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Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study
- Publication Year :
- 2023
-
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.
- Subjects :
- Gerontology
Health (social science)
030504 nursing
Social Psychology
Public Health, Environmental and Occupational Health
Stigma (botany)
medicine.disease
HV Social pathology. Social and public welfare. Criminology
Narrative inquiry
03 medical and health sciences
0302 clinical medicine
Harm
Arts and Humanities (miscellaneous)
HN Social history and conditions. Social problems. Social reform
mental disorders
medicine
Dementia
030212 general & internal medicine
Geriatrics and Gerontology
0305 other medical science
Psychology
Selective disclosure
Qualitative research
Subjects
Details
- Language :
- English
- ISSN :
- 0144686X
- Database :
- OpenAIRE
- Accession number :
- edsair.doi.dedup.....33b8bf1747fe8f7b7041a9a47a06b575