New paper: Experiences of stigma and discrimination among people living with dementia and family carers in Brazil

New paper: Experiences of stigma and discrimination among people living with dementia and family carers in Brazil

20 May 2021

Brazil

WP03 Reducing stigma

Research has 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 in Brazil. The paper was written by STRiDE colleagues, Déborah Oliveira, Fabiana Araújo Figueiredo Da Mata, Elaine Mateus, Christine W. Musyimi, Nicolas Farina, Cleusa P. Ferri and Sara Evans-Lacko, and published in the journal Ageing and Society this week.

This study aimed to understand stigma in relation to people living with dementia in São Paulo, Brazil. Key messages summarised by @DrDebs_Oliveira include:

  • 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 led to a selective disclosure of diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, and to validate their own 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 great need to increase awareness about dementia and to provide support and training on #personcentred and ethical care for carers in Brazil.

Full paper:

Oliveira D, Da Mata F, Mateus E, Musyimi C, Farina N, Ferri C, Evans-Lacko S (2021) Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: Qualitative study, Ageing and Society, 1-22.