Real stories

How people experience and cope with dementia stigma

People’s experiences of dementia vary. But often, the stories we hear include experiences of discrimination. This can be a result of dementia stigma, where one person has a negative attitude towards another person.

This can result in a person with dementia being treated differently in their day-to-day life, and can affect how people approach diagnosis and treatment.

it can lead to people with dementia internalising those feelings and stigmatising themselves, undermining their self worth and confidence.

According to a survey we ran in 2025, 

42% of people with dementia felt ashamed or stigmatised about living with symptoms

Empowering through sharing

Sharing the voices of people affected by dementia is an important way of raising awareness. By hearing directly from people living with dementia, as well as carers, more people can have a better understanding of the condition.

1. Dementia stigma on public transport

This first experience was shared by someone who was diagnosed with dementia at just 51 years old. She told us about her experience of being discriminated against on a train:

"I’m living with dementia after being diagnosed last year. My family were surprised by my diagnosis, but they’ve been incredibly supportive.

However, I’ve experienced stigma while out in public, most recently on a train. I was travelling to London with a friend, and I suggested sitting in the disabled-access section, as it’s easier for me to move around in (I can struggle with my balance).

A woman sitting in the seats refused to move when I asked, stating, "I’m not moving. You look 20 years younger than me. You don’t look disabled."

She continued to refuse, so we moved. We had to laugh about it in the end!

Most people I come across are very understanding and patient. I carry a card with me to show I have a dementia diagnosis, but I shouldn’t have to prove myself.

Just because I don’t look it, doesn’t mean I don’t have a disability."

You can find out more about our helpcards here. They can make it easier for people with dementia or memory problems to get support when they’re out in the community.

2. Dementia stigma in hospital

If it takes place within a health or social service setting, stigma can be life-threatening:

"I've been admitted to hospital a couple of times since my diagnosis. I contracted sepsis during one stay, which nearly killed me. Yet, as soon as you're in, you become a patient - a non-person.

Decisions are made for you because, on a piece of paper somewhere, it says that I have dementia.

I'm treated as though nothing I have to say about myself would be taken into account.

Nobody listened. Stigma can be life-threatening.

The fact that I've got a disorder of the brain shouldn't be a passport to be disregarded. It's a life and death issue."

3. Dementia stigma in public place

Encountering insensitive reactions or behaviour in public can be challenging. Often, such responses come from a lack of understanding about dementia.

"After I was diagnosed, friends disappeared. This made me feel very down.

My sister heard about our local dementia support centre and encouraged me to try it. Now, I go all the time - I love it! 

I used to work in the travel industry so I am used to helping people, and that's what I do now when I visit the centre. I welcome people in, let them know they can talk about anything.

Sometimes when I socialise in town, enjoying a cup of tea, I can forget things and forget what I was saying.

You see people looking, and I know they’re thinking, "What's wrong with her?" If they stare I ask, "Do you want what I've got? I've got dementia, I don't think you'd like it." 

They quickly apologise and I can then carry on my conversation.

The public need to be told more about what we go through, and how dementia affects us. I'm happy to talk and tell them.

4. Dementia stigma at work and with friends

This experience was shared with us by someone caring for her husband, who is living with dementia. Here, she explains how his friends and colleagues stopped getting in touch after his diagnosis: 

"People don’t believe me when I tell them my husband has dementia, as he is 60 years old and physically fit. People think he’s supposed to be sitting and rocking in a chair, not up and about.

We haven't had any contact with friends or his work colleagues since his dementia diagnosis, despite working at the same company for the last 32 years.

He was also part of a builders’ merchants livery and was a Freemason, but we haven’t heard from either organisation. It hurts me that they would treat him this way.

5. Dementia stigma prevents diagnosis

A member from our online dementia support community shared their story with us. She cares for her mother, who lives in sheltered housing. Stigma affected the diagnosis process, as signs and symptoms of dementia were mistaken for other conditions: 

"Those of us who have experienced dementia can, with hindsight, look back and see the signs, and often realise what is going on when others just don't believe it could be.

There seems to be so much stigma around dementia, but with the ageing population, a lot more people are going to get it.

I have several friends who were convinced their parents didn't have dementia and were relieved when their GP diagnosed depression. Now though, they readily admit it was dementia all along.