Breaking down the stigma of Alzheimer’s
For World Alzheimer’s Month 2018, we’re looking into the stigma surrounding the disease and the people working hard to break it down
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 and 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, comprised of over 350 local alliances around the country who connect, share best practice, and take action in their communities.
One local alliance leader, Gina Awad, founder of the Exeter DAA in Devon, has recently been awarded with a British Empire Medal in the Queen’s Birthday Honours List for her efforts to inspire businesses and organisations to work towards a more dementia friendly city. Gina, who became passionate about dementia care while studying for her BSC in Health and Social Care with the Open University, started the alliance to fill the gap in information transmission between dementia services and the people who need them. Inspired by her studies, she started leading the Alzheimer’s Society’s Dementia Friend sessions, and it was during these she realised that although there were resources available to people, information about them wasn’t readily accessible. Never one to rest on her laurels, she started looking for solutions to this communication issue, discovered the DAA and after finding that Exeter didn’t have an alliance of its own, built it from the ground up, on a voluntary
basis – though these days has thankfully secured temporary funding to pay her for 14 hours a week, a fraction of the time she actually spends on the work.
In addition to providing a vital source of information, Gina is also on a mission to combat stigma. ‘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 a 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 play a supporting role in their friend’s dementia journey, and leaves the person living with the disease isolated – 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.
It’s a vital message, and one we can only spread by talking about it and engaging with organisations like the DAA, through which Gina has created palpable culture change in her city. In addition to providing information, the Exeter DAA partners with local businesses to empower them to foster a more inclusive culture. Partners are asked to make public on the Exeter DAA’S website how they are working to be better – perhaps by including Dementia Friend information sessions in basic induction for new employees, encouraging an employee to lead within an organisation and become a Dementia Champion or asking employees to wear their Dementia Friend badges at all times so they are clearly identifiable. Flexible appointment timings and signage are also considered where appropriate. It’s a testament to her progress that in the city where it was once hard to obtain organisational buy in, businesses are now keen to join the alliance and contribute to this growing social action movement.
We have a long way to go, but culture is gradually shifting toward inclusivity.
‘The fear surrounding the condition leaves people too afraid to play a supporting role in their friend’s dementia journey’
Gina Awad, founder of the Exeter DAA in Devon
Barbara Windsor revealed this year that she is living with Alzheimer’s