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

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.

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

“…This stigma is likely to arise within institutionally-based (health service and policy) and community-based social relations, shaping how healthcare practitioners, policy makers and planners respond to and value the voices of people living with dementia (Abayneh et al, 2017) and the willingness of people living with dementia to disclose their diagnosis and risk social exclusion (Alzheimer's Disease International, 2019). Our qualitative research with people living with dementia and their families in Brazil indicates that stigma also manifests in questioning the views and experiences of people living with dementia, leading to people living with dementia internalising this doubt (Oliveira et al, 2021). In the absence of supportive intervention, such people are less likely to volunteer to participate in community-level care planning.…”

“…Dementia symptoms are often understood to be expected consequences of ageing, (Oliveira et al, 2021) leaving dementia underdiagnosed or diagnosed late. Delayed diagnosis is particularly pronounced in LMICs where families and health and care practitioners are less likely to be aware of dementia or to have received dementia training (Juárez-Cedillo, Jarillo-Soto, & Rosas-Carrasco, 2014).…”

“…When dementia is diagnosed, it may not be disclosed (Oliveira et al, 2021). Concerns for people living with dementia may motivate practitioners and families to shield them from difficult information and decisions rather than facilitating their right to autonomy and self-determination (Lepore, Shuman, Wiener, & Gould, 2017).…”

Reducing dementia-related stigma and discrimination among community health workers in Brazil: protocol for a randomised controlled feasibility trial

“…5 In dementia, stigmatisation occurs through negative stereotypes, related to cognitive decline can lead to depersonalisation and considering the person as unable to continue to live in and contribute to society. [6][7][8][9] Although not every person living with dementia is an…”

“…When stigma occurs, ‘power’ is exercised by stigmatisers to keep stigmatised groups ‘down’ or dominated/exploited; ‘within’, to maintain social norms; and ‘away’ by means of social exclusion 5. In dementia, stigmatisation occurs through negative stereotypes, related to cognitive decline can lead to depersonalisation and considering the person as unable to continue to live in and contribute to society 6–9. Although not every person living with dementia is an older person, older people living with dementia are likely to experience stigma related to dementia as well as from ageism and ableism, further impacting their rights and well-being 10…”