

5. Epidemiology Research Unit, Caribbean Institute for Health Research, The University of the West Indies, Kingston, Jamaica

6. Research Department, Instituto Nacional de Geriatria, Mexico City, Mexico

7. Africa Mental Health Research and Training Foundation, Nairobi, Kenya

8. Department of Psychiatry, Universidade Federal de São Paulo, Sao Paulo, Brazil

9. Alzheimer’s and Related Disorders Society of India, New Delhi, India

10. Alzheimer Indonesia and Atma Jaya Catholic University of Indonesia, Jakarta, Indonesia

11. Alan J. Flisher Centre for Public Mental Health, University of Cape Town, Rondebosch, South Africa

12. Dementia Alliance International and Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, NSW, Australia

13. Dementia Alliance International and Dementia Awareness Advocacy Team, Capalaba, QLD, Australia

14. Dementia Alliance International and Dementia Awareness Advocacy Team, Brisbane, QLD, Australia

Abstract

Involving people living with dementia in service design and planning has become more common in high-income countries. It remains rare in low- and middle-income countries where two-thirds of the world’s people with dementia live. In this commentary article, we explore the barriers to inclusion of people living with dementia in planning in low- and middle-income countries and make a case for the inclusion of people living with dementia in care and service planning. We suggest how this can be done at individual, community or national and state level using the following principles: 1) respecting the rights of people living with dementia to self-determination; 2) valuing people living with dementia’s unique understanding of dementia; 3) creating a culture of active inclusion which creates a space for people living with dementia to participate and 4) ensuring appropriate accommodations are in place to maximise participation.

Funder

UK Research and Innovation

Publisher

SAGE Publications

Subject

General Social Sciences,Sociology and Political Science,General Medicine

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