University of Alberta researchers are teaming up with the University Hospital Foundation and patient groups to create a simpler care pathway for people living with dementia so they can get an earlier diagnosis, start treatment sooner and slow progression of the disease.

“Early recognition and detection of symptoms allows you to make lifestyle changes and take prescribed treatments that might delay the progression or deal with underlying risk factors,” says principal investigator Adrian Wagg, professor of geriatric medicine. 

Up to 50 per cent of risk may be mitigated by healthy aging behaviour such as managing diabetes, blood pressure and heart health; doing regular exercise; and engaging in intellectual and social stimulation, says Wagg.

“We know that social isolation and loneliness will increase the progression of cognitive impairment and increase stress for family members,” says co-principal investigator Holly Symonds-Brown, assistant professor of nursing and member of the Neuroscience and Mental Health Institute, who notes that most people with dementia live at home and would benefit from “social prescriptions” for community-based activities. 

The team has been granted $1 million by the Government of Alberta’s Primary Care Innovation Fund and additional ongoing philanthropic funding from the University Hospital Foundation to complete their project over four years. 

“The University Hospital Foundation is proud to partner with Drs. Wagg and Symonds-Brown and the Government of Alberta on this urgently needed project,” says Jodi Abbott, president and CEO of the University Hospital Foundation.

“Investing in dementia care is not just about improving health outcomes — it’s also about providing hope, preserving dignity, supporting families and building a compassionate future for aging Albertans. This project has the potential to do that, and that’s why we’re providing critical ongoing funding.” 

It’s estimated that nearly 800,000 people in Canada live with dementia, and that number will grow to a million by 2030, according to the Alzheimer Society of Canada.

“When you establish a diagnosis and you get the right care pathway, you get better quality of care and a better quality of life,” says Wagg.

Overcoming stigma, seeing potential for growth

The pair will carry out their complementary projects with the Kaye Edmonton Clinic in Edmonton and the McLeod River Primary Care Network, which has offices in Whitecourt, Edson, Mayerthorpe and Fox Creek. 

Wagg will work with patient groups such as the Alzheimer Society to better understand how patients are currently getting diagnosed and create an ideal “pathway” that will eventually include registered nurses as “navigators” for both patients and their families. This mirrors what already happens in cancer patient navigation, for example. Wagg will also set up a registry of patients who are willing to participate in future research.

Symonds-Brown will follow 20 newly diagnosed patients in Edmonton and five in Whitecourt to learn about the supports they use over time — such as home care, recreation centres and day programs — and then work with families and patients to map resources for other patients and suggest new ones.

Symonds-Brown says families are often the first to notice early signs of dementia, such as losing the ability to plan ahead or manage complex tasks such as cooking or using a remote control. 

She says stigma may keep patients from seeking help, but an early diagnosis can have many benefits aside from delaying symptoms.

“It can help people prepare by understanding what their wishes are, what’s most important to them and what they want to be able to keep doing,” she points out. 

“A dementia diagnosis is often talked about only from a standpoint of loss,” she says. “That’s not to downplay that this is a significant terminal illness. Dementia is a degenerative condition. But it can take a long time, and in the meantime patients continue to be part of our social world, so growth can still be there along with the loss.”

From a private to a public concern

Both researchers note that although the rate of dementia cases is falling due to improved overall health, the number of cases is increasing rapidly because of Alberta’s aging population. 

Wagg is hopeful that most people will be able to get an early diagnosis and the care they need from their primary care clinic, thanks to the support of the nurse navigators.

“We simply don’t have the number of specialists to deal with everyone with a dementia diagnosis, so the idea of the care pathway that includes specialist nurses is that we can cater for the individuals with a dementia diagnosis without them all having to be referred for secondary care,” says Wagg, who is a member of the Women and Children’s Health Research Institute and the Cancer Research Institute of Northern Alberta.

“Both primary care physicians and people living with dementia say there’s a definite need for this.”

The researchers believe their model will prove cost-effective and sustainable for use across the province. 

“Right now dementia is a private concern, and as long as it remains a private concern, I don’t think we’re going to see the change that we need to improve quality of life,” says Symonds-Brown. 

“It needs to become a public concern. Dementia goes beyond health care and needs to be thought of as a social issue.”