More than just memory: Telling the story of Dementia

January 17, 2018

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With two out of three people in New Zealand affected either directly or indirectly by dementia, you’d think that it might be a more common conversation topic.  Unfortunately, there’s still a lot of stigma surrounding dementia and sometimes it can seem like you can hear only crickets when you mention the condition! That’s exactly what Dementia Auckland is trying to change. Their method? The power of stories.

Spreading the word far and wide

When it comes to working with Dementia Auckland, us Inkers have been on the scene for a while. Although Dementia Auckland’s website, Mind Matters newsletter, and Facebook page have been operating since before we came into the picture, telling stories about dementia hasn’t always been an easy task for this not-for-profit.

For starters, Dementia Auckland’s target audience is super broad – dementia doesn’t just affect the person with the diagnosis, it also has an impact on the lives of their carers, family, colleagues, and wider circle of friends. With different communications tasks being assigned to different Dementia Auckland staff members, the stories that were being shared across the different media outlets weren’t always regular. When their hardworking staff members did squeeze in the time to work on telling stories, they were lacking an overarching message to tie the stories together.

Consistent communications

What Dementia Auckland needed was consistency and, since pulling in Intelligent Ink as their communications team about four years ago, we’ve been working on consistently telling their story.

With only 45% of their funding provided by District Health Boards, Dementia Auckland needs to make up the other 55% through their fundraising efforts – which are only successful if people know what they’re about, what they can do to help, and that their support is appreciated.

Because the most amazing impact that the organisation has happens at the ‘front lines’, Dementia Auckland recruited the key workers and socialisation team to help identify potential stories and, each month at their professional development day, we pick their brains for any cool stuff that’s been happening with clients. Stories can range from carers sharing their experiences looking after people with dementia, to volunteers talking about why they like to support Dementia Auckland, to staff members sharing their personal journeys.

But why tell these stories? They give people insight into the real struggles that people with dementia and their carers face, while also demonstrating the impact of what Dementia Auckland does. Sharing them consistently with supporters of the organisation keeps those supporters connected and reminds them why they give, and sharing those stories with a wider audience enables Dementia Auckland to build an even greater support network.

Throughout everything, a key priority for Dementia Auckland (and hence, us as their communications team) is consistently articulating the message that’s behind all the work they do for people in New Zealand’s biggest city – that dementia doesn’t mean that you can’t still live a fulfilling life.

For those wondering whether stories can make a difference – the results seen by Dementia Auckland say yes. With regular posts carrying a clear message throughout, more and more people are coming to find Dementia Auckland’s resources when they need them, and take comfort in knowing that they’re not alone. This increase in communication has been a big part of their increased fundraising efforts and has helped significantly increase the organisation’s income – helping them provide much-needed support services for even more people with dementia and their carers!

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A continuous struggle to destigmatise

That said, the storytelling journey is far from over. Dementia still carries a stigma around it, holding people back from sharing their experiences in conversation, which we still see in clients worried about sharing their story.

One of the biggest challenges the organisation faces is helping people speak as openly about dementia as they now do about topics like depression, a once-taboo subject which has recently been brought more to the fore. Often the difference is awareness, which is why Dementia Auckland is continuing to share stories about the positive lifestyles that people affected by dementia can lead. For the people who have already found these stories, they’ve been able to share more openly their own experiences, and how they’ve adjusted to the changes dementia brings.

Destigmatising any topic can only be done when people take the lead and talk about them, and Dementia Auckland knows there is still progress to be made. But with Intelligent Ink supporting their storytelling journey, they know that in sharing a message of hope they’re on the right track.

So how can you help? Firstly, by talking about dementia with your friends and family – it doesn’t have to be a taboo topic! If you’ve got a family member with dementia (and they’re okay with it), share your story too – after all, we know how powerful personal stories can be. Dementia Auckland are there to support you along the way – just visit www.dementiaauckland.org.nz to find out how they can help.

Otherwise, to help people already affected by dementia, you can donate to Dementia Auckland here or, if you’re keen to keep up with what they’re doing, follow them on Facebook.