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Why Talking About Alzheimer’s Matters in Visible Minority Communities

As we near the end of June, it is important to acknowledge Alzheimer’s and Brain Awareness Month, and to reflect on how we can better support the women and other minorities who are severely impacted by this illness.

Approximately ⅔ of people living with Alzheimer’s are women and among them, visible minorities face a disproportionate risk. After doing some research, I found that there is very little publicly available data that shows the implications of this illness for people of colour - the research that has been done has used a predominantly Caucasian study population.

Growing up as a female in a South Asian household, Alzheimer’s was never talked about or acknowledged. The community I was immersed in was silent and brushed it off as a normal part of aging, leaving symptoms to go unnoticed and those affected without proper care. There is no word for Alzheimer's in many South Asian languages, which further creates misunderstandings and stigma about the illness within this community.

Not only are those suffering from Alzheimer's marginalized within their own community, but women from visible minority groups are also severely underrepresented in healthcare facilities - particularly in leadership roles - and are faced with discrimination and sheer neglect. This contributes to the deep distrust that many people of colour have towards the healthcare system and decreases their willingness to participate in the clinical trials that may lead to a cure.

In United Kingdom, Alzheimer’s Research UK began working with South Asian communities to find out how their perception of dementia differs. They found that many of these individuals were more willing to learn about their illness if the information was presented in their own languages. To do this, the organization developed a leaflet to expand and acknowledge dementia that was released in a number of languages!

In Canada, the Alzheimer Society is working to reduce the systemic barriers that shape the lived experiences of people of colour with Alzheimer's by conducting a national survey that is explicitly inclusive of Black, Indigenous and other visible minority communities. Doing so can help to give healthcare professionals the knowledge and tools to support and treat all Alzheimer’s patients.

While Alzheimer’s is a devastating reality for many individuals, there is still a lot to uncover beyond the illness and we must be introspective when considering how it affects women and people of colour. To be inclusive means creating a safe environment where not only we are protecting these communities, we are catering our healthcare services to them and to their specific needs.

To learn more:

Lee, 2021

Alzheimer's Research UK

Alzheimer Society of Canada

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