Connecting Stories - The impact of dementia in Aboriginal and Torres Strait Islander communities
Dementia Australia has been undertaking some exceptional work in response to the recommendations from the Centre for Remote Health, that a “key worker” program model is needed in order to improve service pathways for Aboriginal and Torres Strait Islander people with dementia in parts of remote Central Australia.
The Younger Onset Dementia Key Worker Program (YODKWP) within Dementia Australia had agreed to adapt the program to work with local Aboriginal and Torres Strait Islander people in their own communities to deliver this program successfully in a flexible and empowering manner.
Younger Onset Dementia Key Worker and Community Engagement Officer, Steph Charlesworth from Dementia Australia Northern Territory attended a carer respite camp with the community of the Palumpa in partnership with Carers NT to share their story:
It started with a dream. The night before my journey I dreamt an eagle landed on my left arm and it indicated that it was not well and wanted someone to listen to it. I said I would meet it soon, and it then flew away, leaving my left arm hot for four hours afterwards.
The next day I met the group at the carers camp and my attention went towards a particular lady who was sitting outside her tent. She was not interacting with the others and looked sad. It was not until the next day that we were sitting in a group talking about totem names… that I asked if anyone’s totem was an eagle. This lady said it was hers. I told the ladies about my dream and they indicated for me to go talk to her.
“We’ve met,” she said. “Yes,” I said… She told me how sick she was feeling, how concerned for her family she was and how she was so sad. I listened and listened… and she smiled, which she hadn’t done for a long time.
This is how it is for the camp. It was a series of interactions where words were not the dominate way of telling stories, but connecting through feelings and being. Sitting in silence with someone watching the others collect water lilies; fishing silently on the bank; bouncing through the rugged country; sitting down painting. Everyone was expressing themselves in their own ways and it was a connection of people born in the same land, but experiences apart.
I listened to the stories of trauma that these women have gone through in their lives and was humbled by their resilience and their acceptance of myself on their land. I was reminded how important it is to establish relationships before talking about dementia or providing any other sort of information. Developing the relationship enabled them to feel safe when asking the questions of what this ‘dementia’ was and without it the words can mean nothing.
Overall it was a valuable experience and one that will stay with me.
The delivery of the YODKW program into remote communities will raise awareness of younger onset dementia in the context of the community, highlight risk factors, as well as develop protocols for timely assessment and diagnosis. The program will also provide capacity building and workforce education in order to ensure sustainability for the future as service intensity is reduced.
The story from Palumpa was put into a promotional poster to be used at YODKWP conferences to help exhibit the stories of connection that was felt there, and highlight the activities the program focuses on in order to help reduce the impact of dementia in indigenous communities. This will become a valuable resource for the program in its own right, and a great way to showcase the interaction within these communities.
Click the image to see the full size poster image (7MB)