Edie Mayhew and Anne Tudors “Bigger Hearts” Campaign story

In our continuing series of daily #RememberMe stories  for World Alzheimer’s Month 2016 #WAM2016, we share DAI member Edie Mayhew and her partner Anne Tudors “Bigger Hearts” Campaign story. It is an exciting project happening in their local community, full of love, inclusion and a while of community commitment to improving the lives of everyone.

Thank you Edie and Anne, for sharing your story with us here…

Edie Mayhew presents at the "Bigger Hearts" campaign launch
Edie Mayhew presents at the “Bigger Hearts” campaign launch

“Anne and I would like to share our “Bigger Hearts” Campaign with DAI members.

It was launched in our home town, Ballarat on 30th August, 2016. The project partner’s include, Dr Catherine Barrett of @celebrateaging, Alzheimer’s Australia Vic and Ballarat, Ballarat City Council, Carer’s Respite and Neighborhood House, Ballarat North  (where our YOD weekly art classes take place). The major sponsor for the project is Australian Unity (our Consumer Directed Package provider) who will cover amongst other things, the cost of a project film.

The title of the project comes from a conversation Anne and I were having some time after the ADI Perth Conference. Anne was talking about how much our lives had changed since my diagnosis and that dementia had been quite transformational in many ways. She talked about the experiences we’ve had and the amazing people we’ve met. When she eventually drew breath, I said “Our Hearts are Bigger”. Anne was stuck for words!!! Since then we’ve distributed hearts to those present at all my presentations.Those in the “Quiet Room” received a heart in Budapest so they’ve travelled to many parts of the world. We moved from recognising dementia making our hearts bigger to inviting others, particularly dementia care workers, to engage their hearts in what they do so that their hearts would also be bigger.

Now we’re asking the Ballarat community to open their hearts to be more dementia aware and dementia friendly. I said we were a sub-culture wanting to be mainstream, not stigmatised, ignored or hidden away. I said we had work to do about increasing awareness and knowledge of dementia in our city, but we couldn’t do it without their support and assistance.

We were delighted the Mayor (who launched the campaign) and Deputy Mayor were present as well as a strong representation of locals. Janet Dore, a local with much corporate experience was MC and we’re delighted she will chair the Dementia Alliance to be formed at the end of October. Janet and I played cricket together in our 20’s!

We have three thousand postcards and five hundred posters distributed strategically throughout the city asking people to write down on heart shaped cards, what they think dementia is and how they suggest Ballarat could be more dementia. The responses will be used to inform the Dementia Alliance. We’ve also distributed lots of badges. A local hotel is having their staff wear the badges for the month of September. They were very keen to hear ideas about situations that arise at the bar at times.

Further activities include an event where people with dementia are paired with someone who wants to know more (a story catcher), to have a conversation about what the person living with dementia wants them to know and understand. We’re anticipating this to be powerful indeed and parts will be filmed. Ballarat City Council is also putting a group of staff though a dementia awareness experience. There is an event at a secondary school and primary school and another with Australian Unity.

An important part of the project is a weekly meeting at The Turret cafe for project partners and anyone else who may be interested to come along to chat, have a coffee, return or take more postcards, give feedback and so on. We’ve discovered a nurse engaged in a dementia research project through the process. The final event at the end of October will be an overview of the campaign, showing the film and signing people up for the Dementia Alliance and Bigger Hearts Club (similar to DAGs).

Something which has shocked and disappointed us during the planning process is the realisation that many local people with dementia, supposedly 1758 in Ballarat at the moment, are reluctant to participate in dementia awareness raising community events.

We’re still working our way through this reality. Some explanations: diagnosis is clearly not happening early enough; a collusion of silence and avoidance exists around people who have dementia, (we were shocked to learn that many people are not told by professionals and family that they have dementia); people with dementia have internalised societal views of helplessness, hopelessness and uselessness and alienate themselves from an active and satisfying community life because they feel shame. We were told time and time again, “They’re not ready yet”.

The experience of many of us with dementia is that socialisation and broad participation enhances wellbeing. There are so many DAI members living a satisfying and meaningful life as you all know. The challenge we face now is to first get PLWD to join others in a similar position in a dementia friendly cafe or pub. We do have some support in this. More than thirty community partners have signed up to Bigger Hearts.

At the moment we’re planning ways to break down some of these cultural barriers that have existed here for generations. It’s just going to take time and we need patience and clever ideas. That’s where Catherine Barrett comes in.

DAI member, Edie Mayhew, Dr Catherine Barrett & Anne Tudor
DAI memEdie Mayhew, Dr Catherine Barrett & Anne Tudor

Before the launch ended, Gorgi Coghlan, a children’s choir and musicians sang and played, “I will remember You, Will You Remember Me”. It was really beautiful and so special.

Follow us at Celebrate ageing: Bigger Hearts

Hope you’ve not experiencing September exhaustion.”

Warm wishes from Edie & Anne.”