It is one of the most dreaded and misunderstood of illnesses, and health care experts are projecting a dramatic increase in Alzheimer’s disease and related dementias over the next two decades as the population ages.
In Sault Ste. Marie and Algoma District in 2012, there were 9,710 people diagnosed with dementia, and by 2020 that number is projected to increase by 27 percent, according to data provided by the local Alzheimer Society, statistics that executive director, Terry Caporossi, described as “pretty staggering”.
He added that figure likely is much higher when you include those who have not been diagnosed.
Caporossi pointed out that in our region with its “fairly elderly population, our numbers are going to grow substantially.”
Currently there are 747,000 Canadians living with Alzheimer's disease and other forms of dementia, of which approximately 200,000 over age 65 live in Ontario.
That number is expected to increase to 1.4 million by 2031.
Worldwide, according to Alzheimer's Disease International's projections, the number of people living with dementia will triple over the next 40 years, from 44 million to 135 million people by 2050.
The Alzheimer Society also reported that in Ontario caregivers of those with dementia provided three times more care contributing to 100 million unpaid caregiver hours in 2013.
Caporossi noted too that people with dementia related illnesses are intensive users of Health Care resources.
They are two times more likely to be hospitalized compared to seniors without the disease; they are two times more likely to visit emergency departments for potentially preventable conditions; they are twice as likely to require alternate levels of care when hospitalized; and they are more than three times more likely to visit hospital emergency departments because of falls.
In its January public awareness campaign, the Alzheimer Society focused on several key goals.
Caporossi said a primary focus locally and across Ontario was to educate the public about Alzheimer’s disease and dementia, and to breakdown societal stigmas around the illnesses.
“The more we are able to educate people in our community, the more we are able to talk about Alzheimer’s disease and related dementias, the more information we can provide to the persons who have been diagnosed, and to caregivers, the better the journey will be for them down the road,” he stressed.
Cathie Randell, one of two First Link coordinators with the Sault and Algoma Alzheimer Society who provides support and education for professionals and patients, acknowledged that Alzheimer’s disease and related dementia are among the most feared and misunderstood illnesses.
“The most common misunderstanding is the difference between Alzheimer’s and dementia,” Randell said. “We have people say things like my father only has dementia, as though that is somehow less serious. Really, what dementia signifies is a set of symptoms: memory problems, lack of reasoning, and judgment. Alzheimer’s disease has the symptoms of dementia and is the most common form.”
About 65 percent of all patients diagnosed with a dementia related illness presently have Alzheimer’s disease, first identified by the German neurologist, after which it is named, in 1906.
Alzheimer's disease is a fatal, progressive and degenerative disease that destroys brain cells.
Alzheimer’s disease progresses gradually through three stages, lasting anywhere from two to 20 years, but mostly commonly from seven to ten years.
There is no cure yet for Alzheimer’s, but there are medications and lifestyle changes that can help slow its progression.
Although Randell said there is no blood test or simple way to diagnose the disease, doctors have tools to make fairly accurate diagnoses.
She added that sometimes cat scans might reveal signs of abnormal shrinkage of the brain, one of the characteristics of the disease.
The only way to confirm the disease, however, is by an autopsy after death.
Both Randell and Caporossi pointed out another commonly held misconception is that memory loss is among the most conspicuous early signs of Alzheimer’s disease.
Randell noted that some memory loss occurs in most people above the age of 65.
“We all have this idea as we get older that our memory will not be as good. There are actually ten warning signs,” she said. “Because we associate Alzheimer’s disease with memory loss, that sometimes clouds what is going on and prevents people from going to the doctor and getting an early diagnosis.”
The more reliable early warning signs of Alzheimer’s disease include a loss of critical thinking skills and impaired judgment that, according to Caporossi, reveal themselves in things like a decline in a person’s ability to do everyday tasks around their home like cooking and cleaning.
While medical professionals have not pinpointed any one specific cause of the disease, clearly aging is a major factor. Alzheimer’s disease can affect people as young as 40, but the overwhelming majority of those diagnosed are 65 and older, affecting about one in ten seniors in Ontario.
Another factor that may contribute to the disease is genetics.
Research is being done on other factors, according to the Alzheimer Society, such as existing diseases or conditions that the person may have, infections, toxins in the environment, education level, alcohol and tobacco use, diet and exercise.
While the disease cuts across all races, ethnic groups, socio-economic classes, and gender, Caporossi said that in Algoma, with our aging demographic, there is a ratio approximately of 60 females to 40 males diagnosed with Alzheimer’s that reflects the higher population of older women.
One of the obstacles Randell pointed out has been that funding for research into the disease lags behind investments in other major illnesses.
“We don’t get the funding that the big guns like cancer, heart disease, diabetes, and HIV Aids get. I don’t know why that is. I am sure there are a slew of things that contribute to that situation,” she said.
Nevertheless, that may be changing.
She noted that in Canada recently there is some great research underway.
Caporossi said that during the recent Alzheimer Society campaign, beside increasing public awareness about the disease, an important goal was to lobby both the Federal and Provincial governments to direct more resources toward what they predict is a looming health care crisis.
Among the three strategies they are advocating from the Ontario government are: making dementia patients and their families a top priority in the upcoming Ontario budget; providing more staff and training for those working with patients in long-term care facilities; and creating more equitable and standardized wait-times for access to long-term care facilities across the province.
On the latter point, Caparossi said wait-times to get into a long-term care facility varies anywhere from 46 to over 300 days across Ontario.
Randell said she had heard some long-term care facilities have wait-times up to five years depending on the type of bed needed.
Caporossi said the Alzheimer Society also is pushing the Federal government to develop a national strategy to address the disease.
He said the CEO of Canada’s Alzheimer Society, Mimi Lowi-Young, attended a G-8 meeting in December called by the British Prime Minister, David Cameron, to discuss plans to deal with the health care crisis globally.
There are, according to a CBC report, 13 countries with national dementia strategies, and Canada is not among them.
Randell added, “We want a national strategy so we can shine a light on this illness.”
She said, however, that both the Federal and Ontario governments have begun to respond to the rising needs of Alzheimer and dementia patients, and for specialized staff training with recent investments. “I think our governments are stepping up to the plate.”
She noted the Federal government had committed in its February budget to provide $15 million more annually to the Canadian Institute of Research.
The Province also made $10 million available in December for professional training that is being effectively used locally.
[For details on how both levels of government are responding to the dementia crisis, see related interviews with Federal MP Bryan Hayes, and Provincial MPP David Orazietti.]
Caporossi acknowledged that both levels of government are recognizing the challenges, especially financial, that are a result of an aging population across Canada.
He noted, “When you look at the number, and growing rate of aging people in Canada, there are not enough resources or facilities to house people with degenerative diseases such as Alzheimer’s and related dementias.”
Caporossi said his organization would be watching closely the upcoming Ontario budget for more resources to be targeted toward patient care and treatment.
“If the budget doesn’t come through, we want to make sure it becomes an election issue,” he said. “We’ve had the support from David Orazietti, our local MPP. He signed a letter on behalf of the constituency indicating to Premier Wynne and the Finance Minister that the government needs to continue to put resources towards those that have Alzheimer’s and dementia related diseases.”
One of the consequences of long-term care wait times and bed shortages both Caporossi and Randell addressed too is the stress it is placing on the Sault Area Hospital and on family caregivers.
Caporossi noted that although our population is smaller than many communities, we have a higher demand locally for long-term care beds because of our age demographics, which are above the Provincial average.
He said the hospital is not the best location for patients awaiting long-term care spaces, and it’s those people who often end up in crisis.
He said that although people in their own homes are doing better, it often contributes to family caregiver burnout.
“Many of the people our staff see are either a husband or wife who has taken on a caregiver role. They are getting burnt out to the point that if something doesn’t change, they’re going to end up in hospital.”
Randell said that when family caregivers looking after loved ones with Alzheimer’s disease or dementia disorders are struggling, one option is to provide more home support.
She said, however, in some circumstances the only alternative is the hospital until long-term care space becomes available.
“I think the SAH would rather see them in long-term care homes as well.”
Both Randell and Caporossi reiterated that although people fear Alzheimer’s disease and related dementia, the key to the treatment options that do exist is early diagnosis.
Randell said that she had one close relative of an Alzheimer’s patient describe it as “a very long goodbye. I thought it was the perfect way to describe the disease because you very slowly lose a little bit of the person. I think it is harder in that way than an acute illness.”
Nevertheless, Caporossi and Randell emphasized that during the early stages of the disease most people can continue healthy and normal lives for several years.
Although there is no cure for Alzheimer’s disease presently, there are medications and lifestyle changes that can slow down its progress.
It is only in the second or third stages of the disease where individuals usually begin to require more support, or relocation to a long-term care facility with the specialized resources and training to help them.
Also, with both senior governments increasing their resources toward research, professional training, and patient support, the hope remains that better treatments or a cure will be found.
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