Rest In Peace Sue Stephen
Members of the Dementia Alliance International (DAI) were extremely saddened to learn of the death of one of their co-founders, Susan (Sue) Stephen, who lived in Canada, and sends their condolences to Sue’s children and other family and close friends. We publish this tribute to Sue today, to honour her as one of DAI’s co-founders.
Sue lived with a rare form of dementia known as Posterior Cortical Atrophy. One of the first symptoms Sue experienced, which quickly impacted her ability to drive, were changes to her vision, although as many DAI members have also reported, it took some time for her doctors to take her seriously, and to diagnose her.
Sue was feisty, and funny, and great friend, and a wonderful brains trust. As one of the eight co-founders, who all had great ideas and aspirations, although like all groups working together, sometimes conflicting for how to set up DAI, and how to run the organisation, Sue always brought us to a place of wisdom, and collaboration for the greater good of the millions of others living with dementia, but who did not have a voice.
Sue lived in British Columbia, on the West coast of Canada, and had two children, both in their twenties when she helped to found DAI. Her parents were strong supporters of community life. She graduated from university with a Master’s degree in Public Administration. Over the next 25 years Sue learned the ins and outs of government policy making, legislation, and strategic planning. She worked in all layers of government from Cabinet down and in different areas of policy. In 2011 her mother, who had Alzheimer’s, passed away, and their family had been her family carer.
Then three months later, Sue was diagnosed with dementia, a rare form called Posterior Cortical Atrophy (PCA). She was shocked and had to do her own research into PCA as there was so little understanding of it where she lived. PCA presents as visual issues rather than memory issues. Sue finally found support in a Facebook group based in London and saw the power of using social media for direct help and support for those with dementia, and DAI is dedicated to our community of people with dementia and the need to speak out for ourselves and the next generation.
Despite her diagnosis, Sue fought with grace, determination and strength. She always chose to find the joy in life, and to have a positive outlook. Sue loved going for walks, playing the drums, listening to music, traveling, eating favourite meals, playing with her grandchildren and going for drives along the ocean with her husband. She was always happiest, however, when she was with her family and friends. Sue is survived by her husband and partner of 50 years, two beloved children, and two adored young grandchildren. All of whom helped to care for and support her in her own home until she passed.
Rest In Peace Sue, we will miss you.
About DAI: Dementia Alliance International (DAI) is the first global group of, by and for people with dementia, where membership remains inclusively, and exclusively for people with any type or cause of dementia. In the last few decades, the voices of people with dementia around the world have become stronger, led by our pioneering advocates including Christine Bryden, Peter Ashley, Lyn Jackson, and Carol Mulliken. Ultimately several people with dementia met online, sowing the seeds for what was to become the DAI, to give us back an autonomous voice, and to ensure the ongoing experiences of social isolation, discrimination, stigma, and exclusion are not forgotten. People with dementia had begun collaborating and connecting with the growing global networks of people with dementia who were speaking publicly and meeting with each other over the internet through blogs and social media such as Twitter and Facebook, or through published books.
DAI was established on 1 January 2014 to promote education and awareness about dementia, to eradicate stigma and discrimination, and to improve the quality of the lives of people with dementia. and is a registered 501c3 charity. DAI was also a very early adopter of zoom, having used it since 2013 whilst setting up the organisation. The founding members of DAI were John Sandblom, Kate Swaffer, Amy Shives, Steve Ponath, Janet Pitts, Dr Richard Taylor (dec, July 2015), Dena Dotson (dec, April 2015) and Susan (Sue) Stephen (dec, November 2022).
If you are diagnosed with dementia, or know someone who is, it is easy to become a member of DAI for free.
Join a DAI Special Interest Group