Intro
For the last 20 years, the Scottish Dementia Working Group has been campaigning to raise awareness of dementia and to challenge stigma surrounding the condition.
During lockdown, the group started writing a series of blogs with members sharing their lived experiences of diagnosis and living well with dementia.
For Dementia Awareness Week, we asked them how they felt about the stigma that they can face and the language that is often used when talking about dementia.
Margaret
On stigma
Margaret was diagnosed in 2016 with frontotemporal dementia at the age of 51. She is an active member of both the SDWG and the EWGPWD (European Working Group for People With Dementia)
“I experienced an upsetting end to my employment, and I am passionate about improving the working environment for people living with dementia, this starts by educating employers and challenging stigma. I have since regained my sense of self- worth and feel able to contribute and raise awareness of the varying types of dementia. Dementia is a brain disease not a mental illness. See the person not the disease." – Margaret M
Kenny
Kenny was diagnosed with Vascular Dementia in 2017 at the age of 50. He is particularly passionate about raising awareness of younger onset dementia.
“Having a diagnosis of dementia is not the end, it has opened up opportunities and is a place to meet people and talk about your diagnosis, I realised I wasn’t different.” - Kenny
Margaret N
Margaret was diagnosed with younger onset Alzheimer's disease at the age of 56. She has helped to educate others, including trainee nurses, in how to support people with dementia.
“SDWG members understand each other very well, empathise with each other and if one of us is having a down day we support each other.”
"Focus and what people can do, not what they can’t do. I have made friends with my dementia.” – Margaret N
Tony
Tony was diagnosed with Vascular Dementia in 2018 at the age of 77. He had a successful career in politics and is a passionate campaigner.
"Through campaigning for equality and inclusion, we can challenge the stigma around dementia, there are over 90,000 people living with a diagnosis of dementia in Scotland and we know that many people do not access services or are part of a group like SDWG- We need to raise awareness and show that having a diagnosis of dementia does not mean your life is over." - Tony
On language
On language
What’s in a word? Well, quite a lot actually. The language we use when talking about someone can have a profound impact on them. Whether it’s well-meaning family or friends, or even an article in the newspaper or on TV, we know that people can struggle with how to talk about dementia. Below are some of the SDWG member's thoughts on the language used around dementia and how it makes them feel.
“Articles should refer to people ‘living with the condition’ rather than ‘suffering with dementia’ or using the term dementia sufferers.”
“When people say that dementia is ‘preventable’ it’s important that people with dementia don’t feel like they are being ‘blamed’ for their condition.”
“Using words like ‘old’ or ‘frailty’ – the image of people with dementia is generally that of an older person, but there are many younger people living with dementia and it’s important that people know that.”
“I hate it when people use generalised statements about people with dementia – we are all different.”
“I would like people to stop saying ‘it’s just memory problems’ when talking about dementia. There are many more symptoms.”