Dr Diana Karamacoska - Fostering inclusivity in dementia research and teams

Dr Diana Karamacoska narrates her blog written for the ISTAART Partnering with Research Participants PIA, shared by Dementia Researcher (this blog has also been published in Spanish).

People from culturally diverse backgrounds, particularly those that do not speak English, tend to be excluded from dementia research. This is a pressing issue considering the disparities associated with these populations accessing information about dementia, diagnostic support, interventions, and care services in highly multicultural places like Australia, UK, and USA. Seeing the impacts of these gaps in our own communities inspired Diana and the ISTAART Partnering with Participants PIA to make dementia research accessible, inclusive, and equitable. They are now sharing the lessons they've learnt so that other teams can intentionally embrace diversity (and avoid the hiccups they encountered). 

Find the original text, and narration here on our website.

https://www.dementiaresearcher.nihr.ac.uk/istaart-blog-fostering-inclusivity-in-dementia-research-and-teams/

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Dr Diana Karamacoska is a Postdoctoral Research Fellow at Western Sydney University with a background in cognitive neuroscientist. Diana is moving in to the the public health field after seeing the stigma, health disparities, and lack of appropriate education about dementia in multicultural communities. Diana is also Vice Chair of the ISTAART Partnering with Research Participants PIA.

 

Research for dementia therapeutics and care occurs in a world that is constantly changing. We can improve accessibility and meaningfulness of research by integrating perspectives of participants in the design and conduct of research, as well as in the way results are disseminated. A global forum is needed for researchers to share best practices on how to partner with participants, as well as opportunities to learn directly from the lived experiences of a diverse group of research participants. The ISTAART Partnering with Research Participants PIA, works with existing PIAs and leverage existing groups to ensure broad access and applicability. 

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This podcast is brought to you in association with Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support.

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