Providers must understand the needs of Stolen Generations survivors with dementia

Creating and sharing life story posters could be a meaningful and impactful way to remind aged care staff of the past trauma Stolen Generations Survivors have experienced, as leading experts search for new ways to improve provider understanding.

Approximately 17,000 First Nations people who are Stolen Generations Survivors are now aged 50 and over, meaning they can access aged care services. 

First Nations people are also three to five times more likely to develop dementia, while the rate of disease burden is more than double that of non-Indigenous Australians. Therefore, aged care presents as an important support tool for those who choose.

However, concerns over a lack of trauma understanding by aged care providers have spurred Dr Tiffany McComsey and Harpreet Kalsi-Smith to develop new support strategies.

“We are concerned that many aged care providers and many dementia care spaces don’t actually understand this trauma and what it means for Stolen Generations survivors and their experience of dementia,” Dr McComsey said.

The pair, who work with the Kinchela Boys Home Aboriginal Corporation, say that one innovation for residential care homes is that every Stolen Generation survivor has their own life story poster to have with them to display in aged care settings.

Ms Kalsi-Smith said the power of life story work is well documented as people living with dementia often have problems with communication and memory that make it difficult to express who they are and what matters to them.

“Creating a life story is a useful way to record important information about Stolen Generations Survivors and help others understand and relate to them in a supportive way,” she said.

The poster provides an overview of the person, what their likes and dislikes are and things that can support in de-escalating tensions should they arise.

These posters can be created by the Stolen Generations Survivors and with the people they know and trust, including families and communities. 

The Kinchela Boys Home Aboriginal Corporation itself highlights how important acknowledging and understanding past trauma is. The Kinchela Boys Home was built on the stolen land of the Dunghutti, managed by the NSW Government from 1924 to 1970 to house Aboriginal boys forcibly removed from their families. 

Roughly 600 boys lived at Kinchela during that time. Now called uncles, 50 are still alive today with a reunion event taking place in October (18th – 20th) planned to mark the home’s opening 100 years ago. At least seven of the Kinchela uncles are living with dementia with support from the Corporation.

The organisation today uses its resources to connect local Elders and other First Nations people with aged care resources. 

Ms Kalsi-Smith said Stolen Generations Survivors living with dementia are generally uncomfortable, or even terrified, by the idea of being moved into an aged care home. They feared they would once again be living in a place following someone else’s rules.

She said there was a vision for the Kinchela property to offer residential aged care that meets the special needs of the Kinchela uncles.

Uncle Colin Davis, 76, a Kinchela Survivor who was recently diagnosed with dementia, has signed a request asking never to go to an aged care home.

His wife of 53 years, Aunty Rita Davis, said the aged care options available on the NSW South Coast near their home would not meet his needs. She felt the white people running the services lacked the empathy required to understand Uncle Colin’s background.

“For him it would be like the restrictions he had growing up all over again. Once you put restrictions on him you never know what he’ll do,” Aunty Rita said. “He does it how he does it.”

Dementia Support Australia Head of Professional Services, Marie Alford, said all aged care services should ensure their staff understand what triggers Behavioural and Psychological Symptoms of Dementia in a Stolen Generations survivor and ways to safely de-escalate.

Dr McComsey and Ms Kalsi-Smith will be presenting at the International Dementia Conference this week, hosting the concurrent session Dementia and the Kinchela Boys Home Aboriginal Corporation Lasting Memory Project.