On the eve of Sophia Scott’s fourth birthday, her parents’ world turned upside down. In a stark Glasgow hospital room, five doctors delivered news that would forever change their family’s trajectory: Sophia had been diagnosed with childhood dementia, specifically Sanfilippo syndrome, and was unlikely to live beyond the age of sixteen. "It was delivered like a complete thunderbolt," her father Darren Scott told Sky News. "We were told... there was nothing they could do. It was a moment that broke us, shattered our lives. We have never recovered."
That day, January 9, 2016, marked the beginning of a difficult journey for the Scott family. They were handed an information sheet and a phone number for support—then sent home to process the unimaginable. "We were left on the street, vomiting outside the hospital, collapsing, being told our daughter was going to die," Darren recalled in a deeply emotional interview. Their daughter, once a vibrant, horse-loving girl brimming with energy, would gradually lose her ability to speak, eat, and walk. Today, nearly a decade later, Sophia is approaching her fifteenth birthday in February 2026, but the shadow of her diagnosis still looms large.
Sanfilippo syndrome is just one of more than 140 rare, genetic neurodegenerative metabolic conditions that can cause childhood dementia. According to Alzheimer Scotland, at least 400 young people in Scotland are estimated to be living with childhood dementia. Yet, knowledge about these disorders remains painfully limited. There is no official data on the precise number of children affected, and families often find themselves isolated, navigating a confusing and under-resourced system.
For Sophia, the first signs of trouble were subtle. Her nursery teachers noticed she was regressing in reading. Her parents, assuming it might be a vision problem, ordered glasses and arranged tests. The results, however, were devastating. Sophia’s decline began slowly—she developed normally until age six, but then started losing her speech and other abilities. "Those last words begin to fade and you try to hold on to them," Darren said, describing the heartbreak of watching his daughter’s world shrink day by day.
The lack of support and understanding for families like the Scotts is a recurring theme. "There is no support, there is no funding, there is no research, there are no trials," Darren lamented, noting the stark contrast with the resources available for adults with dementia. The family’s experience is far from unique. According to Jim Pearson, chair of Childhood Dementia Scotland and a representative of Alzheimer Scotland, "Children and families are often isolated. I think misdiagnosis is often the case. Getting a diagnosis is really difficult because actually what does happen is that it is sometimes misunderstood and mischaracterised. Children are often diagnosed with conditions like ADHD or potentially autism. Parents often have to fight... that journey for families can sometimes take two or three years."
While Sophia’s story is harrowing, it’s echoed by families across the world facing the unique challenges of dementia. In a remote Gitxsan Nation community, Melody Daniels and Dustie Wilson are caring for their mother Kay, a residential school survivor living with dementia. Their family endured immense loss in 2021, losing six family members, including their father and three of his siblings within six months. The grief was compounded by the pandemic, which delayed traditional memorial ceremonies. Kay, in a decision uncharacteristic for their culture, purchased and erected a headstone herself. "That’s not the way of our Gitxsan people, but we know now it was because of dementia," Daniels told The Interior News.
January is Alzheimer’s Awareness Month, and the Alzheimer Society of B.C. is using this time to highlight stories like Kay’s to raise awareness and promote understanding. "Our mom has helped so many people in our community," Daniels shared, recalling Kay’s years of fundraising for youth basketball and managing the local gas bar. Yet, as dementia progressed, Kay’s behavior changed, leading to verbal and physical outbursts that her children now believe are linked to trauma from her time in residential school—pain she never spoke of before the disease.
Living in a remote region presents additional hurdles: access to care is limited, and information can be overwhelming or difficult to find. Fortunately, Daniels and Wilson found support through the Alzheimer Society of B.C.’s First Link Dementia Helpline. "The person I talked to was so helpful," Daniels said. "She had compassion, she had knowledge, she was understanding and direct with me about what to do. After I talked to her, she mailed me a package of information about dementia and resources in my area. I just feel blessed to have these resources within my reach."
But the challenges of caregiving persist. "I wouldn’t be able to do this without my sister and my son," Wilson admitted. "When I’m having a rough day with my mom, I call my sister and she says the words I need to hear." The family is determined to share their story so others in their community can recognize dementia symptoms earlier and access support, ensuring safety and dignity for those affected.
Back in Glasgow, the Scott family continues their search for answers. Darren has traveled extensively to meet medical experts, desperate for a breakthrough that could help Sophia and others like her. "We were told she wouldn’t live long, with an average life expectancy of 16," he explained. "Sophia will be 15 in February. It’s criminal that we were given that timeline as it’s forever embedded in our heads in this race against time that we’re losing." There is hope on the horizon—clinical trials may finally be within reach. But for Sophia, whose condition is now advanced, her family fears it could be too late.
The need for awareness, research, and support is urgent. A recent report concluded that parents and children dealing with dementia are being "catastrophically failed" due to a lack of knowledge and understanding. Misdiagnosis remains common, with families sometimes waiting years for an accurate diagnosis. For children, this delay can mean missing out on the limited interventions or care options that do exist.
Organizations like the Alzheimer Society of B.C. are working to close these gaps. They offer resources in multiple languages and host virtual panel discussions—such as "We can be your guide: Get to know the Alzheimer Society of B.C." on January 14, 2026, and "Lived experience: What you should know about dementia" on January 28, 2026—to help families navigate the complexities of dementia care and connect with others who understand their struggles.
For families like the Scotts and the Daniels-Wilsons, the journey is marked by heartbreak, resilience, and a relentless search for hope. Their stories underscore the urgent need for greater understanding, earlier diagnosis, and more robust support systems—so that no family has to face dementia alone or in the dark.
