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 Societyhttps://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.