Bridging the Gap

People living with Down syndrome are at considerably higher risk of developing dementia as they age but have fewer supports in place to help 

Ever since Yvonne Dewar moved to Calgary 22 years ago, she’s brought her younger brother, Murray Adderley, to stay with her every few weeks. Adderley, who was diagnosed with Down syndrome at birth, lives in an assisted living home in Red Deer, Alta.

The youngest of four, Adderley has always been naturally sweet, loving, and social. But seven years ago, Dewar and her two sisters began noticing changes in their brother: he would often get stuck on an idea and needed things repeated. 

Dewar recalls driving Adderley home to stay with her for a few days. As they pulled into the driveway he asked, “Who’s house is this?”

“No, Mur, this is my house,” she replied.

“Oh, you got a new house?” he asked.

“I’ll never forget it,” says Dewar. “We’ve spent a lot of time in this house, but suddenly he didn’t remember.”

In the following months, Adderley’s sisters noticed other changes, including his withdrawal from social situations, which was very unusual for him. The signs and symptoms continued to mount, and he was ultimately diagnosed with Alzheimer’s disease that same year. 

“I just felt really, really sad,” says Dewar. “[I thought] ‘Is there not enough going on? Life has been challenging for him, and now he has this on top of it?’”

That feeling was echoed by their sister, Susan Franklin, who still lives in their hometown of Yellowknife.

“He hasn’t had things easy, but we’ve always tried to make everything as wonderful in his life as we can,” Franklin says. “But it was devastating.”

Although distressing, Adderley’s diagnosis wasn’t necessarily unique. People living with Down syndrome have a high risk of developing dementia. Statistically, 75 per cent of people with Down syndrome 65 years of age and older are also living with Alzheimer’s. People with Down syndrome are also more likely to have young-onset Alzheimer’s. The reasons why aren’t clear, but studies have shown that higher levels of plaques and tangles in brain nerve cells are a common feature associated with Alzheimer’s. People with Down syndrome have been found to have significant levels of these plaques and tangles appear by as young as age 40. 

In the seven years since Adderley was diagnosed, his family and caregivers have faced unique challenges that come from living with both diagnoses. With so many moving parts, between communication barriers and balancing medications, they work to the best of their abilities to decipher the root cause of the different conditions.

Additionally, there are currently no approved pharmaceutical drugs for this population in Canada, so the family is focused on keeping Adderley active and content.

“There’s a lot of support through the Alzheimer’s/dementia group, and lots of support for the Down syndrome group, but finding support for living with the two together is limited,” says Dewar, who praises the help from Adderley’s support workers and from the Alzheimer Society of Calgary. “Even in spite of having such a high percentage in this population, it’s limited. I’m a little bit frustrated that there isn’t more support or more training. It would be nice to talk to other people who are journeying through the same things.”

Franklin adds that, outside of a small pamphlet she found at an Alzheimer’s association and an article she saw 15 years ago, she hasn’t seen anything else discussing the link between the two conditions. 

“Having the knowledge is key, and that’s what we want,” says Franklin. 

As Dewar sits with her brother on an early February afternoon playing Yahtzee and chatting about his favourite bands, she smiles and encourages him to talk about his upcoming birthday. Adderley’s disease is still in the middle stages and he enjoys spending time with his family and neighbours, so the siblings discuss who he’ll be inviting to celebrate with him. He’ll be turning 59 this September and is planning to celebrate at his sister’s Calgary home alongside friends, family and neighbours. 

“I believe our parents up above are keeping a close eye on us,” says Dewar. “We feel pretty blessed, so hopefully things will continue to be as good as they can be.” [ ]