by Jacky Habib in Toronto 

Joyce Chan suspected something was wrong with her husband when he started losing his way to their local Tim Hortons five years ago.

“Instead of walking south, hed walk north and get lost. I would have to go out and look for him,” Chan, 77, recalls, about her 82-year-old husband, Peter. She says he lost his way one day when they decided to go out for lunch. “We didnt know where he was, but he had walked home by himself. He fell down quite a few times.” 

Peter was diagnosed with Alzheimers disease, a type of dementia with symptoms including a decline in memory, reasoning and communication skills and a gradual loss in ability to carry out daily activities. 

Over 700,000 Canadians live with Alzheimers and other dementias. According to the Alzheimer Society of Canada, for every person with the disease, two or more family members provide care. 

The diagnosis has taken a toll on Chan, who is Peters main caregiver. He has been on a waiting list for the last year to receive long-term care. The couple immigrated to Canada 48 years ago and have one adult son whom they seldom lean on for support because of his busy schedule. 

“Its not easy. Back home in Hong Kong, we have lots of relatives ... I can call them [for support],” says Chan. “We have been here so long and we have friends, but everyone has their own family and their own problems.” 

Reverting to native language, reliving trauma 

Sharon Tong, the support and education coordinator at the Vancouver Chinese Resource Centre (VCRC), says many of the seniors she works with came to Canada through sponsorship and this impacts the dynamic they have with their children. 

Elderly parents often insist they can manage themselves and are not forthcoming with their children about their needs, she explains. 

[quote align="center" color="#999999"]“They dont want to put an extra burden on their children, but they dont have a social network."[/quote]

“They dont want to put an extra burden on their children, but they dont have a social network, because a lot of their social networks are still in their hometown,” she says. 

The VCRC is an initiative of the Alzheimer Society of B.C. that began 20 years ago. The centre provides educational workshops in Cantonese and Mandarin as well as personal support and support groups for people with dementia and caregivers.  

It has filled a gap for people who struggle to find services in their native language.  

Ekta Hattangady, a social worker at the Alzheimer Society of Toronto, says losing the ability to speak English is a unique challenge for immigrants with dementia. 

“A lot of people revert to their first language,” Hattangady says. “The services that are available to them last year are no longer suitable to them because they no longer speak English.” 

The Alzheimer Society offers information in various languages as well as counselling with an interpreter. The most commonly requested languages are Italian, Portuguese, Greek, Arabic and Cantonese. 

Another challenge with declining memory is that people recall old memories, which can be especially difficult if they have suffered trauma. 

To deal with this trauma, Hattangady sometimes recommends attending programs or listening to familiar music, which has proven to decrease isolation and boost the cognitive processes of patients. 

[quote align="center" color="#999999"]“A lot of people revert to their first language.”[/quote]

Accessing culturally specific services 

For people with dementia who are in need of long-term care, dietary restrictions such as eating halal or kosher food can also be a concern. 

This is where places like the Yee Hong Centre for Geriatric Care come in. The centre was established in 1994 to serve the Chinese community. It now has four locations in the Greater Toronto Area serving several communities, including a dedicated unit for Japanese patients and another for South Asians. 

The Yee Hong Centre incorporates culture in all aspects of service delivery, from the food it serves to the staff on site, who speak the same languages as the patients. 

“When [patients] talk about home, they are talking about home in a small town in eastern China or a village in India,” says Yee Hong's CEO Eric Hong. “They may not realize theyre in Canada. Our programs cater to that so they feel theyre in familiar grounds and dont get anxious.” Cultural music and newspapers at the centre contribute to this atmosphere, he adds. 

Hong explains that the Centre also provides health care that is conscious of peoples experiences and expectations. 

[quote align="center" color="#999999"]"Even if [immigrants] get services here, sometimes they are not tuned into what a person of colour may want.”[/quote]

“Health-care [in Canada] isnt as straightforward as people expect it to be. Even if [immigrants] get services here, sometimes they are not tuned into what a person of colour may want.” 

This includes addressing different perspectives on what constitutes healthy behaviour, and the relationship between a health practitioner and patient, he explains. 

Caregivers face challenges also 

Isolation is another common experience of people dealing with dementia and their caregivers.

Chan shares the difficulty in caring for her husband who she says has not been the same since his dementia has progressed. She says Peter was sharp, intelligent and had a decent build, but is now skinny, weak and needs help with tasks like using the microwave. 

Although hes a quiet person who doesnt converse with her much, Chan says when he gets sick, he screams at night and its tough to handle on her own. 

“I count my blessings every day,” she shares. “I like to play Sudoku and to watch TV and to listen to music, otherwise I will be very depressed. Ive got to keep up my spirits. I have to set an example for my husband. If I dont think positive, hell be worse.” 

Editor’s Note: Joyce and Peter Chan are pseudonyms as the couple did not want to be identified. 

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Published in Health
Thursday, 04 February 2016 14:54

'Onus on Parents to Immunize Kids'

by Belen Febres-Cordero in Vancouver

New approaches to immunization may help newcomers get the information they need to ensure their children’s records are up-to-date, though barriers still exist across the country.

In June 2015, Ottawa implemented the immunization strategy Every Child, Every Year. Marie-Claude Turcotte, manager of the vaccine-preventable disease program at Ottawa Public Health (OPH), explains that it is parents’ responsibility to provide updated immunization records to OPH. “We do not receive the information directly from the doctor’s office,” she says.  

Through this strategy, parents are informed if their children’s immunization records do not meet the requirement of the Immunization of School Pupils Act (ISPA). They have a month to send the updated information to OPH. If they do not want to immunize their children for religious or medical reasons, they can provide an exception. 

“We try to make this process as easy as possible. Parents can give us the information by phone, fax, online, mail or in person,” says Turcotte. They also provide information in different languages and they have translators available.  In addition, they offer immunization clinics for individuals who do not have a family physician, where health insurance is not required. 

If parents do not provide the update on time, the child can be suspended for up to 20 school days.  

[quote align="center" color="#999999"]Improved access to clean water and vaccinations are the main reasons why longevity has increased over the last century.[/quote]

According to data OPH provided by email, between December 2015 and January 2016, OPH has issued suspensions to approximately 3,100 students. As of January 21, parents and guardians of 99% of students who were suspended between the same period have updated their immunization records, and these students have returned to school.

“It is crucial to have the system up-to-date because if there is an outbreak of a disease, we can see which children could be at risk and we can intervene on time,” says Turcotte. 

National and provincial policies

Most Canadian provinces do not meet national immunization targets for key diseases. Different efforts aiming to achieve these targets have been implemented across the country, but the approaches vary from province to province. 

While in Ontario immunizations are usually given at doctors’ offices and data is not officially recorded until a child enters school, provinces like Alberta and Newfoundland and Labrador have a nurse-led model focusing on early interventions that start at birth, says Colin Busby, senior policy analyst at the C.D. Howe Institute.  

Sofía Vargas emigrated from Chile and had her baby in Vancouver. She notes that in British Columbia interventions also start promptly. “There is a preoccupation to motivate parents to immunize their children,” she says. “As soon as the baby is born, the doctor explains why you should do it.” 

[quote align="center" color="#999999"]“Immunizations are safe and effective ways to prevent diseases. There is no effective treatment for many of them once they are contracted, so prevention is our only strategy.”[/quote]

Busby clarifies that each province has its unique features, and a policy that works in one is not necessarily effective in another. However, he believes that compelling parents to make a vaccination decision is an initial step to be considered nationally.  

Challenges unique to newcomers

Improved access to clean water and vaccinations are the main reasons why longevity has increased over the last century, Busby explains. However, finding accurate and timely information about immunization can be difficult for newcomers. 

“In a study conducted among immigrant women in Edmonton, we found that the reason why their children are not being immunized is that mothers are not being told where, when or how to receive vaccinations,” says Stephanie Kowal, knowledge translation coordinator in the School of Public Health at the University of Alberta.  

Dr. Ubaka Ogbogu, assistant professor in University of Alberta’s faculties of law and pharmacy and pharmaceutical sciences, identifies language barriers and challenges accessing health care as other difficulties newcomers may face.

[quote align="center" color="#999999"]Parents can access information about immunization in Canada at national and provincial websites.[/quote]

Moreover, vaccines used in Canada are not always part of immunization programs globally, and immigrant families may have lived in circumstances where health care is limited or unreliable, explains Dr. Noni MacDonald, professor of pediatrics at Dalhousie University in Nova Scotia. 

She highlights the need for addressing this issue. “Immunizations are safe and effective ways to prevent diseases. There is no effective treatment for many of them once they are contracted, so prevention is our only strategy.”

Ways to get informed

Parents can access information about immunization in Canada at national and provincial websites. They can also download an app created by Immunize Canada

However, Kowal believes that comprehensive information, communication and delivery services tailored to immigrants’ needs are lacking. 

Although there are some resources provided in languages other than English and French, Dr. Ogbogu says that most of the information available is not translated. 

Another challenge is that most information is online, leaving families without internet access behind, explains Kowal. She suggests seeking information through local libraries or family doctors; not being afraid of asking questions; and looking for translation services, available at some clinics and hospitals at no cost.  

Vargas adds that there are provincial phone numbers people can call to ask for medical information. She encourages parents to look for resources and get involved. “Vaccines are a remarkable milestone in public health,” she says. “It is our duty as parents to be responsible in this scientific development that translates into the safety and health of our children.” 

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Published in Health

by Kyle Duggan in Ottawa

The new minister of health can expect a flood of petitions on her desk on the topic of implementing a rare disease strategy for Canada.

Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders, told a crowd of health experts and industry stakeholders at an event put on by the Economic Club of Canada in Ottawa Monday that if they’re not writing letters to the new health minister and prime minister, they’re not doing their jobs.

“This strategy is long overdue,” she said. “We are way behind other countries.”

Her organization has been championing its plan for a national strategy since May, but sees an opportunity in the new federal government.

“I see it as low hanging fruit … a quick win for the party and the government if they were to bring this forward and implement it.”

Tougher for people with rare diseases

The strategy calls for improving early detection of rare diseases, improving quality of care for patients and introducing a policy framework for “orphan” drugs — those developed specifically for rare diseases. It also suggests measures aimed at creating a better information network for rare diseases, including a possible registry.

Monday’s event heard from Jonathan Pitre of Russell, Ontario, often called the “butterfly boy.” Pitre has an incurable skin condition called Epidermolysis bullosa (EB). He’s one of about 5,000 people with some form of EB in Canada, which causes his skin to blister and burn.

[quote align="center" color="#999999"]“For most common conditions or diseases it’s a little bit easier, there’s more knowing about them … resources dedicated to them.”[/quote]

He told the crowd about the prolonged frustration of waiting for doctors to properly diagnose his condition, about the lack of appropriate adult care centres for those with rare diseases and the prohibitive cost of his medication.

“For most common conditions or diseases it’s a little bit easier, there’s more knowing about them … resources dedicated to them,” he said. “For rare diseases … it’s a bit tougher for us.”

There’s no treatment for EB in Canada – a bone-marrow transplant would cost $2.5 million, on top of the cost of travelling to and staying in the U.S. for an extended period of time.

“I think you guys noticed that’s not pocket change,” he said. “That’s unreal.”

“That’s the truth of it. Just to get that treatment that may help us … I may not live to 20. Just to be able to keep fighting we need that much money and that much resources … We can do definitely better.”

Lack of coherent, rational approach

Former Alberta health minister Fred Horne said a Canadian rare disease strategy could help deal with cases like Pitre’s in the future, and pointed to a rare drug framework as something the new government could move on quickly.

[quote align="center" color="#999999"]“Instead of worrying about whose jurisdiction it is, let’s look at what are the opportunities to really work together and make something happen.”[/quote]

“Rare disease coverage for patients, where it exists, it’s very sporadic across the country. Some provinces have a specialized program off to the side where they can provide some assistance, but there’s no really coherent, rational approach to this. It’s a public health issue, it affects three million Canadians – that’s the call to action.”

He said a catastrophic drug coverage plan for rare diseases is critical, adding that from his experience it’s “pretty hard in a smaller budget to provide reimbursement for these drugs” because some cost hundreds of thousands of dollars a year.

Setting national standards and pooling financial resources, he said, “could do better for Canadians than we’re currently doing.

“Instead of worrying about whose jurisdiction it is, let’s look at what are the opportunities to really work together and make something happen.”

Wong-Rieger also spoke about the need to get more Canadians with rare diseases into clinical trials.

“That’s your lifeline, that’s your hope,” she said. Missing out on clinical trials can be a “major, major tragedy,” she said.

Her organization estimates that about three million Canadians – about eight per cent of the population – has a rare disease.

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Published in Health
Monday, 21 September 2015 14:43

Debunking the Racialization of Disease

by Lucy Oneka in Toronto 

There is an ever present bias in the historical theories of racialized people being more susceptible to disease, and these theories have been perpetuated by modern day media, say some Canadian researchers. 

Goldameir Oneka, University of Toronto PhD candidate and author of Extra, Extra, read all about it!: Toronto print news media coverage of type 2 diabetes, says the idea of race being linked to disease has long standing historical roots in biomedical research and practice.  

“If you look at the bio-medical literature – historical bio-medical literature – racialized peoples’ were constantly presented as individuals who were inherently diseased,” explains Oneka (full disclosure: she is the sister of this article’s author). 

“So we see theories that mainly linked the presence of diseases in racialized peoples to their so-called race. If they were sick it was because there was something in their DNA that made them sick. While there are some diseases that are linked to race/ethnicity there are many more that are not, and here is where the problem lies.” 

It is this school of thought that has fuelled the idea that non-White people are more susceptible to disease than White people. 

[quote align="center" color="#999999"]“There was very little connection to economic circumstances or changes that happen when people immigrate to a new country.”[/quote]

Dr. Margery Fee, professor of English at University of British Columbia and author of the “Racializing Narratives: Obesity, Diabetes and the ‘Aboriginal’ Thrifty Genotype” in the journal Social Science and Medicine, indicates that until recently it was generally accepted that race was useful in predicting disease – without examining intersection of ethnicity, race and socio-economic status. 

“There was very little connection to economic circumstances or changes that happen when people immigrate to a new country,” Fee says. “There was very little understanding of those social factors which is hardly surprising because scientists are educated in a very narrow way – with very little in the way of humanities education.” 

Rooted in idea of racial hierarchy 

The racialization of disease can be traced back to Darwin and social Darwinism, Fee explains, a theory that stated there was a kind of racial hierarchy with the White race being at the top, and the so-called ‘fittest’. 

As Oneka points out there are several examples of where this theory has come into play when looking at diseases within particular communities. 

[quote align="center" color="#999999"]“Racialized peoples once again are presented as being ignorant for having the disease.”[/quote]

“If you look in South Africa for example, they had this thing that Blacks who had TB (Tuberculosis) had it because their bodies were not used to civilization,” Oneka recalls. “When they got civilized, their body couldn’t handle it so that’s how they got TB. They needed to go back to the primitive ways of living and doing things.” 

Or, Oneka adds, “In the North American context, there is a lot of talk about the Aboriginal population, Aboriginal peoples have a higher rate of type 2 diabetes because they have a gene – the thrifty gene theory.” 

The role of the media 

In order to counter such ways of thinking, the existence of such schools of thought must first be acknowledged. 

Oneka looked at how what was going on with type 2 diabetes was covered by Toronto print newspapers by conducting a content analysis. She examined things like the language used. 

“Racialized peoples once again are presented as being ignorant for having the disease,” Oneka says of her findings. “They don’t know how to take care of themselves type of thing, and they are inherently diseased too,” she explains, adding articles would at times imply “their genes make them more predisposed to developing this disease compared to the White population.” 

[quote align="center" color="#999999"]“Yes, it’s true that everybody but White people has a higher risk factor for obesity and diabetes. But, it’s connected to poverty.”[/quote]

There is often a part of the story missing in news reports, Fee explains, pointing out that while the research she looked at years ago did show that White people seemed to have a better track record when it came to diabetes, this couldn’t necessarily be attributed to their race. 

“… [They] were demographically better off. As a result, they had a better diet, got more exercise and lived in better neighbourhoods,” Fee explains, adding they, for example, might be able to walk to the grocery store instead of having to drive. 

“Yes, it’s true that everybody but White people has a higher risk factor for obesity and diabetes,” Fee says. “But, it’s connected to poverty. And it is that fact which doesn’t turn up in the warnings.” 

Reporting should ‘reflect reality’ 

Oneka recommends that the media give more thought to how it reports on health. This is particularly important since generally people learn more about disease from the media than their doctor. 

When it comes to diabetes Oneka’s research shows that the media represents it mostly as a lifestyle or individual or genetic issue. 

[quote align="center" color="#999999"]Oneka insists the media should reach out to social scientists that can shed insight on how environmental factors ... play into the development of disease.[/quote]

“These kinds of reporting attributes blame, and makes the individual think it’s their fault that they are sick,” she explains. “If a person does not have a good job, they can’t afford to eat well, and the media needs to cover a more accurate account of the causes of diseases – reflect reality.” 

Part of the problem, Oneka adds, is that reporters are not specialists, and therefore rely on interviews with scientists who mainly have bio-medical backgrounds for their news coverage. 

­­Oneka insists the media should reach out to social scientists that can shed insight on how environmental factors such as the economics, poverty, racism, prejudice and ageism play into the development of disease.  

Fee agrees. “People don’t like to talk about economic disparity,” she says. “Public health is not very popular. People want to find cures for cancer in any way, but [not fix] the environment [which is] a huge systematic and ideological barrier. It’s much more fun to go after a kind of gene or a drug where you can kind of narrow the problem.”

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Published in Health

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