Supporting Stolen Generations survivors with dementia

More needs to be done to support Stolen Generations aged care residents with dementia, experts say.

There are 17,000 First Nations people who are Stolen Generations survivors, aged 50 and over. Many of these individuals are now frail with age — with Aboriginal and Torres Strait Islander people also three to five times more likely to develop dementia.

Dr Tiffany McComsey and Harpreet Kalsi-Smith, both with the Kinchela Boys Home Aboriginal Corporation, believe that Stolen Generations survivors should have a life story poster with pictures on display in their rooms in residential aged care homes to keep reminding staff of their past trauma.

“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,” McComsey said.

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, their likes and dislikes, and things that can support in de-escalating tensions, should they arise

Importantly, the posters need to be created with Stolen Generations survivors and people they know and trust — ideally to be used in an environment that is trauma-informed — and with people who have a deep relationship with the survivors and descendants.

The Kinchela Aboriginal Boys Training Home, located near Kempsey on the NSW Mid North Coast, was a place established for First Nations boys forcibly removed from their families.

The boys grew up identified by numbers, not their names. Their heads shaved, and forbidden from speaking their own languages, they endured de-programming to assimilate into white Australia.

Of the 600 boys, now called uncles, who lived at Kinchela, 50 are alive today. At least seven of the Kinchela uncles are living with dementia with support from the Corporation.

As well as the life story poster concept, another measure that McComsey and Kalsi-Smith believe that aged care providers should consider is training about the Stolen Generations legacy, and participation in a truth-telling process with a Stolen Generations survivor.

Kalsi-Smith said aged care workers should be trained in trauma-informed care, because Stolen Generations survivors living with dementia are often uncomfortable with, or even terrified by, the idea of being moved into an aged care home. She said this is usually because they fear that they will once again be living in a place following someone else’s rules.

Kalsi-Smith said there was a vision for the Kinchela property to one day offer residential aged care that meets the special needs of the Kinchela uncles.

Uncle Colin Davis.

Uncle Colin Davis, 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.”

Top image: Kinchela Aboriginal Boys Training Home survivors, descendants and family members gathered recently for the KHBAC Walking Together program.