Every 3 seconds, someone in the world develops dementia. Most of these individuals reside in low- and middle-income countries. Latin America is likely to be significantly impacted by the global increase in the number of people affected by dementia. By 2050, it is expected to rise from more than 7.8 million people in 2013 to over 27 million. Brazil has approximately 2 million people living with dementia and the majority of them have family members as the primary source of care and support.

People living with dementia experience cognitive changes, which may lead to stigmatization resulting in social isolation and delayed access to diagnosis and care. Stigma occurs when a label associated with a negative stereotype is attached to an individual characteristic (e.g., dementia). This causes people with such characteristics to be considered separate from and lower in status than others, leading to discrimination, a loss of social status, and inequalities among the stigmatized group. Understanding such experiences and their interpersonal mechanisms is essential to inform strategies to improve these individuals´ quality of life globally.

The World Alzheimer’s Report 2019, which reported on a global survey involving 70,000 people from 155 countries, showed that:

• 85% of respondents living with dementia thought that their opinions were not taken seriously
• Between 35% in high-income and 57% in low- and middle-income countries reported being mistreated in dating apps and intimate relationships
• 40% of the public thought doctors and nurses ignore people with dementia, 
• Over 35% of caregivers (e.g. family members, friends, or neighbors) globally reported hiding the diagnosis of a family member living with dementia

An experience in Sao Paulo, Brazil

In a small study we conducted as part of the STRiDE Program (Strengthening Responses to Dementia in Middle-Income Countries) with six people living with dementia and 15 family caregiver from Sao Paulo, Brazil, we found that people living with dementia viewed this condition as a typical aging issue. Caregivers reported low levels of knowledge and awareness. People living with dementia minimized and normalized their dementia to adapt, build acceptance, and find meaning through it. The ‘normalization’ of memory loss was often legitimized using the information received from their healthcare providers. Individuals living with dementia also reported social isolation and fear of enduring adverse reactions from people, which commonly led to selective disclosure of their diagnosis and experiences due to fear of unfavorable responses reactions or exclusion.

Caregivers considered their loved ones as passive recipients of care, in need of their protection and decisions, which worked as a strategy to validate their own caring experiences rather than cause any harm. In doing so, however, caregivers ended up underestimating the capacities of the person living with dementia, depersonalizing them as individuals, and restricting the person’s freedom.

Caregivers’ expectation that people living with dementia should ‘behave obediently’ reflected an exasperated attempt to have the person’s neuropsychiatric symptoms under control rather than exert power over their loved ones.

You can access the study here.

Three recommendations based on the results of our study:

1. Support and training on person-centered and ethical care could help caregivers make sense of their experiences to respect the rights and personhood of the person living with dementia.
2. Anti-stigma interventions for the wider community could substantially impact the lives of caregivers and people living with dementia through reducing burden, discrimination, and social exclusion, among others.
3. Anti-stigma campaigns might effectively mitigate misrepresentations and myths about dementia, the use of stigmatized language and stereotypical views, and address issues identified as necessary among those with experience.

The complexity of the social experience of dementia and the ‘fine lines’ between being good caregivers and being a ‘stigmatizer’ demonstrates the need for continuous support for caregivers and people living with dementia. Caregivers in Brazil are mostly unsupported, and family members provide nearly all care.

What is the level of knowledge and stigma about people living with dementia in your community? Tell us in the comments section below.