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FECCA NCAN News Issue 3 2015

Past, present and future of dementia for CALD communities.

Extract of speech given by Pino Migliorino at 30th Alzheimer’s Disease International Conference in Perth 16 April 2015.

This paper will focus on three key thematics: Research and the role of Knowledge, community awareness, acceptance and related consumer participation; and service delivery and carer support.

Research: the known, the unknown and the basis for inaction

The research picture is truly one of the most complex and most frustrating aspects of dementia in culturally and linguistically diverse (CALD) communities. The reality is that the majority of medical and social research has implicitly or explicitly excluded people from CALD backgrounds.

This gap reduces the capacity to identify any specific considerations around dementia in CALD communities as well as its aggregated quantum to underpin priority setting, funding and resource decisions. Older people from CALD backgrounds are often excluded from dementia research due to language and an array of other barriers, leading to gaps in the evidence base.

If older people from CALD backgrounds are not part of the research design, there will continue to be an insufficient evidence base to ever get enough program specific attention of program and service modification commensurate with CALD dementia needs.

Education: community acceptance and consumer rights

There have been a large number of initiatives that seek to address this stigma and related lack of information and knowledge.These have taken the form of video resources, translated fact sheets, and direct community education. So yes there has been activity but there is still so much more to be done. In terms of information and resources both about and for CALD communities there is no central repository for these resources to be held and easily accessed.

The second reflection on community education in CALD communities is that it lacks continuity. It is indeed episodic with activity taking place when funding becomes available. This lack of sustained activity impairs the ability to address deep seated cultural sensitivities and falls a long way short in its ability to achieve behaviour change.

Assessment and support

The picture of delayed diagnosis is characteristic of CALD communities and dementia and has two main impacts. The first is that the delayed diagnosis will result in the disease being more advanced at the time of diagnosis. the second is that the diagnosis itself will need to take into consideration culture, age, language and socio- economic status, all influencers in cognitive assessments.

One of the projects championed by the National Cross Cultural Dementia Network has been the development of a culturally sensitive dementia assessment tool; the Rowland Dementia Universal Access Screening (RUDAS) tool. Even though this culturally sensitive tool has been partially validated ( giving the increasing numbers of ethnicities and languages in Australia) it has still not been universally accepted in Australia.

So how well prepared are our service providers and care facilities to deliver culturally responsive and ultimately competent services to CALD clients?

This is where the rubber will hit the road and there will be a need to, not only compel these services to take on responsibility but also, work with them to support this transitions and skills acquisition.

I will conclude by articulating an agenda for action to address this systemic differential and increasingly critical need.

I have labelled it in the  1 in 5 Agenda.

Research

  • establish the 1 in 5 imperative in which 20% of all research dollars are dedicated and quarantined for research in CALD communities.
  • promote research methods that address the current orthodoxy and narrowness in dementia research design and execution.
  • Agree on a priority community list to allow the creation of critical mass of work in a specific language/ cultural community. priority criteria should include size of language group in the 65+  cohort, level of English language competence, proportion of language/ cultural community in the 65+ cohort.
  • Increase grassroots community participation in research by fostering partnerships between CALD communities and researchers.
  • Undertake relevant empirical research including a longitudinal and prevalence research study across three priority language communities.

Education and Consumer Participation

  • Fund CALD community advocacy to deliver a level of significant and sustainable focus and expertise on the impact of cultural diversity across the dementia framework.
  • Establish and fund a standalone dementia awareness program for CALD communities that would utilise an extension and focus methodology; extending dementia awareness across multiple communities on an ongoing basis and focussing higher level attention to priority communities.
  • Establish a clearinghouse for CALD research and dementia specific resources across the dementia continuum across research, education, assessment, medication and support.
  • Support CALD specific education and capacity building projects geared to increasing individual competency to operate within a client centred and led environment. This capacity development model should also extend to families and carers in CALD contexts.

Service Delivery and Carer Support

  • Promotion of the Rowland Universal Access Screening Tool (RUDAS) as the standard and preferred culturally appropriate cognitive screening tool for use in multicultural Australia.
  • Model cultural competence in dementia assessment and care through tool development across,

– organisational audit and planning tools

– workforce development tools

– community engagement and partnership approaches

– business investment and integration

  • Foster culturally competent practice in high care facilities from people from CALD backgrounds as a workface imperative.
  • Compel issue specific peaks such as carer and dementia specific organisations to address service access and competency issues in CALD communities through articulated contract compliance clauses.

Pino Migliorino is Chair of the National Cross Cultural Dementia Network, Honorary President of the Federation of Ethnic Communities’ Councils of Australia (FECCA) and Managing Director, Cultural Perspectives Group.

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