Rebecca Luna, or better known as WhereDidBecsGo online, was someone I had been following for more than a year on TikTok. She was chronicling her journey through a diagnosis of young onset Alzheimer’s disease and her decision to access medical assistance in dying or MAID. She died on Saturday, July 25.

Rebecca’s story has gotten a lot of media attention this week. There have been stories in media outlets around the world. I started following Rebecca before I started working at Dying With Dignity Canada. I found her story compelling. She was young and vibrant. She showed up online with real talk. She was authentic and funny – it was a dark sense of humour and I liked it. And she was sharing her health challenges and her journey to a diagnosis that I think most people her age would find scary; young onset Alzheimer’s disease. Rebecca also shared her journey through the MAID process. Her online community got real talk; her inner thoughts shared out loud. She explained her challenges, her health journey and why she was making the decisions she was. It was real and often very raw.

I personally connected with Rebecca online on more than a few occasions. I also had the pleasure of speaking with Rebecca and her close friend and support person Vanessa over Zoom earlier this year. While I won’t share what we talked about, what I will say is that Rebecca was very passionate about sharing her journey for others to learn from. She wanted people to know more about young onset Alzheimer’s disease and to learn more about the MAID process. Under current Canadian legislation, a capable adult must give voluntary and informed consent for their MAID provision right before the provision itself. This means that individuals living with Alzheimer’s disease and other neurocognitive diseases have a short window of time during which they can apply and be found eligible for MAID, as their disease progressions typically lead to no longer being found capable to give consent.

Rebecca knew this and was, like many people across Canada, upset that advance requests for MAID are not currently legal in Canada. They are only allowed in Quebec. An advance request would allow a competent person with a diagnosis of Alzheimer’s disease, dementia or other neurocognitive disease to make a written request for MAID that could be honoured later, after they lose the capacity to make medical decisions for themselves. An advance request could save a person from having to endure years — perhaps even decades — of unwanted suffering.

Rebecca wanted to advocate for access to advance requests for people with a diagnosis like hers. One of the things that Rebecca shared often on her TikTok account was the fact that once she decided on MAID, her diagnosis would likely force her to set a death date earlier than she really wanted because she knew that there would come a time that, because of her disease, she would lose the capacity to consent. This is why advance requests are so important.

Young onset Alzheimer’s

Rebecca shared a lot about her diagnosis of young onset Alzheimer’s disease and how it was impacting her life. Although Alzheimer’s disease is often associated with older adults, about 5% to 7% of people diagnosed are under 65, according to Rare Dementia Support Canada. Young onset Alzheimer’s disease typically affects people in their 40s, 50s and early 60s. According to the Alzheimer’s Society, in Canada today, it is estimated that there are 16,000 Canadians under the age of 65 years living with dementia. It is often poorly recognized because of the young age when symptoms are first noticed and because there is a general misconception that dementia only affects older adults. Symptoms can also present differently in individuals and may involve changes to memory as well as other changes in vision or language. As a result, individuals experiencing symptoms of young onset Alzheimer’s disease are more likely to experience delays getting a diagnosis or be misdiagnosed.

Advance requests

Rebecca often shared with her online community how difficult it was to decide on a death date because it was so hard to know when she might lose the capacity to make that decision for herself, without the ability to have an advance request in place. Advance requests continue to be a top priority for DWDC. As Parliament resumes this fall, we are refocusing our attention on this topic with a new letter writing campaign to remind MPs across the country how important advance requests are to people across Canada.

Join the conversation

If you think it is time to make advance requests as part of federal MAID legislation, we invite you to join the conversation. Your voice matters. Tell your MP and the Ministers of Health and Justice that you want to see advance requests as part of federal MAID legislation. Or consider calling or meeting with your elected official to have an even bigger impact. Find our action toolkit and more information on the advance request advocacy page on our website. For more frequent updates on our advocacy issues, as well as easy access to our educational materials, please consider signing up for our e-newsletter.

Like many people across Canada facing a life-limiting diagnosis, Rebecca had questions about the MAID process. We Can Choose is a new initiative from Dying With Dignity Canada that provides clear information about end-of-life planning and care options, including MAID. Visit www.WeCanChoose.ca to learn more.