Reducing stigma
Reducing stigma
Leads
- Sara Evans-Lacko
Phase I
- Brazil
- India
- Indonesia
- Jamaica
- Kenya
- Mexico
- South Africa
Phase II
- Brazil
- Kenya
Phase III
- Brazil
- Kenya
WORK PACKAGE 3
Increasing dementia awareness and knowledge, reducing stigma
Leads
- Sara Evans-Lacko
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.
OUTPUTS
06 Oct 2022
Report
Toolkit: Don’t Forget I’m Human – Stopping Dementia Stigma
Evans-Lacko S, Farina N, Ferri C, Franzon AC, Godoy C, Hurzuk S, Jacobs R, Mata F, Mateus E, Musyimi C, Muyela L, Oliveira D, Ong E, Ortega M, Surawattananon N, Weidner W (2022) Don’t Forget I’m Human – Stopping Dementia Stigma. The STRiDE Anti-Stigma Toolkit, STRiDE Project, London.
14 Aug 2022
Journal article
Understanding, experiences and attitudes of dementia in India: A qualitative study
Hurzuk S, Farina N, Pattabiraman M, Ramasamy N, Alladi S, Rajagopalan J, Comas-Herrera A, Thomas PT, Evans-Lacko S (2022) Understanding, experiences and attitudes of dementia in India: A qualitative study, Dementia.
09 Jun 2022
Journal article
Stigma and its implications for dementia in South Africa: a multi-stakeholder exploratory study
Jacobs R, Schneider M, Farina N, du Toit P, Evans-Lacko S (2022) Stigma and its implications for dementia in South Africa: a multi-stakeholder exploratory study, Ageing and Society. https://doi.org/10.1017/S0144686X2200040X
30 Apr 2022
Guidance and Resources
Dementia anti-stigma intervention: Facilitator’s manual – Train-the-trainer program
Musyimi C, Farina N, Evans-Lacko S, Muyela L, Mutunga E, Mutiso V, Ndetei D (2022) Dementia anti-stigma intervention: Facilitator’s manual – Train-the-trainer program, Africa Mental Health Research and Training Foundation, Kenya.
20 May 2021
Journal article
Experiences of stigma and discrimination among people living with dementia and family carers in Brazil
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.
30 Apr 2021
Journal article
Perceptions and experiences of dementia and its care in rural Kenya
Musyimi CW, Ndetei DM, Evans-Lacko S, Oliveira D, Mutunga E, Farina N (2021) Perceptions and experiences of dementia and its care in rural Kenya, Dementia.
10 Dec 2020
Posters
Conference poster (ADI, 2020) Stigma related to dementia in India: Current status and challenges
STRiDE WP3 India ADI 2020 poster SH_
This poster, presented at the ADI conference 2020, highlights findings from a study of attitudes to dementia and associated stigma in India. The findings show that there is poor awareness of dementia, socio cultural aspects contributing towards perceptions leading to stigma and barriers in access to dementia care in India. It also calls for need to promote dementia awareness campaigns to general public in order to help address stigma and discrimination towards dementia in India.
21 Sep 2019
Report
Stigma in Brazil: World Alzheimer’s Report 2019
Ferri C, Mateus E, Oliveira D, da Mata F (2019) Stigma in Brazil: The narrative of a person with young-onset dementia, in Alzheimer’s Disease International, World Alzheimer Report 2019: Attitudes to Dementia, ADI, London, pp 116.
21 Sep 2019
Report
Stigma and dementia care in Kenya: World Alzheimer’s report
Musyimi C, Mutunga E, Ndetei D (2019) Stigma and dementia care in Kenya; Strengthening Responses to Dementia in Developing Countries (STRiDE) Project, in Alzheimer’s Disease International, World Alzheimer Report 2019: Attitudes to Dementia, ADI, London, pp 121-122.