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Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study

Published online by Cambridge University Press:  20 May 2021

Déborah Oliveira*
Affiliation:
Department of Psychiatry, Medical School, Universidade Federal de São Paulo, Sao Paulo, Brazil
Fabiana Araújo Figueiredo Da Mata
Affiliation:
Department of Psychiatry, Medical School, Universidade Federal de São Paulo, Sao Paulo, Brazil
Elaine Mateus
Affiliation:
Federação Brasileira das Associações de Alzheimer (FEBRAZ), Parana, Brazil Applied Linguistics, Department of Modern Languages, Universidade Estadual de Londrina (UEL), Parana, Brazil
Christine W. Musyimi
Affiliation:
Research Department, Africa Mental Health Research and Training Foundation, Nairobi, Kenya
Nicolas Farina
Affiliation:
Centre for Dementia Studies, Brighton and Sussex Medical School, Brighton, UK
Cleusa P. Ferri
Affiliation:
Department of Psychiatry, Medical School, Universidade Federal de São Paulo, Sao Paulo, Brazil Health Technology Assessment Unit, Hospital Alemao Oswaldo Cruz, Sao Paulo, Brazil
Sara Evans-Lacko
Affiliation:
Care Policy and Evaluation Centre, London School of Economics and Political Science, London, UK
*
*Corresponding author. Email: oliveiradc.phd@gmail.com

Abstract

This study aimed to understand stigma in relation to people living with dementia in São Paulo, Brazil. A critical narrative inquiry methodology was used. Home-based semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Data analysis was conducted using inductive and deductive techniques. The latter was informed by Link and Phelan's sociological theory of stigma. We found that dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels of knowledge and awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their own caring experiences, rather than to cause any harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding ‘obedience’ and restricting the person's freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred and ethical care for carers in Brazil.

Type
Article
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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