WORK PACKAGE 3

Increasing dementia awareness and knowledge, reducing stigma

Stigma can negatively affect personal relationships and quality of life and delay access to care and treatment. This stigma could include low awareness or knowledge of treatments, negative attitudes or discriminatory behaviour by individuals, in addition to unfair institutional or governmental practices or policies.

Misunderstanding of what causes dementia and fear of being labelled as having dementia can result in the person living with dementia being badly treated or harmed. Stigma from healthcare practitioners, policymakers or society more widely can also lead to reduced funding, lower quality of care and lower diagnosis of dementia. On the other hand, reducing stigma, could improve care quality and treatment seeking and lead to better quality of life for people living with dementia and their carers.

The best evidence for reducing stigma is intergroup contact. This has been shown in other fields such as HIV, mental illness and race / ethnicity discrimination. But we know little about how this works in relation to dementia or in low- and middle-income countries.

Our aim is to reduce stigma by increasing understanding and awareness of dementia among healthcare professionals and community members. A key approach is to empower individuals with dementia and families to share their experiences and build awareness and engagement. Our work is building on earlier work by Alzheimer’s Disease International on Dementia Friendly Communities and will specifically integrate the element of contact through personal testimony from a person with dementia and/or their carer.