The number of people living with dementia is forecast to more than triple, from over 50 million currently to 152 million by 2050.1 The growing number of people with dementia can be attributed to, in part, by increasing life expectancy in low- and middle-income countries.
This toolkit originates from the STRiDE project (Strengthening Responses to Dementia in Low and Middle-Income countries). It is rooted in the voices and experiences of people living with dementia and their care partners, and builds on the research evidence generated from the STRiDE project about how to reduce stigma and discrimination.
It is a collaborative effort developed by people living with dementia, carers, advocates and researchers involved in STRiDE. This includes the voices of people from Brazil, India, Indonesia, Kenya, Jamaica, Mexico and South Africa, in addition to the UK.
Introduction to the STRiDE toolkit
The consequences of stigma are often described as being as bad or worse than the impacts of the condition itself. At the individual level, stigma can undermine life goals, reduce participation in meaningful life activities and worsens a person’s quality of life. At the societal level, it can influence policy and reduce funding allocated to care and support. Here we provide a set of practical tools from seven different low-and middle-income countries to help others think about the impact of stigma and how to challenge stigma against people living with dementia and their care partners. We share first hand experiences of stigma and discrimination and the consequences that it has for people living with dementia and their families --indeed describing the painful scars that result from being shunned or excluded.
We conceptualise stigma as problems of knowledge (ignorance), problems of attitudes (prejudice), and problems of behaviour (discrimination)2.
There are evidence-based approaches to reducing stigma and discrimination illustrated via a series of case studies showing how people living with dementia and carers confronted stigma in their own life.
Whilst cultural adaptation and translation of any approach to addressing stigma is vital, we also recommend making use of existing knowledge and resources so that we can learn from other successful anti-stigma work in other contexts and cultures and from other fields and types of health conditions and disabilities that are also affected by stigma.
Experiences of stigma and discrimination are common. In 2019, results from the largest ever global survey on dementia-related stigma,3 including 835 responses from people living with dementia found 84% experienced stigma and discrimination in at least one area of their life.
Social change of this type requires concerted effort at many levels. Our goal is to create an environment where people living with dementia and carers can live their best lives, in a meaningful and safe manner. People living with dementia need to lead this vision of how a world without stigma could look. However, meaningful changes require both top down and bottom up approaches. We need to work hard to change unfair policies, practices and harmful social norms which are embedded in communities.
This can only happen by empowering and supporting people living with dementia, families and care partners to confront stigma and discrimination. Thus, we also discuss practical recommendations of how to involve people living with dementia and families and other considerations when adapting or implementing an anti-stigma programme.
We cannot, however, rely only on people with dementia and their carers to enact this change. Thus, these tools are also to educate and support the general public, health care and social care professionals and others about how we can create behaviour change and become advocates for reducing stigma and discrimination.
We recognise that negative perceptions contribute to the ignorance and stigma surrounding dementia. However, with this toolkit, we also make a call to action to go beyond improving knowledge and awareness raising and to consider how we can change hurtful behaviours, unfair treatment and policies and promote inclusion. An important aspect of achieving this social change is to empower people living with dementia to lead these initiatives and we discuss strategies for this.
Our goal is to provide a comprehensive and dynamic resource which is based on existing evidence in order to empower all people to fight stigma.
We want to share this as widely as possible and to do this we also need your help. In addition to sharing this toolkit with others, we have included links throughout the document which allow you to share quotes and resources via social media including Twitter, LinkedIn and Facebook. Please click on the social media icons throughout the document which allow you to easily share this material and help us grow this social movement together to reduce stigma!
#DontForgetImHuman
References:
1GBD 2019 Dementia Forecasting Collaborators. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019. Lancet Public Health. 2022;7(2):e105. doi:10.1016/S2468-2667(21)00249-8
2G Thornicroft, D Rose, A Kassam, N Sartorius Stigma: ignorance, prejudice or discrimination? Br J Psychiatry, 190 (2007), pp. 192-193
3Evans-Lacko, S, Bhatt, J., Comas‐Herrera, A., D’Amico, F., Farina, N., Gaber, S., Knapp, M., Salcher-Konrad, M., Stevens, M., and Wilson, E. (2019). Attitudes to dementia survey. World Alzheimer Report 2019, Attitudes to dementia. London: Alzheimer's Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf
