Despite being many thousands of kilometres from their community in Western Australia’s Kimberley Region, and a lot colder than what they were used to, the Looma delegation were in the nation’s capital with an important job to do and left feeling empowered to make a stand for better dementia care in their communities.
“Having contributed to the Summit will make a difference,” Looma community member Karleen Skinner said.
“It is so important we have education, training and workshops about dementia so our young ones have an understanding of this disease and not think it is culturally wrong-doing, like payback, or feel shame about it.”
Karleen was among a strong delegation from the Looma community who raised a lack of service providers visiting communities, no choice, a strong need for education, training, and understanding about dementia issues and access to culturally appropriate services for Aboriginal and Torres Strait Islander communities at the Dementia Australia National Consumer Summit at Parliament House in Canberra in March.
“The Summit was a real eye-opener for us mob, hearing and seeing other state’s concerns and issues - it has given me the confidence and the opportunity to speak up about our issues and concerns we have with the community … for our old people and their carers,” Karleen said.
“It was also good to know how we can better the awareness and have the understanding of dementia issues.”
The Looma community members were dealing with a tragic incident which had occurred within their community ahead of the Summit and attended despite their own personal grief.
On meeting Shadow Minister for Indigenous Affairs, the Hon Shayne Neumann MP, WA Centre for Health and Ageing’s Looma Strong Carers, Strong Communities Project community worker Myra Pindan said the community members were pleased Mr Neumann had acknowledged their sadness.
“In spite of our tragic incident in our community recently, I felt very strongly going to the Summit in Canberra. It was very important and an opportunity to voice our concern,” Myra said.
Dementia Australia CEO Carol Bennet said the Looma community members brought essential insights that policy makers must hear and respond to, and they brought learning and challenges for Dementia Australia to work with as the organisation thinks about consumer engagement.
“Community members felt very proud that they were able to speak up on behalf of their community,” University of Western Australia’s WA Centre for Health and Ageing, Strong Carers, Strong Communities, Project Officer Roslyn Malay said.
“It was very important for myself and the Looma community members to have the opportunity for people to hear our stories and the issues/struggles community members are dealing with in remote communities,” she said.
“It is so important we have more awareness, education, and training in our communities for our young people to know about dementia and other ageing health issues.”
Mark Pindan, also a WA Centre for Health and Ageing Strong, Carers, Strong Communities Project community worker filmed some of the Summit and plans to make a DVD to show the community.
“It was a good opportunity and experience for me to go the Summit in Canberra, and to be in Parliament House to talk about our problem and our views for our community,” Mark said.
Mark has also made a film about the Lungurra Ngoora Seniors Week Expo held in November last 2015 at Looma as part of WA’s Senior’s week celebrations. This event was sponsored by the Council of the Ageing and WA Centre for Health and Ageing.
The film tells the story of how service providers came together to provide information to caregivers of older people in the community.
Ms Bennett said the film gave insight into some positive work that can happen when consumer organisations, service providers and communities work in partnership. You can watch Mark’s film.
Looma Home and Community Care worker Lisa Sebastian shared her experience with the delegates at the Summit.
“It is very important for other people to hear our stories,” Lisa said.
“I had the opportunity to speak in front of everyone in the room on behalf my old people and their carers, raising concerns about dementia and the struggles in our remote communities,” she said.
“I believe our voices have been heard and having the opportunity, I hope we have made a difference for our people. It was rewarding allowing us to contribute to the recommendation.”
Looma Home and Community Care worker Laurie Yambo said he would like to see more visits from service providers, more choices for consumers and services for people with dementia that are culturally appropriate and respond to the needs of Aboriginal and Torres Strait Islander people with dementia.
As a member of the Dementia Australia National Aboriginal and Torres Strait Islander Dementia Advisory Group, Roslyn said she strongly believed Aboriginal and Torres Strait Islander community members should be given the opportunity to and be invited to attend all Dementia Australia National Consumer Summits.
“The community members are the ones who are facing and dealing with these issues and struggles day-in and day-out,” she said.
“It is good to hear from the families and carers themselves. It is their experience.”
Roslyn said it was also important for service providers to hear about these issues and to support the Aboriginal and Torres Strait Islander communities to meet those challenges.
“I would hope and like to see community members get the opportunity for education and training programs that can help and support the communities and also provide people with formal qualifications so community members are able to train/teach their own people in their communities. And more importantly, to look after their love ones who have dementia on country,” Roslyn said.
“I strongly believe it is so important for everyone in the community to have an understanding of dementia.”
Dementia Australia CEO Carol Bennett thanked members of the Looma Community for attending the Summit and said the contributions made would help shape the development and delivery of services for people living with dementia and their carers.
“We will also continue to share these messages with political leaders to improve service delivery in remote communities,” Ms Bennett said.