Don’t forget I’m human – Stopping dementia stigma – STRiDE Anti-stigma toolkit
This toolkit tackles stigma faced by people with dementia. It includes stories of real people, summaries of evidence-based programmes and practical tools.
Don't forget
I'm human
Stopping dementia stigma
Introduction to the STRiDE toolkit
This toolkit is rooted in the voices and experiences of people living with dementia and their care partners
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
Purpose of the toolkit and why we focus on stigma and dementia
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.
Go beyond raising awareness: promote inclusion
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
Experience of stigma and discrimination from different STRiDE countries
Stigma and discrimination – common themes
Listen to real life experiences from people living in STRiDE countries
Listen in local languages
Myths and misperceptions (1)
Myths and misperceptions are false beliefs or ideas which may be widely held but that contradict the best available evidence. In the case of dementia, this may relate to a lack of understanding about its causes or consequences or how to support people
Some say she is mad, others say she may have been practicing witchcraft, while others say she may have stolen from a home where they ruin the lives of people that steal from them.”
Carer, Kenya
Dementia is not madness, but they are close to each other
Caregiver, Kenya
People with dementia are ‘sufferers’, ’demented’, ‘victims’ because they have been ‘thinking high.’1
General public, Kenya
1 A term associated with people who go off to the city to earn money but return to a rural setting in retirement and become socially isolated
Dementia is a disease for old people
General public, Kenya
Myths and misperceptions (2)
People living with dementia are really confused and they cannot understand a thing
Caregiver, Kenya
My aunt was worried, my mother was disturbed by an evil spirit. From then on, my family thought mystical things
Carer, Indonesia
They also say (‘ Upar ka prakop ho gaya’ ) it's a doing of Ghost or demons
Healthcare professional, India
People also say, he has gone senile, has gone
cuckoo...so it becomes a stigma with them, people don't want to marry off their daughters in such a family
General public, Female India
Myths and misperceptions (3)
In some it may be hereditary, but in others I feel that it was because of too much stress, the fact that ...maybe the brain is working, and, and they are thinking a lot and they are people that are more active than others. I feel it is sometimes that, no? that the brain, um, is doing more effort than it should, maybe that is one of the causes [of having dementia]
Carer at residential centre, Mexico
I have come to the conclusion that maybe stress can be a factor, because all our users here are very intelligent...speak English, one or more languages, have a high educational level... so I think they were always under very strong level of stress because of their work...and I see my grandma, she is 91 and has no schooling... and she is great, remembers everything...
Carer at residential centre, Mexico
Dehumanisation and depersonalisation (1)
Dehumanisation occurs when people with dementia are perceived as less than human -- where people focus on disease and symptoms rather than the person.
Because it's not the same thing, the person is not normal. Normal in the sense of expressing herself normally in a line of reasoning that begins and ends. So how are you going to talk to a person who scrambles and forgets everything all the time?
General public, Brazil
It is a shock for you to know that the person will lose her independent life, that she will no longer be that person, because Alzheimer’s transforms the person, right? ... A person, over time, will stop being...
Carer, Brazil
A person living with dementia is served food far away from the rest of the family members. Or where such a person is not needed near the other family members... They are served food and told to use their hands to eat.
General public, Kenya
If it's a person with dementia, a really crazy person, who can be aggressive, hurt other people all the time, I don't know where you can [go]... I think you have to study and try to bring this person back to normality
Healthcare professional, Brazil
Dehumanisation and depersonalisation (2)
How much time do you have to be with a person who has dementia, who you know will take a lot of [your] time? A trip to the supermarket with a person who has dementia will turn what was supposed to be an hour into at least three hours until you convince them to get in the car, then you don't know if they'll want to come back.
General public, Brazil
They still have the same feelings and emotions … To us, it doesn’t seem like they do and I think that’s why they often get neglected like friends and family because you go there [repeatedly], and they don’t remember who you are, so is it going to make a difference if I actually go there?
General public, South Africa
We see it in other centres and there is really a lack of training... because they just have them sleeping or they are asleep, or maybe the activities that are offered do not have a justification, or they are very infantilised and really because they are not taking the attention, the importance or the dignity and respect that the person needs in this disease.
Carer at day centre, Mexico
Dehumanisation and depersonalisation (3)
There are many family members that come and tell us 'the thing is I am rude to him, because he is rude to me', but they do not understand it is the process of the disease, or for example, they do not want to eat and throw things at them.
Carer at day centre, Mexico
Social exclusion and being shunned (1)
People living with dementia and their family members may face disadvantage or be excluded from participating fully in society, social situations, healthcare, economic or political contexts.
Personally I didn’t want to disassociate myself with the community, but the exaggerated negative talk lowered my self-esteem and I couldn’t take it anymore.
Caregiver, Kenya
Sometimes they [community members] shout and are harsh to us, [because of] what Mother does.
Caregiver, Kenya
She mistrusts anyone and everyone. And so they all, her friends from church, there in the neighbourhood, they are all afraid to come because if she can’t even greet you, how are you going to be able to visit her? They can see there is something wrong with her.
Carer, South Africa
People also say, he has gone senile, has gone cuckoo, old man in my home who has gone Senile, the family who has a person who has gone mad so it becomes a stigma with them, people don't want to marry off their daughters in such a family, feel they should not marry here.
Carer, India
Social exclusion and being shunned (2)
People started to shun away from me…once you start sharing, people will start to side-line you. They will start to label you. So rather keep it, your small problem, and then you suffer alone
Person living with dementia, South Africa
Having family over for an afternoon, for me is very tiring … I don’t think I should
have to explain myself for my wife’s actions … she’s got a condition, accept it,
don’t question it, don’t try and analyse it … don’t try and make it seem like it’s
something that it’s actually not.
Carer, South Africa
They [family] want to take over your life and you don't really have a say in anything. So I have became very lonely and keep to myself. They will also leave you to suffer on your own.
Person living with dementia, South Africa
Loss of status and responsibilities (1)
Loss of status happens when people living with dementia or their care partners are evaluated or perceived as having less esteem, honour, or desirability because of dementia. They may have responsibilities removed as they are seen as incapable of doing things often ignoring the person's wishes and voice.
She always used to make coffee or something, [which was] very dangerous. We asked him [father-in-law] not to let her do anything else.
Carer, Brazil
It's so hard to deal with them, the work is so hard. And I also don't know how I would feel in front of a person who has such an intense degree of dementia...hospitalisation is the way to go. And I think it's the sedative that calms this person down daily so that he's calm, relaxed and doesn't do so many things, shall we say, wrong. Like turning off the gas, taking care of (things), because she can't move here or there. How do you calm down a person like that? I think it's the sedation.
General public, Brazil
[Husband said] ‘[Name] eat it!’, then she looked like: ‘But I ... but I ...’, ‘Eat it!’, then he would violently put the food in her mouth. Because ‘that is that time when she has to eat it’...
Carer, Brazil
There are those who take advantage ... And then they [sons] decided that it was better to take her debit card and cheque-book from her.
Carer, Brazil
Loss of status and responsibilities (2)
People with dementia need to be restrained at home so that they do not get lost.
Caregiver, Kenya
The other thing that people are telling me to do is to ensure my mother stays at home, locked there and closely supervised lest she goes out.
Caregiver, Kenya
Concealment and shame (1)
People living with dementia or their care partners may hide their dementia or keep symptoms secret so as to avoid being treated unfairly or because of the anticipation of discrimination.
It seems to me that there was a barrier. We never got to talk about it [dementia], neither between my sisters, nor with her [mother living with dementia].
Carer, Brazil
We began to keep this kind of information [from them], you know? We had relatives who passed away and we began to avoid telling the news to them.
Carer, Brazil
You are willing to lie or to hide the fact that they have dementia, sometimes you end up getting through more than when you speak the truth.
Caregiver, Jamaica
The only people I can inform are my children
Caregiver, Kenya
Concealment and shame (2)
I will not go around the community disclosing details about my wife’s illness, the only person outside my family that I disclose to is the doctor.
Caregiver, Kenya
Even the family member does not want to expose that person with dementia is in their family, it is a social issue, people will curse them... What they [family] do is they try to keep them [person with dementia] locked in home.
Healthcare professional- India
I have been trying to hide … It’s fine … keeping this to myself, I didn’t want to
involve other people.
Person living with dementia, South Africa
...she saw the signs a long time ago. But she kept them secret thinking: 'oh they are going to think I am crazy or mad or they are going to take away all my rights.
Carer, South Africa
Concealment and shame (3)
People will rather keep those symptoms to themselves rather than sharing because once you start sharing, people will start to side-line you. They will start to label you. So rather keep it, your small problem, and then you suffer alone.
Person living with dementia, South Africa
...no, they do not talk about it, even saying that a family member has dementia, because, because effectively they confuse it a lot with saying the person is crazy...
Carer at a day centre, Mexico
Unfair treatment in healthcare (1)
At the structural level, stigma can lead to fewer health and social care services and funding or offering a lower standard of care for dementia care relative to other types of conditions. It can also lead to substandard care and support, denial of services, or unfair treatment or even abuse. People living with dementia and carers may then also avoid care seeking because of stigma
I asked what the medicines were for and what I suffered from. From my observation, I simply thought the doctor was tired and overwhelmed by the number of patients that were waiting to be seen. He rebuked me and I left the room. He didn’t seem to have time to explain to me the purpose of the medicine.
Person living with dementia, Kenya
Dealing with a person with dementia is like a source of stress.
Healthcare professional, Kenya
People with dementia and their family feel stigma even to receive treatment... As a remediation we offer services for free, still they don't want to come. They don't want to be seen in department of psychiatry or department of neurology, [they think] what if someone identifies them as service user.'
Health care professional, India
We … even spoke to [hospital name] Neurology Department and they said ‘well there’s not much you can really do about a patient with Alzheimer’s/dementia problems’... so
we don’t really treat them that much’.
Carer, South Africa
Unfair treatment in healthcare (2)
They [nurses] don't know, and they don't care... I said to them, please, my husband can't eat by himself. When I got there it nearly broke my heart. I can even just break into tears now. He was sitting with a bowl, (starts to cry) and he was licking it like a dog...And I went to the nurses and I said, why isn't somebody helping my husband? ... They just left him to eat like a dog, to lick out of the bowl, that upset me so much.
Carer, South Africa
Problem minimisation (1)
People may undermine the person living with dementia or their care partners by minimising their condition or dismissing symptoms as normal aging. Although sometimes well meaning, these statements can be hurtful and may make the person feel they have to justify themself.
[Doctor] said it was normal, that it was really due to age...so it is really a faulty memory’, he said, ‘it’s part of life'.
Person living with dementia, Brazil
it is seen as normal aging due to lack of dementia awareness and is generally neglected in such cases.
Healthcare professional, India
But also medically [referring to physicians] they have a different idea because when some one tells them, 'It is just that maybe I have dementia', they say 'no, no, it is just ageing' 'it is that you are old'...
Carer at day centre, Mexico
Examples of overcoming stigma from different STRiDE countries
Examples from people living with dementia and their care partners about how they confront stigma and discrimination in their community
People living with dementia and their care partners face stigma and discrimination in many areas of life. We described these experiences and harmful consequences in the previous section.
Our ultimate aim is to create an environment where people living with dementia and carers can live their best lives in a meaningful and safe manner. This means ending stigma. However, stigma reflects the culture and beliefs in society which can be deep rooted and have a long history. Thus, even with concerted effort, this type of social change takes time.
Because of this, it is also important to empower people living with dementia and carers, whilst supporting them to confront stigma and discrimination in a safe and meaningful way. We recognise this may take many forms and approaches. We provide a few examples from people living with dementia and their care partners here about how they have overcome stigma and discrimination in their own life.
For someone to accept that they have dementia is a difficult process. There is stigma. What I want is for people not to treat you differently. Don’t speak about me as if I am not in the room. People will talk past you but your close family and friends will understand. I overcome the difficulty by accepting my diagnosis. Accept that I have dementia. My close family and friends understand and that helps me enormously. That support. At first I didn’t accept it. I struggled. But then I started to work around the illness. What you need to do is accept it, make the most of every day. Accepting is such a big thing to overcome the stigma. I started telling people this is my condition. It is what it is, it’s not going to change. To tell people these are my circumstances. When I make mistakes, forgive me. If you said you are going to visit me or meet me somewhere, remind me. One should not take offense if people remind you. I use to take offense but not anymore. Sit and plan and say, I’m going to do this tomorrow. Make notes for yourself. I play these games, like [word]search games, I’m terrible at it but if I keep on doing it, I find it helps me remember things. That’s how it was for me.
Reported by a person living with dementia, South Africa
I still have time to spend with my wife. We don't see stigma as negative we see it as a challenge another step in life
Reported by a person living with dementia and her care partner, South Africa
Again awareness can be created in schools during schools’ parents’ day meetings. This is a good avenue to reach so many parents at once and train them. Information can also be passed in churches, to ensure its spread to all community measures.
Reported by a female caregiver, Kenya
Yes, I need to support them [carers of people with dementia] by giving them courage from the experience I have learnt from Mother. When I do, they will be challenged to open up...
Reported by a female caregiver, Kenya
Awareness can be created through community dialogues.
Reported by a female caregiver, Kenya
…people need to be loved, need to be cared for and that you need to listen to them. As much as you know, you also need to give them space to be who they want to be ... so you need to be patient with them, understand them, and just listen
Reported by a female caregiver, Limpopo province, South Africa
Initially we used to avoid social gatherings and not take my mother out, like for shopping and all, but we realised that somewhere we ourselves were harming her and contributing to stigma by hiding our mother and not disclosing her disease that she has dementia. It took us quite some time to change our impression about the whole thing. Now we take her to relatives' houses, social gatherings and tell people what dementia is. That it is a brain disease and there are many different things that happen (symptoms). We are a bit selective when it comes to taking her out to people's houses as many still don't understand why my mother is behaving so or they simply refuse to understand dementia as they have their own ideas about it.
Reported by Caregiver, Hyderabad, India
Case study on reducing stigma
... in Kenya
Context of dementia in Kenya
Within Low and Middle Income Countries (LMICs), Sub-Saharan African countries have the fastest growing rates of older people (Alzheimer’s Disease International, 2017). In Kenya, the population of people aged 60 years and older was 4.3% in 2017. It is expected to reach 10.6% in 2050 (United Nations, 2017). There are currently no official figures for the number of people living with dementia, but it is estimated that there could be over 86,000 people living with dementia in Kenya, more than quadrupling to 361,000 by 2050 (GBD 2019 Dementia Forecasting Collaborators, 2022).
In Kenya, dementia is seen as a “European disease”. As such, many people living with the condition in Kenya do not seek a diagnosis or support. In instances where people do seek a diagnosis, they are met by overstretched healthcare systems in addition to poor knowledge or communication. As a result, people living with dementia and carers facing these systems can begin to feel lost and disillusioned
Within the community, symptoms associated with dementia tend to be minimised and just seen as a normal part of ageing. When symptoms are recognised, the terminologies used (e.g., Thing’ai’/Thinking high1) can perpetuate negative myths and misperceptions about dementia.
All these factors contribute to stigma at individual, community and societal levels within Kenya. Interviews with people with dementia and their carers reveal many instances of public stigma, discrimination, and negative stereotypes.
1A term associated with people who go off to the city to earn money but return to a rural setting in retirement and become socially isolated.
Proposed solutions
It is clear that there is a profound effect of stigma on the lives of people living with dementia and their carers within Kenya. However, it is important to recognise that those living with stigma and discrimination have solutions – they only need to be asked. Our consultation with people living with dementia and their carers in Kenya found they recognize that raising awareness was pivotal to addressing stigma, and this had to occur by creating a dialogue within communities.
Developing an anti-stigma intervention in rural Kenya
Developing the intervention together with people living with dementia, care partners and members of the local community
To develop an anti-stigma intervention in rural Kenya, we began by working together with the community, in particular people living with dementia and their care partners, to understand perspectives, resources and goals for reducing stigma. This first involved negotiating entry to the community with the local leader. We then held a series of focus group discussions and interviews with people living with dementia, care partners, healthcare workers and members of the general public.
These discussions helped us to understand existing knowledge, attitudes and behaviours towards people living with dementia and carers; experiences of stigma and discrimination; local language around dementia; current practices to promote social inclusion and ideas about how to reduce stigma and empower people living with dementia and their carers.
We formulated the intervention and delivery approach based on these dialogues. Our intervention was further informed by existing evidence-based approaches to reduce stigma (for example, integrating social contact) and local expertise about delivering community interventions. For example, we used a ‘train the trainer’ approach together with community health workers which allowed us to increase local involvement in delivering the intervention.
We developed virtual ‘social contact’ videos where people living with dementia and their care partners from the community shared personal stories of dementia, their experiences of stigma and how they confront it. We sought further feedback on practical details around format, delivery, numbers to refine the intervention.
Overview of Kenya anti-stigma intervention components
Pilot Study Findings: Changes in stigma related dementia knowledge
Within the pilot study we measured attitudes towards dementia before and one-month after the intervention was delivered to the general public. This was complemented by qualitative interviews.
Amongst the general public who participated in the pilot study, the findings highlighted improved knowledge and attitudes towards people living with dementia and their carers.
Click graph to view full version
Pilot Study Findings: Changes in attitudes and prejudice towards people living with dementia
Click graph to view full version
Pilot Study Findings
These findings were supported by qualitative feedback, demonstrating that intervention was successful in improving knowledge and moving away from stigmatising beliefs:
What struck me most about dementia is that it’s a disease. Over time we believed it wasn’t a disease. [Initially] We thought people had been bewitched or were simply foolish.
I learnt [from the intervention] that, I can trust this person to help me [in certain activities]. For instance, when preparing food, he could help me sort out bad maize, peas, from the good ones
We used to think that people living with dementia are facing consequences for their evil deeds but now I know that it's not their wish.
After the training, I learnt that I need to know from him what he would prefer to eat. So now life is not as hard as it was before. It’s now easier to care and support him.
References
Alzheimer’s Disease International. (2017). Dementia in sub-Saharan Africa: Challenges and opportunities.
GBD 2019 Dementia Forecasting Collaborators. (2022). Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: An analysis for the Global Burden of Disease Study 2019. The Lancet. Public Health, 7(2), e105.
https://doi.org/10.1016/S2468-2667(21)00249-8
United Nations. (2017). World Population Ageing 2017—Highlights (ST/ESA/SER.A/397). Department of Economic and Social Affairs Population Division.
Case study on reducing stigma
... in Brazil
Context of dementia in Brazil
Brazil is an upper-middle-income-country with a total population of approximately 214 million people (Brazilian Institute of Geography and Statistics, 2022; The World Bank, 2020), of which 57% are women, and almost 16% are aged 60 and over (Brazilian Institute of Geography and Statistics, 2019). The country is divided into five geographical regions (North, South, Northeast, Southeast, and Mid-west) and is diverse in terms of culture and socioeconomic profiles. Population ageing in Brazil is occurring at one of the fastest rates worldwide, resulting in an increased number of people living with chronic diseases, including dementia (Melo et al., 2020; The World Bank, 2011). Estimates from 2019 reveal 1.8 million people living with dementia in the country (GBD, 2022).
Stigma and discrimination toward people living with dementia and their carers are present in Brazil at various levels, including among healthcare professionals (Oliveira et al., 2021) in addition to members of the public and families of people living with dementia (Oliveira et al., 2021).
As a result, people living with dementia are often socially isolated, and carers are often impacted. Increasing knowledge and awareness in dementia among people in Brazil is necessary. Therefore, targeted anti-stigma efforts could help reduce negative views toward dementia.
Brazilian dementia anti-stigma intervention
Aim
To improve knowledge and attitudes, and reduce stigma and discrimination related to dementia among community health workers.
Why community health workers?
Primary care services are the first point of access for people experiencing any physical or mental health problem in Brazil. In most regions of the country, Primary Care Units are part of a program (Family Health Strategy) of which community health workers are a key part of the health teams. These professionals are responsible for health promotion and disease prevention activities, and as such, community health workers directly help to scale access to primary health care nationally.
Most of the training offered to community health workers in Brazil is focused on the control of communicable diseases and non-communicable physical diseases such as diabetes and hypertension with less focus on mental health needs.
Intervention
The intervention consists of three group sessions, held on three consecutive days, lasting three hours each, involving all participating community health workers from each Primary Care Unit in each session (total = 9 hours over three days for all community health workers).
The intervention uses audio-visual and printed materials, containing for example, videos of people with dementia and carers sharing their personal experiences, reflexive activities, group discussion, and Power Point® presentations.
One focus of the intervention is to experience how it would be like to live with dementia.
DAY 1 Building knowledge and changing beliefs: starting the transformation process
The first session begins with a post-it session. Community health workers are asked to reflect on their beliefs and doubts, as well as those of their colleagues and to answer the following questions:
- Dementia occurs due to ...
- People living with dementia are...
- How do you think people living with dementia should be treated by other people?
Then, we go through responses together as a group, use further exercises to develop rapport , and finally ask participants to consider:
“Have you ever reflected on what your life would be like if you received a diagnosis of dementia?”
DAY 2 Breaking stereotypes and building a new view
We present educational/theoretical content on stigma, discrimination, stereotype, and language in order to sensitise the community health workers about how other people's thoughts, feelings, attitudes, and behaviours can affect people living with dementia. Then, we show short testimonial videos of people living with dementia, and at the end, we conduct a dynamic discussion to help participants develop empathy about everyday issues experienced by people living with dementia.
DAY 3 Integrate social contact element and discuss ways of relating with others, acting, and feeling
We also share narratives about the daily lives of people living with dementia and caregivers, based on real-life situations.
We teach the community health workers positive verbal and non-verbal communication strategies, and stimulate reflections and debates on how to apply these communication strategies in their professional environment. Community health workers are requested to try to identify inappropriate speech and behaviours, and think of possibilities of how each situation could be positively changed by applying the positive communication strategies previously learned.
Closure and reflections on how anti-stigma messages could be integrated into their clinical practice
Group discussion/reflection about how community health workers could improve their practice to provide better care to people living with dementia and their families.
Note: A link to the manual and intervention protocol can be found here. https://bmjopen.bmj.com/content/12/7/e060033 We are currently evaluating the intervention and will update this resource with the results once they are ready.
Brazilian Institute of Geography and Statistics. (2020). Nova proposta de classificação territorial mostra um Brasil menos urbano | Agência de Notícias. Agência de Notícias - IBGE. https://agenciadenoticias.ibge.gov.br/agencia-noticias/2012-agencia-de-noticias/noticias/15007-nova-proposta-de-classificacao-territorial-mostra-um-brasil-menos-urbano
Brazilian Institute of Geography and Statistics. (2022). IBGE | Projeção da população. https://www.ibge.gov.br/apps/populacao/projecao/box_popclock.php
Brazilian Institute of Geography and Statistics, B. (2019). Pesquisa Nacional de Saúde 2019: Ciclos de Vida. https://biblioteca.ibge.gov.br/visualizacao/livros/liv101846.pdf
Brazilian Ministry of Health. (2013). Pesquisa Nacional de Saúde 2013: Acesso e Uitlização dos Serviços de Saúde, Acidentes e Violências. https://biblioteca.ibge.gov.br/visualizacao/livros/liv94074.pdf
Brazilian Ministry of Health. (2019). Sistema Único de Saúde (SUS): Estrutura, principios e como funciona.
http://www.saude.gov.br/sistema-unico-de-saude
GBD. (2022). Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: An analysis for the Global Burden of Disease Study 2019. The Lancet Public Health, 0(0). https://doi.org/10.1016/S2468-2667(21)00249-8
Melo, S. C. de, Champs, A. P. S., Goulart, R. F., Malta, D. C., & Passos, V. M. de A. (2020). Dementias in Brazil: Increasing burden in the 2000–2016 period. Estimates from the Global Burden of Disease Study 2016. Arquivos de Neuro-Psiquiatria, 78, 762–771. https://doi.org/10.1590/0004-282X20200059
Oliveira, D., Mata, F. A. F. D., Mateus, E., Musyimi, C. W., Farina, N., Ferri, C. P., & Evans-Lacko, S. (2021). Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: Qualitative study. Ageing & Society, 1–22. https://doi.org/10.1017/S0144686X21000660
The World Bank. (2011). Growing old in an older Brazil. http://documents1.worldbank.org/curated/ru/906761468226151861/pdf/644410PUB00Gro00ID0188020BOX361537B.pdf
The World Bank. (2020). Data for Brazil, Upper middle income country. https://data.worldbank.org/?locations=BR-XT
Case study on stigma related knowledge and attitudes...
in Indonesia
Within Stride we ran a large survey in Indonesia. We randomly sampled 2,110 older adults within Jakarta and North Sumatra. We also surveyed a family member, friend or someone that knew the older adult well. As a result, we have data from nearly 4,220 adults living in Indonesia related to dementia knowledge and attitudes, the largest of its kind. Here we will report on four pertinent items.
An overwhelming majority of participants (n=3,780, 89.6%) agreed or strongly agreed with the statement that “we need to be more tolerant towards people with dementia in our society”, with less than 5% disagreeing to the statement (n=194).
Just over half of participants felt that people with dementia can enjoy life (n=2,305, 54.6% agree or strongly agree). Slightly more concerningly, just over half of participants (n= 2,115; 50.1%) felt that people with dementia could not make a positive contribution to society.
A key consequence of stigma is that people may ultimately hide their diagnosis from others. Just over a quarter said they would hide their diagnosis (n=1,069).
These preliminary findings highlight that the majority of Indonesians within our sample held attitudes towards dementia that would be considered positive. There was particularly strong view that people should be more tolerant towards those with dementia in Indonesian society, which is promising.
Importantly, for some items there was a sizeable minority that held more stigmatising views that could result in people hiding their diagnosis or adopting care behaviours that do not seek to improve the lives of people with dementia. Whilst a single item (“I do not think people with dementia can make a positive contribution to society”) indicates that some prejudice and stereotypes might be more widespread.
Further analysis is needed to better contextualise these findings, but collection of population level attitude data allows for us to identify potentially stigmatising attitudes and beliefs, whilst providing an opportunity to understand who and why certain groups might hold them.
Click graph to view full sizew
Working with people with lived experience
Including people living with dementia and their families is essential
There is no one way to include people living with dementia in your work. Including people living with dementia and their families is undoubtedly an essential component of doing anti-stigma work: we need to understand what is most valued by people living with dementia and their vision and aspiration for social change in order to make meaningful impact. On one hand, this means understanding experiences of unfair treatment and the actions and behaviours which can be most hurtful.
On the other hand, we need information about what kinds of actions are most empowering and what resources and support are needed to combat stigma and to live one’s best life. Thus, it is essential that people living with dementia are at the heart of the work to ensure the programme is meaningful for them.
The vision for how we should reduce stigma and empower people living with dementia, however, differs between individuals and according to their culture and context. As such, we cannot provide a simple one size fits all approach for doing this work. Instead, we provide a set of principles and recommendations for working together with people with lived experience, making sure that people living with dementia are central to the vision of any anti-stigma programme and activities.
1 Activities and opportunities should be open to all.
People with lived experience are a diverse group. In the spirit of reducing stigma, it is important to remember that activities and opportunities should be open to all. Some people may face more barriers to being involved. Sometimes this is related to the stage of their dementia, but accessibility may also be limited because of gender, ethnicity, socio-economic group, sexual orientation, literacy, age or other factors.
When starting a new anti-stigma programme, it is common for levels of involvement to be small at the beginning. If there has not been much activity in a community, there may be only a few people who have previously spoken about their condition. Indeed, it may not be commonplace at all to speak openly about one’s dementia and so we need to be grateful for the first people that step forward to share their stories.
Nonetheless, we also need to be cognisant from the beginning when setting up any programme of the diverse groups affected by dementia and to have a plan and guidelines for recruiting with diversity in mind and getting broad input, even if this sometimes happens later in the programme. This may, for example, require understanding barriers for different groups to be involved and then brainstorming around how to resolve these.
2 Recognise that advocacy opportunities for people living with dementia and their care partners can take many forms
Advocacy among people living with dementia is not only about public speaking. Indeed it is important to provide a variety of opportunities. Participation can be improved by accommodating and supporting people living with dementia of different abilities and preferences. For example, individuals with language impairment may opt for artwork and other visual mediums to communicate their messages while others may prefer to use poetry, music or to deliver their message alone or in a group or with support from, for example, care partners.
3 Discussing one’s own experience of living with dementia is a personal choice
We need courageous people to come forward to share their stories of living with dementia to effectively fight stigma. Indeed, sharing one’s story may help people feel unburdened because they no longer have to live in secrecy. There is nothing shameful about having dementia, however, it should still be the person’s choice whether they share their experiences. Thus, people living with dementia need to be in control of whether they share their story, but also how, to whom, and the kinds of details made public. The costs and benefits of sharing one’s story may be different depending on where one lives, who they speak with and the details that are disclosed. People may want to share their stories in different ways. Some people may not be ready to share openly and would prefer to maintain some anonymity. Thus, it is important to take the time to provide people support in this decision-making process before disclosing their story, and throughout their journey.
4 Help individuals to weigh potential risks and benefits of talking about their personal experience of living with dementia and provide support and security for those who come forward
Of course, anti-stigma programmes strive to create a culture which is open and supportive to people living with dementia so that they do not face negative consequences for disclosing one’s condition. Telling a personal story of one’s own experience in a community where there is little understanding and support for people living with dementia or where it is common to stigmatise people living with dementia; however, may carry some risks. Indeed, the pioneers who lead movements often require a great deal of courage to advance social change. Thus, it is important to support people who want to come forward to help them to weigh the risks and benefits of sharing their story publicly and to think about how they can do this in a safe way where they feel comfortable.
Many people who share their story also highlight benefits including meeting peers (both people living with dementia and their carers) in addition to reducing internalised stigma and shame.
This means developing consent forms which are reviewed together carefully and which detail these issues in a way that is clear and comprehensible. It is also important to identify different types of supports available. This may include local organisations and online materials but should also include a named person from the team who can be contacted when support is needed.
This information should be provided at the beginning; but in addition to passively providing this material it is also important to actively reach out and check in with people to see how they are doing and make sure they are safe and secure.
5 Opportunities to develop skills and experience
People living with dementia may have different strengths, values and goals of what they want to achieve and contribute toward in an anti-stigma programme. Thus it is important to work together with people living with dementia to determine the level of involvement that they aspire to and where they want to focus their efforts.
Some people may prefer to have a behind the scenes role while others feel more comfortable and have experience in speaking out and may then have a more public facing role. Moreover, some people may want to share their story publicly, but need additional support to realise that aim. This might require providing training and support so that they can take on the activity and become more actively involved.
The programme should focus on empowering and supporting people to address their goals within the anti-stigma programme and identify relevant opportunities, training and support to help people become involved.
6 Access to advocacy materials
It is important to have access materials widely accessible for different audiences. Although stigma is a global issue, most advocacy materials are available only in English and originate from high-income countries.
This is despite the fact that 70% of all people living with dementia are residing in low- and middle-income countries. Translation to other languages could help reach a wider audience.
Also, although stigma to an extent is a universal experience, differences in experiences of discrimination may also be related to social, cultural and political contexts and cultural adaptation and contextualisation could help to make material and messages more appropriate and acceptable for different settings.
Local Alzheimer’s and dementia associations can be potential sources of such materials. Our collaborator Alzheimer’s Disease International provides information about local organisations (www.alzint.org)
7 Compensate people for their time and expertise
As we have discussed, including people living with dementia is essential for any anti-stigma programme and thus when planning activities, it is important to consider how we can value their contributions.
This involves planning ahead for the types of activities to be carried out and how this balances with the resources which are available. This also means developing guidelines around how to handle compensation including payment for their contribution (including the amount and how it will be provided), reimbursement for expenses and how their involvement will be acknowledged.
Sometimes, it is also appropriate to provide other benefits such as training, social opportunities, certificates, chances to present and share programme lessons. These processes for compensation should be clearly communicated to those who are considering being involved.
Moreover, the value of the experience and expertise of people living with dementia and carers needs to be communicated clearly to those involved in delivering the anti-stigma programmes early on and throughout the programme.
Social contact and virtual social contact
... Videos from each country
What is social contact?
Social contact is direct and personal contact between people from the general public and people from stigmatised groups, such as people living with dementia and their care partners. This strategy is one of the most effective methods to reduce stigma and discrimination and several studies provide evidence for this approach.1,2
Social contact may work via a virtuous cycle whereby people talking openly about their dementia reduces myths and misconceptions, leading to a reduction in societal stigma, and hence a more supportive environment for more people to disclose their dementia and further break down stigma and discrimination. Indeed social contact tends to be more memorable and long lasting than educational type interventions.
Research suggests that over time people tend to forget facts and figures while the effects of personal stories shared by people with lived experience make long lasting impacts and change in people.
How can we use social contact to reduce stigma?
To be effective social contact needs to be more than just putting people together. It should facilitate meaningful opportunities for people living with dementia and their carers to share their experience, create conversations and change minds. The quality of the social contact is more important than the quantity. There are five factors which can facilitate meaningful social contact and which can increase intimacy and potential for friendship while reducing fear3. These include:
- Equal status between groups (of people with and without dementia)
- Working towards a common goal
- Intergroup cooperation
- Support of authorities, law or custom
- Friendship potential
Social contact events or activities should aim to reinforce these five elements.
"Together we can stop stigma. Nothing about us without us" Emily Ong
As one’s dementia status is not a visibly apparent characteristic, disclosure or sharing one’s condition is a key factor in any social contact event. Thus, it is also important to facilitate a positive environment which supports the disclosure of one’s dementia and to support people throughout the process from how and what to share but also to make sure they receive support during and after the event and to make sure they are treated with respect.
Social contact may be delivered through live in person events and activities or through online virtual events, film or videos. Although in-person social contact is the most effective method, it may not always be feasible. There is evidence, however, that social contact can also be delivered through virtual events, film or video interviews4. They may also integrate leisure type activities that require teamwork and collaboration among people living with dementia and the general public or other target groups.
There are also other creative examples of running live events such as Human Libraries where people with stigmatised identities can be ‘checked out’ and use conversation and personal experience to disconfirm myths and stereotypes and even facilitate friendship. (https://humanlibrary.org/) Whichever activity is used, it is important that it facilitates dialogue, sharing lived experience and conversation.
References:
1 Al Ramiah A, Hewstone M. Intergroup contact as a tool for reducing, resolving, and preventing intergroup conflict: evidence, limitations, and potential. Am Psychol. 2013 Oct;68(7):527-42. doi: 10.1037/a0032603. PMID: 24128316.
2 National Academies of Sciences, Engineering, and Medicine. (2016). Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442
3 Brown, R., & Hewstone, M. (2005). An integrative theory of intergroup contact. Advances in Experimental Social Psychology, 37,255–343. doi:10.1016/S0065-2601(05)37005-5
4 Janoušková, M., Tušková, E., Weissová, A., Trančík, P., Pasz, J., Evans-Lacko, S., & Winkler, P. (2017). Can video interventions be used to effectively destigmatize mental illness among young people? A systematic review. European Psychiatry, 41(1), 1-9. doi:10.1016/j.eurpsy.2016.09.008
Here we provide video narratives of people living with dementia and carers from seven low and middle income countries. These are examples of virtual contact videos which can be used to reduce stigma or adapted to your own community:
Brazil
“I have this joy of my life. I am still as I am”
Indonesia
“Although I have dementia, I do daily activities, such as go to the office, travel with family, go to the mall, or visit relatives. These are things that lift up my mood. Living with dementia is not the end of everything”
India
“Stigma is not only among friends and social community. Even in hospitals... I have noticed many times they are treated as an object, not as an individual.”
Kenya
"It is a major issue in the community that they are neglected. Ageing is also stigmatised."
Jamaica
“Training and the right skill set is one thing but having the right attitude is another thing”
Jamaica
“This [dementia] is not a death sentence... However, you play a very important role in ensuring that this happens.”
Jamaica
"This [dementia] is not a death sentence. People can live as long as ever...however, you play a very important role in ensuring that this happens. "
South Africa
“The people [living with dementia] need to be loved not to be cared for. And then you need to listen to them."
Checklist to plan social contact events
Click chart to view larger version
Selecting a target audience
Selecting a target audience
Anti-stigma programmes should focus on improving the knowledge, attitudes and behaviours of the key target audiences that would make the most difference to the lives of people living with dementia. Of course, people living with dementia need to be at the heart of any anti-stigma initiative. Involvement may include ongoing dialogue and participation among a core group but also opportunities to engage in one-off activities. When identifying a target it is important to reflect both on questions of who and what need to change.
In relation to who, anti-stigma initiatives may focus on, for example, health and social care professionals, the media, policymakers and religious or community leaders; but, it also requires working together with families and people in the more immediate lives of people living with dementia and their care partners to help them to provide understanding and support and reduce the prejudice and discriminatory behaviours that matter most. People who exercise some power or authority about the life decisions and opportunities faced by people living with dementia should be prioritised as target audiences.
In relation to what, it is important to think about the behaviours and attitudes which are most harmful or which are most unfair in restricting the opportunities and wellbeing of people living with dementia. Is there some underlying misinformation, prejudice or stereotypes which contribute to this unfair treatment? Once these are identified it is important to work together with the target audience to develop change strategies which are appropriate for the context, use comprehensible language and are delivered in a way that will reach the target audience.
A collaborative approach between people living with dementia and members of the target audience may allow members of the target audience to take responsibility to implement changes.
Using a dialogue format can be helpful so as not to be too prescriptive about how the change happens and allowing for different and multiple approaches which are tailored to fit the context and audience.
Finally, it is useful to keep in mind that an approach which focuses on shame can backfire as people may feel they are being told how to act and in some cases this can embolden negative behaviour. As discussed throughout this toolkit, change strategies need to integrate social contact and sharing of personal stories to communicate messages. In some cases, there may be members of the target audience (for example health professionals) who have dementia and who are able to share their personal experience from an insider perspective.
Below is a framework summarising factors to consider when identifying targets
Consult with people living with dementia to identify targets –considerations should address who (e.g., health and social care professionals) and what behaviour(s) and attitude(s) need to change
Balance reaching out to influential groups and authority figures and also those who come into frequent contact with people living with dementia but who also hold power
Identify allies and partners who can help to work with the target group. If, for example, one chooses to target health professionals, it can be important to work with partners who are also health professionals to effectively connect with the target group
Messages should be delivered by people with lived experience
Collaborating with allies or ‘insiders’ of the target group can help to shape a change strategy which reaches them. This includes using language or approaches they understand and are comfortable with
Consider messages which are not overly prescriptive or which rely on shaming the stigmatiser as these can sometimes backfire when people feel they are being told what to think. Collaborating with partners can increase ownership and allow for deeper reflection of more meaningful change
Which target audience should be prioritised to reduce stigma against people living with dementia?
- health and social care professionals
- the media
- policymakers
- religious or other community leaders
- families
Research papers and additional advocacy resources on stigma and dementia
Research papers on stigma and dementia
