Dementia affects all communities. And our responses to dementia and people with dementia are undoubtedly shaped by perspective and cultural values. This post focuses on dementia resources in Aboriginal and Torres Strait Islander communities. In addition to resources for indigenous communities in regional areas, there are resources for metropolitan Indigenous communities and those working with them.
Efforts to address dementia in Indigenous populations have been hampered by a lack of culturally appropriate cognitive assessment tools. Current questionnaires that assess dementia(such as the Mini Mental State Exam) have been shown to have considerable cultural, educational and language bias which impairs their application in the Indigenous community. The Kimberly Indigenous Cognitive Assessment (KICA) was developed to address this problem and is an instrument used to assess dementia in older Indigenous people in remote settings. The KICA includes client assessment and informant report of cognition, behavioural and psychological symptoms of dementia, medical history, and alcohol and smoking use.
To date, the KICA has been validated for remote and rural areas of Australia and the ‘Koori Growing Old Well’ study (Neuroscience Research Australia) is currently undertaking a survey of older Indigenous people in the urban Sydney region, and includes a modified form of the KICA. Preliminary data indicates its usefulness in urban regions. However the utility of the KICA in Victorian indigenous populations is still being investigated. Findings from the Victorian review of KICA suggested by the the expert panel, focus groups, and delphi process suggested a number of changes to the original KICA are needed to develop a KICA tool suitable for regional and urban Victoria. As well as the report, the revised questionnaire and supporting materials are included on the webpage.
YouTube: You’re Not Alone: Discussing Dementia – Episode 6: Losing the Dreaming
A resource for carers of people living with dementia in the Aboriginal Community. The short film features Birpai Elder Uncle Bill O’Brien discussing his experience of caring for his mother, who had dementia. Uncle Bill candidly shares his emotional journey of being a carer and the personal impact it had upon him. Brave and moving stuff! Importantly, it emphasises the help that is available and that people are not alone on this journey.
DVD: The Fading Moon: A Dementia Resource for Aboriginal and Torres Strait Islander communities
This DVD was produced to raise awareness about the experiences of Indigenous carers who provide support to family members or friends with dementia. The DVD features the personal stories of carers, and also includes commentary from people working in the dementia field, such as Professor Tony Broe. The DVD consists of five chapters, each of which can be shown individually or collectively:
- what is dementia
- how dementia shows up (warning signs)
- the impact (symptoms)
- carers and support.
You can obtain a copy of the DVD: Jenny Hayes, Aboriginal Liaison Officer, Access and Equity Unit, Alzheimer’s Australia SA, 27 Conyngham Street, Glenside SA 5065 Ph: (08) 8372 2122 or firstname.lastname@example.org.
Of course, you can borrow it from the Victorian library of Alzheimer’s Australia as well.
Resource: Help Sheets
A series of help sheets about various dementia topics have been developed to inform Aboriginal and Torres Strait Islander people about dementia.
YouTube: Love in a Time of Dementia
“Love in the Time of Dementia” was made in collaboration between italklibrary and Carpentaria Disability Services. This story seeks to inform Indigenous communities about caring for family members who have dementia. Additionally, its a beautifully produced and moving story of love, tolerance and acceptance of a family member and a spouse with dementia.
This Briefing presents evidence from research to guide mainstream community aged care organisations and practitioners on working in a respectful and culturally sensitive manner with Aboriginal and Torres Strait Islander people. It aims to help enhance the quality of care by ensuring it is underpinned by reflection, knowledge, understanding and respect. However, this Briefing should not be understood as a universal set of protocols, nor as a prescription for care, as Aboriginal and Torres Strait Islander cultures are complex and extremely diverse, and accepted protocols vary across communities.
The Briefing was prepared by Sharon Wall and the Koori Growing Old Well Study Project Team at Neuroscience Research Australia, in partnership with The Benevolent Society.
YouTube: Walkabout Memories
This short DVD was filmed by Steve MacDonald of Life and Times and people from the Gumbaynggirr community volunteered their time to act in the film. The film goes for about 5 minutes and is recorded in an interview format with family members talking about dementia and what can be done to help.
Publication: Look After Your Brain, A Guide to Dementia for Aboriginal People Booklet and Poster, 2012
This booklet has been produced for Aboriginal people who have dementia, or who have family members with dementia. It provides information to help those touched by dementia to appropriately manage the illness. The contents covered in the booklet includes:
- what is dementia
- what are the signs of dementia
- what are the causes of dementia
- how to reduce chances of getting dementia
- caring for someone living with dementia
- seeking help.
The booklet includes photographs, artwork, and wording that is culturally appropriate for the target audience.