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Tackling the stigma of dementia: ‘After I was diagnosed, friends disappeared.’

Some people affected by dementia have felt discriminated against. Here are five people’s first-hand experiences with the stigma of dementia.

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 for people with dementia, more people can have a better understanding of the condition.

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

The following are just some of the experiences shared with us. They show how the stigma of dementia can affect so many, and spread further than just the person living with dementia.

People with dementia share their experiences

Isabelle's story

Isabelle, who was diagnosed with dementia last year at just 51 years old, told us about her experience of being discriminated against on a train:

‘I’m living with dementia after being diagnosed in 2018. 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.’

Larry's story

Larry shared his experience of facing discrimination in hospital, and how 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 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.'

Val's story

Val is living with dementia. She told us about how she copes with comments people make in public, and how her previous work experience helps when she meets people who have just been diagnosed.

‘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.

When I'm out in town, enjoying a cup of tea, I can forget things and 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.'

Carers of people with dementia share their experiences

Terry's story

Terry is caring for her husband, who is living with dementia. Here, she explains how his friends and colleagues stopped getting into contact 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.’ 

'Jugglingmum'

Jugglingmum is a member from our online community, Dementia Talking Point. She cares for her mother, who lives in sheltered housing. Here, Jugglingmum tells us about how stigma can affect the diagnosis process, as signs and symptoms of dementia can be 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.

'With the ageing population, a lot more people will get it. I have several friends who were convinced their parents didn't have dementia and were relieved when their GP diagnosed depression, who now readily admit it was dementia all along.’ 

Share your story with us

We're always looking for real stories to share on our blog. Alternatively, you can also share your experience of dementia with us, and get involved in our press and campaigning work. Find out more about both options.

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