York Region under-served when it comes to dementia care: Alzheimer Society of York Region

More investments need to be made in York Region for dementia care, according to the Alzheimer Society of York Region.

The Aurora-based Society, which provides myriad programs out of its Edward Street location and throughout York Region, says recent reports, such as one that came out of the Brainwell Institute last month, have shown inconsistencies in such services across the country, but reflect the Region as well.

“You can live in a particular part of the Region and have access to certain services, but not in another area of York Region,” said Alzheimer Society of York Region Executive Director Kari Quinn-Humphrey. “The report also shows we really need to have a care pathway that is accessible to everyone, no matter where you're living in Canada.”

It's not that it can't be done. Quinn-Humphrey cites existing nation-wide networks for cancer and stroke care, to name just two, but said this type of consistency was needed on the dementia front as well.

This is a view shared by Alzheimer Society of York Region's Andrea Ubell.

Ubell, who has been with the organization for more than two decades, says this lack of Regional consistency has long been an issue.

“We do not in York Region have a memory clinic and a memory clinic is where people tend to go early,” says Ubell. “We don't have one in York Region and people in York Region either head down to the Toronto Memory Program in North York…or they have to go to Whitby, which has a memory clinic.

“We don't have anything in York Region, and we don't even have MINT Clinics, which are family practice. This is a really interesting initiative where the Alzheimer Society is involved with the family practice teams and they have these clinics where sometimes people can get diagnosed early. We don't have that in York Region [but] what we do have, and I am thankful because I was here before anything was here, is geriatricians and geriatric outreach at all three hospitals, and we have geriatric psychiatrists, but to get into them is a very long wait. I had a client recently tell me they've waited a year-and-a-half to get in and mom was diagnosed mid-stage. What we see at our doors are people are mid-to-late stage.

“If you want my perspective, because I have been at the table where we've been applying or research dollars, the last one was about 12 years ago; we had Whitby on board, we had the Region of York on board and it didn't fly. I think it might have been finances, resources. The Mint Memory Clinics rely on family doctors taking this on and nobody wanted to take it on. We wanted to have an extension of Whitby over here… York Region is sadly under-served compared to other areas. We had a client come over here from Peel where she was getting six, seven hours of respite for free. She came here and we're managing to provide her with two hours a week at a cost of $10, which is very reasonable, but that's not meeting her need.”

That said, however, there have been strides in the right direction.

One such positive step forward cited by Quinn-Humphrey is the development of the local Ontario Health Teams (OHTs) and its Palliative Care Working Group, which is also looking at palliative care for those living with dementia.

“It's just nascent, it's just starting, and we're trying to address some of those needs,” says Ubell. “It's a challenge because a lot of families don't realize it is a fatal disease. There is a lot of educating and a lot of stigma that we have to work against. I think it is encouraging to know that our local OHT right now is working on palliative care.”

The OHT was an early supporter of the Society's First Link program, which was established to help those newly-diagnosed with dementia get the help they need as soon as possible.

“They paid for two First link coordinators, which has helped; we also did an at-home visiting project because of COVID and that has been spun into CHATS getting an at-home visiting… they're not big enough; they're recreation programs, but it's a start.”

Also helping to address the gaps and keeping minds active is the Active Living Program, which Quinn-Humphrey helped to establish when she came to the Alzheimer Society of York Region two years ago.

Ubell says, as the program continues to unroll, they're hoping to reach people who are at the earlier stages of the disease, along with their care partners, to provide social opportunities.

The program will soon be offered in additional languages, including Cantonese and Mandarin, to reach a greater number of people, and they are continuing to forge partnerships with community organizations – such as the McMichael Gallery – to expand creative horizons.

“We do yoga, tai chi, music programs, walking programs and we didn't have that before,” she says. “Again, it's privately funded, it's not government, but it has been a game-changer for many of our clients because, if we can get them used to us earlier, then they come into our day programs eventually.”

By Brock Weir
Editor
Local Journalism Initiative Reporter