A newly formed Ontario Dementia Task Force is bringing together more than 35 organizations from across the province to design a co-ordinated care model for people living with dementia and their care partners. The Alzheimer Society of Ontario and the Brainwell Institute are leading the partnership.
‘Hours and hours on the phone’
Saskia Sivananthan, chief executive officer of the Brainwell Institute, said people struggling to navigate the current system have driven the creation of the task force.
“What we heard, we speak to people living with dementia and their care partners every day is they are spending hours and hours on the phone trying to co-ordinate care for their loved ones, access the right services, when and how they need it, and they are struggling,” she said.
Sivananthan said families are waiting months, if not years, to receive a clear diagnosis and then to figure out what to do next.
She told CTV News that the task force was brought together because the root cause is a lack of an integrated, co-ordinated approach with accountability at the provincial level.
Bringing together diverse partners
The group includes acute hospitals, specialized geriatric services, mental health supports, home and community care, assisted living providers, the medical association, family physicians, the College of Family Physicians and nurses.
“We are working in partnership with the Alzheimer’s Society of Ontario, who’s helping host and convene everyone,” Sivananthan said.
She said that dementia crosses many boundaries and is not a health only condition.
“When you have dementia, your housing is impacted. Your transportation is impacted. Your ability to manage other conditions are also impacted.”
— Saskia Sivananthan, Brainwell Institute CEO
Sivananthan said the task force has adopted a collective impact approach, bringing all these organizations together to identify the best possible way to co-ordinate care and support the government as it moves forward.
Challenges of diagnosis, especially in the north
Dr. Joanne Clarke, the first geriatrician in northeastern Ontario, is co-chair of the task force. She said obtaining a diagnosis of dementia anywhere in the province is currently a challenge.
Clarke said early identification can be difficult and many people do not want the label.
“They may not know how to access care,” she said.
“They may not think there’s anything we can do for them and so they may not want to bother. Sometimes there’s worry about losing their driver’s license and that can be a barrier to diagnosis.”
Clarke told CTV News that the landscape for dementia care is changing, with biomarkers allowing much earlier identification and new disease modifying therapies that are more resource intensive but more effective.
“That is not something we’ve ever had before for dementia,” she said.
Clarke said many people wait months if not years for a diagnosis and the situation is amplified in northern Ontario.
“People sometimes live hours away from services, from specialists, from specialized care. We might want people to travel very long ways. It’s harder to deliver services in northern Ontario,” she said.
Clark also explained that as people progress through their dementia journey, they need support, respite and potentially behavioural supports, which is very hard to deliver across a large geography with smaller numbers.
Looking ahead to provincial recommendations
Clarke said rates of dementia will triple by 2050 and the crisis will only worsen without a proper system in place.
Over the next year, the task force will map and understand how other major conditions in Ontario have been co-ordinated. It will provide recommendations to the government to hopefully influence the Improving Dementia Care in Ontario Act.
“I’m really confident in the advice that that group is going to be able to give us moving forward,” Clarke said.
“I couldn’t imagine a better way to do this.”
— Dr. Joanne Clarke, the first geriatrician in northeastern Ontario
More information is available on the Alzheimer Society of Ontario’s website.
