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Navigating the world of degenerative illness: Conference focuses on helping patients and caregivers – Ottawa Citizen

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“I’m not saying it’s society’s problem, but there should be recognition of the load that caregivers are taking.”

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When former CEO Bruce Wood was diagnosed with young onset Alzheimer’s disease in 2016, he made a point of talking publicly about the illness to help others. When he could no longer do so, that duty fell to his wife, Lisa Raitt.

The former senior federal cabinet minister, lawyer and mother has made speaking about her husband’s illness part of her busy life, even when it is difficult, which it often is. She sees it as a duty to help people better understand the disease and to support caregivers like her.

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“I always accept these invitations.”

Raitt will be keynote speaker at an Ottawa conference this weekend aimed at helping patients and their caregivers navigate the often complex systems of care once they are diagnosed with neurological illnesses such as Alzheimer’s.

The Enhancing Access to Care conference, sponsored by the University of Ottawa’s Brain and Mind Research Institute, will include sessions on barriers to accessing care for rural residents, the latest research for neurodegenerative illnesses, including Parkinson’s disease and dementia, information on the regional geriatric program and Raitt’s talk on the challenges of care for young-onset Alzheimer’s.

The conference is a recognition of the difficulties patients and their caregivers can have accessing the help they need.

Wood was diagnosed when he was 56 and Raitt was 47. It was a shock. Raitt said she wanted people to think about the fact that “sometimes it’s Alzheimer’s” — meaning possible symptoms shouldn’t be dismissed just because of a person’s age.

In the early days after his diagnoses, Wood’s disease seemed to move slowly, she said, and they were able to travel and “do all of our bucket-list things.” But then it progressed and life became increasingly difficult.

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“We had a very specific set of circumstances where Bruce was becoming very combative, not just aggressive, but aggressive that was threatening to our lives in the house. When you are in it, you can’t negotiate because you are drowning and just trying to keep your head up.”

Raitt said she thought it was important that people hear the realities of the disease “because I am not the only one who is going through this or went through this. I believe there’s an obligation for me to at least give some kind of colour to the reality so that others can recognize it.”

Wood is now in a long-term care home, something Raitt says she fought “with every fibre.” She acknowledges he is receiving better care than he could receive at home and that she probably waited too long to do so.

“I think what could have helped me is somebody saying they are better off in a long-term care facility because he gets better care than I could have provided.”

Raitt said she also hoped members of the medical community heard her story to start to think about the possibility of young onset Alzheimer’s when a patient had symptoms that might include increasing problems with planning, problem solving, attention and emotions.

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Wife, mother, lawyer and former MP and cabinet minister Lisa Raitt will be keynote speaker at the Enhancing Access to Care conference on Saturday. Photo by Ottawa Brain and Mind Research Institute /Handout

She also noted that the vast majority of caregivers, like her, are women. Raitt, a lawyer, belonged to a support group of caregivers in similar circumstances and says almost all of them decided to retire early because of the pressures of caring on top of their work.

“I didn’t have the choice to retire. I’ve got two kids in university and a husband with special needs. That takes extra cash — and I continue to work for my own sanity, too” she said. “But the reality is caregivers are the ones taking a load off society and society couldn’t function without us. I’m not saying it’s society’s problem, but there should be recognition of the load that caregivers are taking.”

The conference, which will be held Saturday at the RA Centre, is aimed at people with neurological conditions and their care partners. In addition to presentations, organizations will be on-site to offer information about other services available in the community, including from traditionally marginalized group “who might not know there are services specific to their needs,” said Dr. Lisa Walker, a clinical neuropsychologist who is co-lead of the uOttawa Brain and Mind Research Institute’s neurodegeneration pillar.

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It is the first event of its kind for the University of Ottawa Brain and Mind Research Institute. Typically, events are geared toward research, Walker said.

It is difficult living with neurodegenerative conditions, she said, and can be a daunting task to access care. Sometimes, it is available, but people don’t know how to find it.

She said the shortage of family doctors was an added burden for people to understand the supports available in the community. “There are many excellent services that people can access, but they don’t know they exist and can’t access them.”

Among them are services through the regional geriatric program and the Dementia Society of Ottawa and Renfrew County. One of the speakers will talk about Ontario 211, a help line to help people access social services, programs and community supports.

Walker said the conference would also address the burden on informal caregivers, as family members and friends who care for loved ones are called.

“It is a huge burden of care, both from a practical standpoint and an emotional standpoint.”

The conference runs from 9 a.m. to 5 p.m. on Saturday. The conference, including lunch, is free and the venue is accessible. More information is available online: https://www.uottawa.ca/research-innovation/brain/events/enhancing-access-care

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Canada to donate up to 200,000 vaccine doses to combat mpox outbreaks in Africa

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The Canadian government says it will donate up to 200,000 vaccine doses to fight the mpox outbreak in Congo and other African countries.

It says the donated doses of Imvamune will come from Canada’s existing supply and will not affect the country’s preparedness for mpox cases in this country.

Minister of Health Mark Holland says the donation “will help to protect those in the most affected regions of Africa and will help prevent further spread of the virus.”

Dr. Madhukar Pai, Canada research chair in epidemiology and global health, says although the donation is welcome, it is a very small portion of the estimated 10 million vaccine doses needed to control the outbreak.

Vaccine donations from wealthier countries have only recently started arriving in Africa, almost a month after the World Health Organization declared the mpox outbreak a public health emergency of international concern.

A few days after the declaration in August, Global Affairs Canada announced a contribution of $1 million for mpox surveillance, diagnostic tools, research and community awareness in Africa.

On Thursday, the Africa Centres for Disease Control and Prevention said mpox is still on the rise and that testing rates are “insufficient” across the continent.

Jason Kindrachuk, Canada research chair in emerging viruses at the University of Manitoba, said donating vaccines, in addition to supporting surveillance and diagnostic tests, is “massively important.”

But Kindrachuk, who has worked on the ground in Congo during the epidemic, also said that the international response to the mpox outbreak is “better late than never (but) better never late.”

“It would have been fantastic for us globally to not be in this position by having provided doses a much, much longer time prior than when we are,” he said, noting that the outbreak of clade I mpox in Congo started in early 2023.

Clade II mpox, endemic in regions of West Africa, came to the world’s attention even earlier — in 2022 — as that strain of virus spread to other countries, including Canada.

Two doses are recommended for mpox vaccination, so the donation may only benefit 100,000 people, Pai said.

Pai questioned whether Canada is contributing enough, as the federal government hasn’t said what percentage of its mpox vaccine stockpile it is donating.

“Small donations are simply not going to help end this crisis. We need to show greater solidarity and support,” he said in an email.

“That is the biggest lesson from the COVID-19 pandemic — our collective safety is tied with that of other nations.”

This report by The Canadian Press was first published Sept. 13, 2024.

Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.

The Canadian Press. All rights reserved.

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How many Nova Scotians are on the doctor wait-list? Number hit 160,000 in June

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HALIFAX – The Nova Scotia government says it could be months before it reveals how many people are on the wait-list for a family doctor.

The head of the province’s health authority told reporters Wednesday that the government won’t release updated data until the 160,000 people who were on the wait-list in June are contacted to verify whether they still need primary care.

Karen Oldfield said Nova Scotia Health is working on validating the primary care wait-list data before posting new numbers, and that work may take a matter of months. The most recent public wait-list figures are from June 1, when 160,234 people, or about 16 per cent of the population, were on it.

“It’s going to take time to make 160,000 calls,” Oldfield said. “We are not talking weeks, we are talking months.”

The interim CEO and president of Nova Scotia Health said people on the list are being asked where they live, whether they still need a family doctor, and to give an update on their health.

A spokesperson with the province’s Health Department says the government and its health authority are “working hard” to turn the wait-list registry into a useful tool, adding that the data will be shared once it is validated.

Nova Scotia’s NDP are calling on Premier Tim Houston to immediately release statistics on how many people are looking for a family doctor. On Tuesday, the NDP introduced a bill that would require the health minister to make the number public every month.

“It is unacceptable for the list to be more than three months out of date,” NDP Leader Claudia Chender said Tuesday.

Chender said releasing this data regularly is vital so Nova Scotians can track the government’s progress on its main 2021 campaign promise: fixing health care.

The number of people in need of a family doctor has more than doubled between the 2021 summer election campaign and June 2024. Since September 2021 about 300 doctors have been added to the provincial health system, the Health Department said.

“We’ll know if Tim Houston is keeping his 2021 election promise to fix health care when Nova Scotians are attached to primary care,” Chender said.

This report by The Canadian Press was first published Sept. 11, 2024.

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Newfoundland and Labrador monitoring rise in whooping cough cases: medical officer

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ST. JOHN’S, N.L. – Newfoundland and Labrador‘s chief medical officer is monitoring the rise of whooping cough infections across the province as cases of the highly contagious disease continue to grow across Canada.

Dr. Janice Fitzgerald says that so far this year, the province has recorded 230 confirmed cases of the vaccine-preventable respiratory tract infection, also known as pertussis.

Late last month, Quebec reported more than 11,000 cases during the same time period, while Ontario counted 470 cases, well above the five-year average of 98. In Quebec, the majority of patients are between the ages of 10 and 14.

Meanwhile, New Brunswick has declared a whooping cough outbreak across the province. A total of 141 cases were reported by last month, exceeding the five-year average of 34.

The disease can lead to severe complications among vulnerable populations including infants, who are at the highest risk of suffering from complications like pneumonia and seizures. Symptoms may start with a runny nose, mild fever and cough, then progress to severe coughing accompanied by a distinctive “whooping” sound during inhalation.

“The public, especially pregnant people and those in close contact with infants, are encouraged to be aware of symptoms related to pertussis and to ensure vaccinations are up to date,” Newfoundland and Labrador’s Health Department said in a statement.

Whooping cough can be treated with antibiotics, but vaccination is the most effective way to control the spread of the disease. As a result, the province has expanded immunization efforts this school year. While booster doses are already offered in Grade 9, the vaccine is now being offered to Grade 8 students as well.

Public health officials say whooping cough is a cyclical disease that increases every two to five or six years.

Meanwhile, New Brunswick’s acting chief medical officer of health expects the current case count to get worse before tapering off.

A rise in whooping cough cases has also been reported in the United States and elsewhere. The Pan American Health Organization issued an alert in July encouraging countries to ramp up their surveillance and vaccination coverage.

This report by The Canadian Press was first published Sept. 10, 2024.

The Canadian Press. All rights reserved.

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