For World Alzheimer’s Month 2018, we’re looking into the stigma surrounding the disease and the people working hard to break it down
World Alzheimer’s Month 2018
September is World Alzheimer’s Month, an annual event in which campaigners from around the world raise awareness and challenge the stigma that surrounds the disease. In the UK, a need for education, misguided stereotyping and media shock tactics all play a role in the stigma people living with dementia experience.
Though there is much work still to be done, there are organisations working hard on the ground to create a more inclusive society. The national Dementia Action Alliance (DAA) is one such group, working in collaboration with other national organisations like Age UK as well as people living with dementia and their carers to promote best practice, educate and campaign for better understanding of the disease. In addition to working on a national scale, the DAA also operate locally through encouraging the formation of Local Dementia Action Alliances (LDAAs) who commit to fostering the values of the DAA on a local level.
Each local branch is completely independent and unique, responding to the needs of their particular community – whether that’s a small village or an entire city. This might mean partnering with businesses looking to become dementia-friendly much like the national Alliance do, or it might function more as a signposting resource for local people with dementia and their carers looking to access services and support.
Both the DAA and its local branches also work on a variety of awareness-raising campaigns dedicated to improving the health and social care outcomes for people with dementia, but also the stigma they so often face. Despite the prevalence of dementia – the DAA’s website states that it currently affects one in 14 people – the stigma around the disease and the misconceptions born from that continue to be huge and measureable by those working on the ground. Gina Awad, founder of the LDAA in Exeter, Devon, can attest to this. In her work with her local alliance she has met many people who feel isolated by the misconceptions
surrounding dementia. It’s a problem, she believes, with only one solution.
‘The way to reduce that stigma is to talk about it. Interestingly, because dementia relates to the brain and the mind, people are frightened of it as they are frightened of mental health,’ she says. People are often fearful about sharing their diagnosis because they don’t want to be judged and viewed as less of a person. Gina told me that she has met many people living with the disease who shared with her that after they told their friends about their diagnosis, many of them simply stopped calling. Again, Gina puts this response down to fear. ‘It’s often not because the friends don’t care, but because they don’t know how to deal with it. They automatically have this perception through lack of understanding and knowledge that if a person has a diagnosis of dementia, what’s the point in seeing them because they won’t remember who you are. There is so much more to dementia than memory loss.’ The fear surrounding the condition leaves people too afraid to
‘The fear surrounding the condition leaves people too afraid to play a supporting role in their friend’s dementia journey’
play a supporting role in their friend’s dementia journey, and leaves the person living with the disease isolated – really the worst situation for their health and wellbeing.
Media representation usually doesn’t help. Gina emphasised the importance of language and how it informs the tone of the dementia conversation. Where journalists choose to describe a person as ‘suffering’ from dementia, or refer to it as a ‘terrible disease’, it only serves to build fear, stunting meaningful conversation, further isolating people living with it and even preventing them from getting a diagnosis in the first place, and therefore access to the right help and therapeutic support. Choosing language carefully isn’t about ignoring the realities of the illness, it’s about, instead, making clear that dementia is more than simply an ending – just ask anyone living with it.
How we talk about dementia in the media and amongst ourselves influences the perception of it, but also how people living with it view themselves. In a effort to combat the language of negativity with which dementia is described in the media, the DAA, in partnership with the Dementia Engagement and Empowerment Project (DEEP) has published Dementia Words Matter, a guide written by people with dementia detailing the language choices that are hurtful to the community – a handy guide for journalists and the general public on how to talk about dementia in an accurate and respectful way.
Stigma leads to significantly worse health outcomes for people living with dementia, and it is the responsibility of communities to work together in partnership with the DAA, engage in its campaigns and with the work of its local branches to create a dementiafriendly environment.
For more information about the DAA and to find (or start!) your local Alliance visit dementiaaction.org.uk
Barbara Windsor revealed this year that she is living with Alzheimer’s