Experience of stigma and discrimination from different STRiDE countries

Stigma and discrimination – common themes

Myths and misperceptions

Dehumanisation and depersonalisation

Social exclusion and being shunned

Loss of status and responsibilities

Concealment and shame

Unfair treatment in healthcare

Problem minimisation

Listen to real life experiences from people living in STRiDE countries

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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