My brother Kevin was happy, kind and funny. He loved the Toronto Blue Jays with a passion. His favourite treat was a Diet Coke. He was a cherished member of our family who was deeply loved and shared his love of life with everyone he met.
Kevin was born in 1964 with Down Syndrome. In those days, parents were often encouraged to place children with developmental disabilities in institutions. My parents were offered that option. They refused. Kevin was their baby, and he came home with them. He remained part of our family for 57 years.
Like many people with Down syndrome, Kevin experienced accelerated aging. In his final year, the changes were gradual but relentless. He lost weight. His hair thinned. His energy faded. Eventually, he began having seizures. When you love someone deeply, decline doesn’t always look like decline. It looks like a bad week, a phase, something that will pass.
It wasn’t until a neurologist at the hospital finally named it that the pieces came together. Kevin’s physical, cognitive and behavioural changes, I was told, were likely signs of dementia.
I was stunned. Not because the explanation didn’t fit, but because I hadn’t allowed myself to see it. Dementia felt like too much to absorb on top of everything else. Only later did I realize how common this diagnosis is among adults with intellectual and developmental disabilities. People with Down Syndrome face a much higher risk of developing Alzheimer’s disease than the general population. Yet, this reality remains poorly understood, even among those working closest to them.
During Kevin’s last year, there were many hospital visits. We were responding to falls, possibly from seizures, weight loss, sudden changes. Dementia never entered our conversations, not mine, not his support workers and not initially within the health system. We were reacting to one crisis at a time, without a coordinated picture of what was happening to Kevin as a whole person.
Still, we were fortunate. Along the way, we encountered extraordinary kindness. Emergency department doctors who took time; nurses who treated Kevin with dignity; staff who were patient and respectful. His support workers, who cared for him around the clock in his residence, were exceptional, engaged, compassionate and deeply committed to Kevin.
Dementia did not erase the value of relationship-based care. But as the Mind the Gap report by the Brainwell Institute makes clear, the absence of clear pathways for treatment had capable people with years of medical training doubt themselves.
When Kevin went to the emergency department after another episode, I did not realize it was for the last time. He was hooked up to various machines with lots of monitors beeping. The nurses were gentle and made a point of telling me they would take good care of him.
On the second day, I asked the doctor if we should have a consultation with a neurologist. She looked at Kevin and told me, “He may not recover.” I was stunned. It had not occurred to me that Kevin would not leave the hospital as we’ve done many times. Before I left, I made sure to tell Kevin how much he was loved by his family and friends. The doctor was correct. Kevin passed away the next day.
This is where my personal experience meets a larger, systemic problem.
Across the country, we talk about dementia more than we used to, but too often, conversations remain fragmented. Diagnosis happens late. Caregivers are left to navigate uncertainty on their own. People with intellectual and developmental disabilities are rarely at the centre of planning, despite their higher risk and unique needs. The result is a system that reacts instead of prepares.
There is growing evidence that better coordination, earlier identification and clearer care pathways can ease the burden on families, support workers and health systems alike. The cost of not doing this is paid quietly, in emergency departments, in group homes, in caregiver burnout and in families learning too late what they wish they had known sooner.
It would not have changed Kevin’s outcome. But it could have changed his journey – and ours.
