Education program key to understanding of dementia in remote Indigenous communities

There is no word for dementia in any Indigenous Australian language and as a result there is a large amount of stigma and misunderstanding associated with the condition, particularly in remote Indigenous communities.   

Education programs have been key to dispelling myths and increasing understanding about dementia to reduce discrimination and isolation of people living with dementia in Indigenous communities.

One such program, run by Dementia Australia Educator, Klem Hedenig, called ‘Understanding Dementia’ has been particularly successful in developing understanding of the condition in the Northern Territory.

“Because there is no word for dementia in any of the many Indigenous languages, to be able to give the condition a ‘name’ or a label means it can be spoken about and discussed in the community, rather than it being taboo,” Klem said. 

“Typically (but not always) when an indigenous person has symptoms of Dementia, in remote locations, that person is deemed to have a ‘curse’.

“People have told me that the clan will move to the next location and leave the ‘cursed person’ behind to fend for themselves, without appropriate care arrangements.

“To articulate dementia as a medical condition empowers people and families to seek help from health clinics and provide basic care. It does not get any more important than that.” 

The sessions include topics such as: ‘learn about dementia’, ‘what are the risk factors?’, ‘changes in behaviour’, ‘can it be cured?’, ‘what can I do to help someone who has dementia?’ and ‘where can I get help and information?’ 

“The feedback on the sessions has been overwhelmingly positive. Three elderly Indigenous people asked me to come back and they will encourage all of their ‘mob’ to attend,” Klem said.  

Recent studies have shown Indigenous Australians are 3-5 times more likely to develop dementia and at an earlier age of onset than non-Indigenous Australians. 

A lack of culturally appropriate diagnostic tools, and poor recognition of dementia within indigenous communities and among health care workers and service providers, has compounded the issue. 

Klem believes that educating the wider community and not just people living with dementia and their carers is key to reducing stigma and increasing understanding of dementia in communities. 

Attendees to the sessions include prisoners, people attending alcohol rehabilitation programs, police recruits, correctional services officers and people working in health clinics. 

“There are barriers to running education sessions out bush in Indigenous Australian communities such as language barriers where people may not be able to speak English at all or it may be their fifth or sixth language and sometimes the communities will have a different or no concept of time,” Klem said.

“I believe that perhaps training staff at the Health Clinics or wider community - who may understand local constituents – could be an option to get the message out.”

Pictured (left to right): Pratap Bharati, Klem Hedenig (Educator), Tammy-Jane Reece, Caitlin Gallagher, Shannon Hall, Karpagam Gunasegaran, Boskey Vohra