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The hidden epidemic

Professional understanding of dementia within indigenous populations is still in its infancy. Linda Belardi examines the current evidence.

The early identification of dementia in indigenous populations is an emerging public health concern with studies revealing a prevalence rate nearly five times higher than in the general community.
Current evidence from Australia’s Kimberley region indicates dementia affects 12.4 per cent of Aboriginal people aged over 45, compared with 2.6 per cent in the general community.

Efforts to improve early diagnosis and treatment of indigenous Australians with dementia have been hampered by the absence of a standardised and culturally appropriate cognitive assessment tool.

In recent years, the Kimberley Indigenous Cognitive Assessment tool has been successfully trialled in Australia’s rural and remote top end and is soon to be trialled in the metropolitan areas of NSW.

However, further trials are needed in a diverse range of Aboriginal communities including Central Australia and urban cities to further promote early screening and assessment.

Edward Strivens, regional geriatrician with the Cairns and Hinterland Health Service District says language barriers and a higher tolerance for behaviour change have contributed to the late identification of the disease.

“We need to increase awareness within indigenous communities that dementia is not a normal part of the ageing process so that early intervention is sought,” he says.

While dementia is perceived in many different ways, there is often poor recognition of dementia as a medical condition.

“A significant issue related to the experience of dementia within indigenous communities is a reduction of awareness of dementia as a disease and a lack of appreciation of the significance of the diagnosis and the person’s care needs,” he says.

To overcome these barriers, local care workers need to work very closely with families to involve them in the process of understanding the diagnosis through video-conferencing with families and visits to the community.

While dementia prevalence in urban and regional indigenous communities is not yet established, it is reasonable to hypothesise the risk would be similar to those in remote communities, says Strivens.

The small sample of studies to-date also suggests dementia presents at an earlier age and is higher amongst males than females, which is the reverse in the general population.

Despite having a significantly younger population, indigenous Australians have a higher incidence of additional risk factors for cognitive decline across their lifespan including low educational attainment, substance abuse and cardiovascular disease.

Meaningful attempts to address the high rates of dementia in the indigenous population must recognise their cultural perspectives.

“The Stolen Generations are now an ageing cohort and they can have a real suspicion of being taken off country,” says Strivens.

Indigenous communities require culturally appropriate care options that are sensitive to the historical and psychological impact of dispossession and respect their preference to remain in their community.

External treatment in residential care can be interpreted as a cultural threat or described as a cultural trauma, he says. For many indigenous elders, ageing well is connected to their ongoing participation in the community as the transmitter of cultural values, traditional language and sacred customs.

As indigenous Australians begin to age in a manner consistent with the general community, the risk of dementia may become greater.

Increasing longevity, most notable in the 45-64 age groups, will also increase demand for aged services by indigenous populations.

Given the fact that the diagnosis of dementia in indigenous communities is still in its relative infancy, it is not possible to accurately determine the extent to which Aboriginal people are accessing dementia services in diverse locations across Australia.

However, a literature review, released in June this year by the Primary Dementia Collaborative Research Centre, found that very few indigenous people with dementia access formal aged care programs. For example, in the case of community aged care packages, only 3 per cent of clients in 2006 reported being indigenous Australians.

While compelling glimpses into the experience of dementia in indigenous populations are emerging, current knowledge is highly fragmented and indigenous Australians are under-represented in national data collection on dementia.

A three year scoping study was recently conducted to identify the unmet needs of people with dementia and their caregivers in the Kimberley region.

The Indigenous Dementia Services Study’s final report, released in August, identified genuine community consultation, service coordination and access to culturally relevant services as significant service gaps.

The study of 42 Kimberley service providers, 16 caregivers and 15 HACC workers found community care services for people with dementia were lacking, leading to poor outcomes for people with dementia in remote communities.

“The discriminatory attitude of the general community towards remote Aboriginal community members has also impacted on client care,” the report says.

A constant theme that emerged in the interviews was the importance of cultural training for service providers and community care staff and the need to engage with the Aboriginal workforce.

Service providers were concerned about the lack of aged care specialists based in the region and the infrequency of geriatrician visits to the Kimberley.

The interviewed carers discussed the importance of keeping the older person in their preferred care environment, which was often with their family and on country. This contradicted the stereotyped views of some service providers who presumed the majority of carers were more interested in receiving government payments than providing care.

As a result of the one year pilot project, an integrated, flexible community care service was established which saw a dramatic improvement in the number of services available to indigenous clients.

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