Folks at the Alzheimer Society of B.C. are hoping that dementia will be a topic of discussion for politicians and voters in the lead-up to the provincial election next month.
According to the society, about 85,000 people in British Columbia are currently living with dementia; that number is expected to grow to almost 250,000 by 2050.
Author Rosella M. Leslie literally wrote a book on dementia, Losing Us: A Dementia Caregiver's Journey based on her experience with her late husband, John, who lived with the disease.
With her current husband, she co-runs a Memory Café in Sechelt, a weekly not-for-profit program where persons with dementia and their caregivers can engage in exercise and conversation .
Reflecting on her experience and those of the many people she has engaged with on the topic along the way, she notes how unique each experience is.
“Every person with dementia is different, so their needs are always different,” she said.
But there is also a sameness between the stories of people who live with dementia or love someone who has it.
“It is always that feeling of being alone,” she said.
Yet most Canadians report some experience with dementia, with close to eight in 10 knowing someone living or who has lived with it, according to the federal A Dementia Strategy for Canada: Together We Achieve - 2023 Annual Report.
The society is calling on all provincial candidates from each party to commit to a new, modern and funded dementia strategy that prioritizes the following: reducing stigma and social isolation, improving the process of diagnosis and ensuring support is available at the right time.
These echo many of the issues Leslie experienced on her family’s journey or hears about from those she has met along the way.
Strategy needed
"The last time that we had a [B.C.] strategy was a number of years ago. It predates the pandemic. It predates a lot of things that have changed in the world of dementia, including the latest forecast numbers we have for the growth in number of people living with dementia," Jen Lyle, CEO of the Alzheimer Society of B.C., told The Squamish Chief.
"Frankly, we know this is an issue that matters to British Columbians.”
Reducing Stigma
Lyle said that misunderstandings about dementia lead to stigma, and that keeps people living with dementia and their families from getting the care they need.
"It deters people from getting a diagnosis. It deters people from seeking support or disclosing their illness; it deters people from seeking treatment, and that's why one of our key asks … in this dementia strategy is that we allocate some meaningful funding towards addressing stigma and reducing the isolation people can sometimes experience when they are living with this disease," she said.
Specifically, the society is asking for $10 million for a three-year province wide public awareness campaign that's focused on reducing misconceptions about dementia, including those harmful stereotypes.
"So that we can ensure that people are comfortable with having these conversations and are proactive about their brain health, just in general," Lyle said.
Improving the process of diagnosis
Lyle said the society hears from many that simply getting a timely dementia diagnosis is a struggle.
"One person we spoke with spent over 10 years trying to get a diagnosis because nobody initially really took him seriously that something was wrong," she recalled.
"We've had people who've had to struggle with misdiagnosis for years, and then we've had people who have been able to share how relieving it was to finally get an answer for why they were seeing the changes they were seeing, either in themselves or in their family member."
Improving the diagnostic experience is twofold, said Lyle.
One is having a clear clinical pathway, which includes co-ordinated support throughout the dementia journey.
Lyle said that the vision is that someone with dementia would encounter wraparound support similar to what is offered with a cancer or multiple sclerosis diagnosis.
The second piece the society would like to see in improving diagnosis is addressing the gap in staffing.
"We don't have enough geriatricians and physicians who specialize in the care of older adults. In fact, we have about half the number of geriatricians we should have right now, and we know that gap is going to widen," she said.
"The province has already successfully implemented targeted recruiting for specific healthcare professions. All we're saying is take that and apply that to this field because we don't have enough."
Support at the right time
Lyle said the society hears quite frequently from families about how difficult it currently is to navigate the healthcare system to access the support that they need when they need it.
She said there are many ways to tackle this issue, but one simple one that politicians could commit to is to eliminate the copay model for publicly funded home care.
"B.C. is the most expensive province for how the copay system currently works, and that acts as a financial barrier to people accessing home care who otherwise would benefit from it," Lyle said.
Another ask is for more access to day programs for people living with dementia.
"We still have less capacity in our adult day programs than we did before the pandemic,' Lyle said.
People living with dementia benefit from attending adult day activity sessions led by specially trained staff, she added.
This provides an opportunity for a care partner to bring the person they are providing care for to a group setting, and they can drop them off.
Some programs run for five hours. Some run for longer.
This provides respite for the person caring for the person with dementia. It also allows the person living with it to get out of the house.
"It gets them into a situation where they can connect and socialize and engage in all of those activities that we know help combat social isolation, and frankly, are good for your brain,” Lyle said.
The society is also calling on parties to commit to reviewing the Assisted Living Program, which provides housing, hospitality services and regulated assisted living services for adults who can live independently, but need help day-to-day.
"It's promising, but does it actually meet the needs of people with mild or moderate cognitive impairment, not from what we've heard," Lyle said.
"To review that program and see how it could be changed to better support people in those early stages of the disease is something that could be very impactful,” she said.
Finally, the society is also asking for the incoming government to increase the number of long-term care beds across the province, meaning adding more spots in long-term care facilities.
"If you are assessed as being eligible for long-term care, you need it now. And yet, what we then ask people is to wait and do the best you can with what you have. That's a big ask, and that puts people in those situations where they run into crisis, and they end up in the emergency department instead."
The BC Seniors Advocate noted in the Monitoring Seniors Services 2023 Report that the average wait time for space in a long-term care home is seven months.
"And we know from speaking to families across the province that it can be much longer than that, in some cases, over two years, to try and get into long-term care," Lyle said. "You're on a waitlist for long-term care. You can't get in in a timely fashion. Something happens to your family member that precipitates a crisis. You land in the emergency department. You're admitted into hospital, and then you're told they can't go home, and then they end up waiting in hospital—which is not a good place to be, especially if you're living with dementia, and you don't need to be there until they can be transferred into long-term care, and that's a pathway nobody chooses."
’In an ideal world’
If she could wave a magic wand and the society's asks granted, Lyle envisions a smooth path for people with dementia and their families.
"In an ideal world, we would have open conversations about our brain health from a very young age," she said. "We would already know as children that taking care of our brain is good for us, and we would already know and be comfortable talking about ways in which we can reduce our risk of dementia," she added.
"In an ideal world, dementia wouldn't be a stigmatized term. If we were living with a diagnosis, we would feel comfortable sharing it, and we would feel comfortable asking for help when we need it. We would have access to a diagnosis early so that our options for treatment and intervention are broad; we would have a clear pathway laid out for us so that we're not left trying to figure out on our own what it is we're supposed to do next," she continued.
"And ultimately, every family member supporting somebody on the dementia journey would have access to the resources and the supports that they need when they need it. And same goes for the person living with dementia, so that ultimately, ... [they] can have the best quality of life throughout the entirety of their journey with this illness. That would be an ideal future state. And I think it's possible. We just need to get people talking about it, and that's really the first step.”
Anyone who has questions about dementia can contact the First Link Dementia Helpline.
To learn more about what the society is calling for, head to its website.
Town hall
An Alzheimer Society of B.C virtual town hall will be held on Sept. 23 and will feature a live question-and-answer session with representatives from each political party in B.C. Register and submit questions early here.
The Squamish Chief has reached out to West Vancouver-Sea to Sky candidates for their platforms on dementia care and will publish their responses when they are received.
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