Awareness Month 2024: Jean

While many people still believe a dementia diagnosis marks the end of a meaningful life, the Alzheimer Society of B.C. is committed to flipping the script this Alzheimer’s Awareness Month by shedding light on the extraordinary stories of people who have discovered unexpected joy, peace and happiness while navigating the challenges of the disease. Our community has shown us that, despite the difficulties, living with dementia can inspire profound appreciation for the present. 

Throughout January, we are sharing the stories of people like Jean Collins, a dedicated educator, social media activist and care partner to her sister Kathy. The sisters are intent on rewriting the narrative of dementia. 

"Creating 'The Kathy Project' on TikTok was more than a journey to educate; it became a lifeline for both of us. In the midst of chaos and uncertainty, our virtual community gave us purpose, meaning and an unexpected joy that illuminated the darkest corners of our dementia journey," says Jean.  

Born just 15 months apart, Jean and her sister Kathy have shared a lifetime of closeness despite their differing personalities. Their bond faced an unforeseen test when signs of Alzheimer's disease began to cast a shadow over Kathy's vibrant life. A successful businesswoman in Calgary, Kathy’s business was collapsing and Jean decided to intervene and hopped on a plane to Calgary from Vancouver Island for a one-month visit. 

A few months later, Kathy followed her sister back to Victoria and what should have been a brief visit turned into an indefinite stay. Kathy’s entire demeanour was different, and Jean was starting to see signs of memory loss and disorientation. Jean – an experienced advocate for people living with disabilities – persuaded Kathy to seek medical help. It took eight months to confirm that Kathy was living with young onset Alzheimer’s disease. 

Relief and fear accompanied the diagnosis. The pandemic struck, isolating families further. It was during this challenging time that Jean discovered TikTok and decided to share their journey. "The Kathy Project" was born in May 2020, becoming an instant sensation. "If you get a diagnosis, it doesn’t mean your life is over; yes, it’s a long goodbye but Kathy is just transforming, spinning something positive out of a negative situation," says Jean. The platform provided a virtual community when in-person support was no longer accessible due to lockdown. 

Having that community gave Kathy so much purpose and meaning but the challenges kept mounting. Jean experienced a grand mal seizure, losing her license and gaining a new perspective on the struggles her sister faced daily. Amidst family health challenges – including their mother's cancer diagnosis and their father's vascular dementia – Kathy continued to decline. 

As Kathy's journey took her into a long-term care facility, the TikTok community remained a steadfast companion. Kathy, integrating into her new community, found unexpected joy and recognition from her online presence. Jean discovered moments of trust, love and happiness amidst the difficulties of caring for someone with Alzheimer's disease. Yet, the journey has come with sacrifices. Jean, now a full-time caregiver, has had to relinquish her job, her interests and – at times – her sense of privacy.  

"As far as being a caregiver goes, I'll quote Rosalynn Carter,” Jean says. “She said there are only four kinds of people in the world – those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers.” Jean urges other care partners to get as much help as they can. “Carve out space for yourself. Don't give up in the midst of the grief!"  

Learn more about the campaign

Want to learn more? Read some of the other stories being shared throughout the month at alzbc.org/FullOfLife.