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This article was published 17/3/2018 (456 days ago), so information in it may no longer be current.
An estimated 22,500 Manitobans have been diagnosed with Alzheimer’s disease or another type of dementia and that number is growing at an alarming rate, owing to the post-Second World War baby boom.
By 2038, the number is expected to be more than 40,000. And the growing number will be accompanied by soaring costs, says community health sciences professor Banibrata Roy at the University of Manitoba’s Max Rady College of Medicine.
The researcher warns of the "dreadful impact both in terms of increased number of people suffering from dementia and the escalating health-care costs that the Province of Manitoba has to bear."
Since 2015, the total annual economic burden of dementia, which includes direct health-care costs and indirect costs, has added up to $1 billion annually, Roy calculates. By 2038, the cost rises to $28 billion annually after inflation and other costs are factored in.
With that bleak reality in the forecast, the pressure is on to find ways to stretch a dollar without sacrificing quality of care. One approach is to give front-line workers a bigger role.
In 2017, a randomized controlled trial known as SCOPE (Safer Care for Older People in residential Environments) examined the effect of empowering health-care aides to take the lead on improvement strategies within nursing homes.
The study, conducted at several Winnipeg care facilities, looked at giving the workers who provide 80 per cent of the direct care to vulnerable seniors more of a voice in how to improve residents’ quality of life.
The findings, expected to be made public in May, have been promising, according to Malcolm Doupe, a senior research scientist with the Manitoba Centre for Healthy Policy. The province is going to have to look at doing things differently — as well as adding staff — to meet the growing demands of an aging population, he said.
In less than a decade, Manitoba’s annual health-care budget has nearly tripled to $6 billion from $2.2 billion, Doupe said at a recent Winnipeg conference on dementia care. Roughly 10 per cent of the budget — $638 million — now goes to the operation of personal-care homes. Providing an extra 15 minutes of care per day per resident would add $50 million to the budget.
The SCOPE study looked for ways to improve quality of life and measured them by noting changes in things such as residents’ mobility and pain levels. In one example, health-care aides at one home recommended that doors dividing the dining room be removed; that helped to reduce the amount of agitation residents were experiencing at meal times, the conference heard.
"I was a health-care aide for 20 years and this is the first time anyone has listened to me," said one front-line worker involved in the study.
The Alzheimer Society of Manitoba has spent years trying to help the province to prepare for the oncoming wave of diagnoses.
"We had a dementia framework," said chief executive officer Wendy Schettler.
It was developed by service providers and stakeholders to manage the rising number of people living with dementia in the province. It cast the challenge as a community priority that needs to be funded. Premier Brian Pallister’s government has made health- and home-care reform a top priority, and advocates are waiting to see what happens with the framework.
"If we’re not adequately meeting needs now, how can we think we’ll be ready as these numbers increase dramatically? We need to identify this is a priority and adequately fund it. That means significantly increased dollars to home care, new affordable housing, increases to personal-care homes and we need to have people training," Schettler said. "This is complex."
She pointed to Riverview Health Centre as an example. Last June, it announced a redevelopment of its 60-bed Alzheimer’s- and dementia-care unit into an Alzheimer Centre of Excellence. It will incorporate the latest innovations and research to better support residents in co-operation with University of Manitoba research into what works best. Riverview said the plan is to be a blueprint for other health centres.
"We have got pockets of some really good things," said Schettler. "We have to scale it up so it’s system-wide."
It’s important that the community at large understands what’s happening and what role it needs to play.
"People need to learn about what is dementia, and to support people in their midst with dementia and support their caregivers, as well," said Schettler. "As taxpayers and community members, are we willing to say this is important?"
"We need to recognize that people can live in and contribute to their community. We don’t want to write people off because it’s a progressive, degenerative disorder. We need to respect the rights of people to participate in their community and to have supports and services. I believe it’s a human-rights issue."
And it’s a practical issue that delays people from having to move into costlier care-home beds, she added. "We know that staying socially engaged impacts on your well-being."
We don’t want to write people off because it’s a progressive, degenerative disorder. We need to respect the rights of people to participate in their community and to have supports and services. I believe it’s a human-rights issue.” -Wendy Schettler
That’s why the organization runs programs such as Minds in Motion, which helps people with dementia stay socially connected, and Dementia-Friendly Communities, which is educating the public on how to include people with dementia and better serve them.
The Alzheimer Society of Manitoba has provided services to an estimated 124,000 Manitobans, and relies on donations for 85 per cent of its funding, but much more help is needed going forward, Schettler said.
"We have to make sure that all communities are being served," she said. "We need to do a lot more."
The province says it’s working on a plan to deal with what’s coming.
In an email statement, Manitoba Health said it "remains committed to ensuring that there are a range of long-term care options for Manitobans."
"We are working on a number of initiatives with long-term planning in mind, including working with our federal partners on dementia surveillance, participating in the recently-announced National Dementia Strategy and providing dementia education to staff working in long-term care."
Last June, after years of advocacy by many groups, Canada became the 30th nation out of 194 World Health Organization members to announce that it would develop a dementia plan. The Alzheimer Society of Canada has long called for a national strategy to enhance research efforts and ensure access to quality care and support across the country. Now that Canada has committed to such a strategy, work begins on implementation, the society said.
Winnipeg police officers have plenty of experience dealing with people who have dementia, whether the calls involve someone who is aggressive and potentially violent or, more often, missing.
"It’s one component of an awful lot of issues we deal with," said Const. Rob Carver.
When a child is abducted and in imminent danger, police can issue an Amber Alert that breaks into radio and TV broadcasts to notify the public. If a person with dementia-related illness goes missing and is in danger, some communities issue similar alerts. Winnipeg police are in the early stages of setting up a silver alert program, Carver said.
For now, police continue to issue public advisories when someone goes missing. They can’t say in the advisory if the missing person has a form of dementia because that would be a violation of the Personal Health Information Act.
"We use a matrix to analyze missing persons cases and if they have mental heath or cognitive issues, that changes the response. We’ll be much quicker to issue a public advisory," Carver said, adding officers are on a heightened alert for the vulnerable adults.
"We’ve all got families," he said. "Most of us are touched by seniors who need special care."
Earlier this year, Winnipeg police joined forces with MedicAlert in effort to better locate lost or missing people living with autism, Alzheimer’s disease, dementia or brain injuries.
The partnership gives police 24-hour access to a registered subscriber’s photo, identity, past wandering history and other vital information to save time if they go missing.
Canadians aren’t prepared to cope with a dramatic increase in the number of baby boomers with dementia in the coming years, says a leading dementia doctor in Manitoba, where the increase is expected to exceed the national average.
"There’s a lot of formal care that they require, whether it’s home care, families taking time off work to assist them, hospital admissions or institutional care," said geriatric psychiatrist Barry Campbell.
And more needs to be done to prepare the rest of society — the service industry, public services, community groups and neighbours, he said.
"There certainly isn’t any leadership being taken by civic, provincial or federal governments," he said.
Campbell said he is encouraged by the Alzheimer society’s Dementia Friendly Communities project, which provides public education on methods to include people with dementia so they can remain part of the community.
"The idea behind it is to have people in all stations of life aware of some of the difficulties, so they can ease the load these people are having to deal with," said Campbell, who offered a few examples, including store cashiers, bus drivers, police officers and librarians.
"Give them some education to recognize when people may be struggling with some cognitive impairment and how to react in an appropriate way," he said.
The Dementia Friendly Communities initiative aims to help the public be aware of the rising number of people in their midst with cognitive impairment.
"The community needs to be prepared," said Alzheimer Society of Manitoba education manager Jennifer Vincente-Licardo. She meets with community groups and visits workplaces to deliver a primer on dementia, helping people understand what someone with dementia is experiencing and educating them on how to help and include them in the places they work, live and play.
One exercise she gets groups to do is to look in a mirror to trace a star shape. The mental gymnastics required hint at what it’s like for people with dementia to perform certain tasks. "It’s a very difficult task to finish the star," she said.
The outreach program offers tips, which stress empathy, on how to approach someone who appears confused or lost.
"Introduce yourself and say, ‘I noticed that you seem to be lost. Can I help you get back home?’ Say you’re concerned about them." If they’re lost, not appropriately dressed and don’t know where home is, then call 911, she said.
People living with dementia and Alzheimer’s can get lost in familiar places, she said. Making signs for entrances, exits and washrooms easier to see and understand helps and so does slowing down a fast-paced communication style.
A street patrol and a church are two of the local groups making an effort to be more dementia friendly.
The 204 Neighbourhood Watch started by Winnipeg’s Filipino community performs weekly street patrols and wants to be proactive, said organizer Leila Castro. While the group has not dealt with any specifically related incidents yet, members want to make sure they know how to help when they do.
"Jennifer helped us gain awareness about dementia and in how to help people with the condition," Castro said, adding she wants the the Filipino community to have a deeper understanding of dementia and to know what help is available when family members begin to show symptoms.
Making signs for entrances, exits and washrooms easier to see and understand helps and so does slowing down a fast-paced communication style.
Crescent Fort Rouge United Church invited the Alzheimer Society of Manitoba to conduct a "dementia audit" there and offer Dementia Friendly Communities training sessions, said Rev. Irene Greenwood.
The dementia audit looks at things such as signage to make sure it’s clean and easily understood, Greenwood said. "We’re hoping to find out ways in which we may be able to make it a dementia friendly building," she said.
"Like many churches, our numbers are dwindling and smaller than we used to be. On a Sunday morning, there might be 100 people, and half are probably seniors."
The church that made headlines a decade ago for providing sanctuary to a large family of refugee claimants facing deportation has shifted its focus to ministering to and with seniors.
"It’s where we most want to concentrate our energies — involving seniors in meaningful activities and ministries," she said.
Some activities include connecting with kids at the daycare inside the church, she said. Their pastoral care committee also reaches out to members in care facilities and their homes.
"A few of our people do have dementia and we’re trying to help people feel a little more comfortable visiting our people who have dementia."
Manitoba Public Insurance is on the lookout for drivers with cognitive impairment.
Cognitive impairment is the medical condition with the highest risk of causing an at-fault collision, Dr. Neil Swirsky noted in a MPI-sponsored presentation on dementia and driving last year. The University of Manitoba emergency medicine professor and driver-fitness adviser to the public insurer said people with dementia often drive too slow, make inappropriate stops and unsafe lane changes and have trouble with lane positioning and making turns — especially left turns.
Motorists with medical conditions such as dementia generally require a functional assessment, in addition to a medical assessment, to determine their fitness to drive.
Functional assessment programs such as DriveABLE look at the functions required to drive a vehicle and can reveal subtle, persistent impairments that a doctor’s exam might miss.
Families are advised to watch for high-risk driving errors and a lack of insight and to talk to the driver and notify MPI, which may result in an assessment.
If they pass, no further testing is required, but they will be kept on an annual medical recall. If the assessment is inconclusive, the next step is a road test. If they fail, their licence is cancelled. They can ask to retake the test once or appeal to medical review committee.
MPI has been tracking the number of driver’s licences suspended because of cognitive impairment since 2013. In the last three years, suspensions have gone up slightly — from 430 in the 2015-16 fiscal year to 439 so far this fiscal year, which ends March 31.
Manitoba’s dementia picture would be much worse if the population overall wasn’t getting healthier, geriatric psychiatrist Barry Campbell says. In fact, people are less likely to develop dementia now than was the case two decades ago.
"One of the reasons is there’s a lot of interplay between cardiovascular disease and dementia. Fewer people are smoking and more have active lifestyles," he said.
More mid-life treatment of hypertension, high cholesterol and obesity are also helping to reduce dementias, he added.
But that hasn’t reduced the fear of getting the disease; baby boomers worry more about getting dementia than cancer, a national survey in the U.K. found. Campbell understands that fear.
"There’s an awareness that the most important things we’re able to do is think and move," he said. "As long as you can, you can have a fairly good life, in terms of relationships and activity. If you lose one of those two, thinking is probably the most important."
Campbell said it’s hard to compare one illness to another, but with cancer "you don’t lose the ability to self-determine."
"We don’t like other people to be making decisions for us. In dementia, that happens. Other people are making the decisions. That’s why it’s important for people in the early stage to make decisions (and let others know)," he said.
Doctor-assisted death is not an option for people with dementia. No jurisdiction in North America allows patients to consent to life-ending treatment in advance.
The federal government has said it would review Bill C-14, the medically assisted dying legislation, to examine issues surrounding requests for medically assisted death made by mature minors, patients for whom mental illness is the only medical condition and advance requests. It’s expected to file a report in December 2018.
Dying with Dignity Canada is calling on Ottawa to allow advance requests. Having the right to consent — while still sound of mind — to life-ending treatment later will help ensure patients with progressive or terminal illnesses won’t have to choose between taking their own lives while they’re still able and enduring months or years of unwanted suffering and indignity, the advocacy group says.
The scientific director of the Canadian Institutes of Health Research’s Institute of Aging and chairman of the World Dementia Council says amid all of the bad news there is cause for optimism.
"I’m sure we’re heading towards cures," said Dr. Yves Joanette of Montreal, adding his use of the plural is necessary because there are many forms of dementia and each affects people differently. "It’s a very complex enterprise.
"I’m really more optimistic now than five years ago, because the research community now understands that embracing that complexity is the way to go. That will be fruitful in the coming years."
Researchers around the world are working together now, he said.
"We’re all energized by the fact that even though the challenge is immense, we can feel there’s a global alignment more and more that will benefit everyone.... We will be able to stop or correct processes very early in the disease with a cocktail of approaches — pills and other behavioural intervention, lifestyle habit recommendations — a global approach which will have to be adapted to each type of disease."
"We have to help those with signs of dementia that have started and try to slow it down and try to stop it. We have to make sure there is the best help and services and support for people living with dementia and their caregivers.” - Yves Joanette
Young researchers are keen to make significant contributions and more data is being analyzed to look for patterns.
"There’s no way that one province or one sector will crack the code of such a massive enterprise," he said.
But until they crack the code, a balanced approach is needed, Joanette stressed.
"In the meantime, we have to help those with signs of dementia that have started and try to slow it down and try to stop it. We have to make sure there is the best help and services and support for people living with dementia and their caregivers."
Joanette, 64, has a personal connection to the disease; it claimed his father. He was among the caregivers.
There is a need for more public education and awareness, he said, to ensure people have a better understanding of what someone living with dementia is going through. For now, there are preventative measures to take. A lifestyle that’s good for the heart is also good for the brain — and it’s good to exercise both, he said.
"If one maintains good intellectual activity — being active and challenging the brain with new things like learning a new language, you can resist dementia, but it will not cure the disease."
And not everyone who gets old will get dementia, Joanette said.
"It’s important that readers understand that this is a disease — this is not normal aging," he said. "There’s an immense increase in centenarians in Canada and many of them do not have dementia."
Carol Sanders’ reporting on newcomers to Canada has made international headlines, earned national recognition but most importantly it’s shared the local stories of the growing diversity of people calling Manitoba home.
A recent Leger-led survey for the Alzheimer Society questioned 1,500 Canadians between the ages of 18 and 65 online and found that:
• almost 50 per cent of Canadians would not want others to know if they had dementia.
• almost 46 per cent of respondents would feel ashamed or embarrassed if they had dementia, while 61 per cent of those surveyed said they would face discrimination of some kind.
• 25 per cent said their friends and family would avoid them if they were diagnosed with dementia.
• Fewer than five per cent said they’d learn more about dementia if a family member, friend or co-worker were diagnosed.
The survey said people with Alzheimer’s disease or another form of dementia are likely to:
• be ignored or dismissed (58%);
• be taken advantage of (57%);
• have difficulty accessing appropriate services or supports (56%)
• feared or met with distrust or suspicion (37%).
• 56% of Canadians are concerned about being affected by Alzheimer’s disease.
• The greatest concern is fear of being a burden to others, losing their independence and the inability to recognize family and friends.
• Only 39% would offer support for family or friends who were open about their diagnosis.
• Three-in-ten Canadians (30%) admit to using dementia-related jokes.
Source: Alzheimer Society of Manitoba