Facing a New Chapter: Navigating Alzheimer’s and Down Syndrome

My painting is called “WHAAAT!!”, which is how I feel when new challenges show up in our lives. Paul’s painting is called “Whatchu Looking at Peckerhead?”. Both paints are on display from Sept. 23rd to Nov. 2nd at the Atomic Rooster’s Annual Cock Show (303 Bank St., Ottawa, ON).

I’m entering my eleventh year of caring for my brother. Every few years, it seems, a new challenge arrives and with it, a steep new learning curve.

My instinct when that happens is always the same, I step right up to the firehose and drink from it while it’s on full blast. It’s overwhelming, often painful, and I usually come out of it disoriented but it’s the only way I know how to meet the next challenge head-on.

This year, that challenge has a name, Alzheimer’s Disease.

Sadly, people with Down syndrome are at very high risk of developing Alzheimer’s. As I’ve learned, the extra chromosome that causes Down syndrome also leads to the overproduction of amyloid plaque — the same protein linked to Alzheimer’s. The mean age of diagnosis is 53.8 years old, and my brother, as it turns out, is right on schedule.

At this point, we’re still in the “anticipation” stage. There aren’t clear signs yet, aside from the occasional misplaced item in the kitchen though I can’t say for sure whether that’s Alzheimer’s or just his trademark overzealous organizing.

Since his diagnosis earlier this year, I’ve been drinking from the firehose of Alzheimer’s information including research papers, online forums, medical articles and webinars. But eventually, I had to stop for the sake of my own mental health.

Here are a few things that helped me catch my breath.

A wise friend and disability justice scholar, Dr. Pamela Block, reminded me that Alzheimer’s is a disability. That insight softened the sharp edge of fear I felt about the future. Seeing it through the lens of disability reframed things from a narrative of loss to one of adaptation, rights, and ongoing care. Something I am already an expert at navigating.

I also joined a Facebook group dedicated to Alzheimer’s Disease and Down syndrome. While I did find helpful insights there, it was heartbreaking to visit regularly. If you choose to join, know that it’s a space of fierce love and profound pain all within the current American landscape of scarce resources. It is a reflection of how deep the bonds of caregiving can run, especially when support systems fail. 

While Canada’s health care system is far from perfect, we do have access to more resources than many families in the U.S. In my experience, if Canadian resources feel limited, it’s worth turning to the UK, which offers good tools and resources. For example there’s an upcoming free, online webinar called “Keeping People Who Have Down’s Syndrome Well Before and During Dementia.” If you’re walking a similar path, it might be of interest. You can sign up here.

As we navigate this next chapter, keep in touch, I’ll keep sharing the resources, insights, and support I discover along the way, both for others walking this path and for those who want to better understand what it means to care for someone you love. You’ll find these updates and links here on my blog as I continue to learn, adapt, and, as always, try to drink a little more gently from the firehose.