Race, COVID-19, and Dementia: June is Alzheimer's and Dementia Awareness Month

At least, June is officially Alzheimer's and Dementia Awareness Month in the U.S. Results for Canada seem to be mixed, with Canada's public health infrastructure celebrating World Alzheimer's Awareness in October.

Forget-me-nots, a near-universal symbol of dementia awareness, bloom in July. 

At least they do here, near the lake, in shady wooded areas. The ones above are from last summer.

In that spirit, let's not forget a few things, as we 
* continue to endure the COVID-19 pandemic, 
* are reminded, painfully, of our personal internal biases and the racism in our institutions, 
* are grateful in June for longer days, bright sunshine, and growing gardens
        - yet remember how long a day can be for someone with dementia 
        - and for the people who love and care for them 

Here's some information to read and remember. 

Canada's national dementia strategy, Together We Aspire, released about a year ago. (It mentions race in the context of Indigenous nations. Which is something. Is it enough?)

According to this study published in 2016, in the U.S. between 2000 and 2012, dementia incidence was highest among African-Americans (26.6/1000 person-years) and America Indian/Alaska Native (22.2/1000 person-years). Of intermediate incidence: Latinos (19.6/1000 person-years), Pacific Islanders (19.6/1000 person-years), and Whites (19.3/1000 person-years). Of lowest incidence: Asian-Americans (15.2/1000 person-years). 

Racial disparities in the rates of dementia in different races are linked to social determinants of health. Which is to say: education levels. Comprehensive, sustained treatment of hypertension, general cardiac and vascular disease, and diabetes. Access to wellness programs. Ergo: healthcare systems are racist. I'm linking to just one article but there are many. 

Nursing homes, long-term care homes, retirement homes--where many people with dementia are cared for in the later stages of illness--have been the site of most COVID-19 deaths in the U.S. and Canada. Here are links: An article about the U.S. rate from May. An article about Canadian rates from May. 

A website, AlzAuthors.com, compiles resources of all kinds (books, blogs, articles, caregiver guides, and writing by those WITH dementia) about Alzheimer's and other forms of dementia. (And yes, Reverberations: A Daughter's Meditations on Alzheimer's will be featured on their blog on July 1.)  The site doesn't include a way to search by race to find Black- or other BIPOC-specific resources. However, a friendly librarian or a bookseller at an independent bookstore might be able to direct you toward resources for those interested in the Black experience of dementia. 

The National Institute on Aging at the U.S. National Institutes of Health links to this PDF from Kentucky, The Book of Alzheimer's for African-American Churches. The chapter beginning on page 57, "Dementia and the African-American Community," shares more sobering statistics and cultural concerns. It refers to Nebraska activist Lela Knox Shanks, author in the late 1990s of Your Name is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's. The resource suggests ways churches can reduce stigma around dementia and questions of faith that may arise in people with dementia and those who love them. It includes ten concrete actions that faith communities--or any community, really--could undertake. 

Similarly, I'd "known" that COVID-19 is more prevalent in nursing homes, but I was shocked all over again at the ease with which I found references describing and discussing that fact. And conversely, I was surprised by the relative lack of data around race and dementia, and the relative lack of race- or culture-specific resources. 

Neither search was exhaustive--and both were exhausting. Illuminating. Good experiences for me, in this month of long days.

I keep coming back to this: stories are important. 

So: Whose stories are we hearing? Whose stories are we ignoring? 

Who's not sitting at the table--who isn't even in the room? 

How can we open doors, vacate seats, pass the microphone? 

How can we keep listening, no matter how exhausted or uncomfortable we are? Because we must. We must.