A website to help teens deal with the devastating reality of early-onset dementia in their middle-aged parent is now available in three languages – English, French and Chinese.
Dr. Tiffany Chow, a behavioural neurologist at Baycrest Health Sciences in Toronto, was inspired to create the online resource – When Dementia is in the House – after working with young children dealing with an early-onset dementia diagnosis in a parent. She saw that her patients’ children needed support for their anger, confusion and frustration at the drastic behavioural changes in their parent. She was also impressed by their openness to change and capacity to care for both their parents.
In 2011, Dr. Chow teamed up with Katherine Nichols, a Hawaii-based writer whose husband developed early-onset dementia while they were still raising a young family, to create the site. The English-language website has been accessed thousands of times since its launch.
Recognizing that early-onset dementia impacts families across borders and cultures, Dr. Chow wanted to extend the resource beyond English-speaking communities. She partnered with Dr. Howard Chertkow, a Montreal-based expert in Alzheimer’s disease and co-founder and director of the Jewish General Hospital / McGill Memory Clinic, and Dr. Andrew Law, a Hong Kong-based specialist in psychiatry, to translate the site into French and Chinese. The website can be accessed at http://lifeandminds.ca/whendementiaisinthehouse/
“One of the highest compliments I’ve ever had was a call from Dr. Howard Chertkow, who volunteered to translate the website into French and fund its launch,” said Dr. Chow. “It’s a supreme endorsement about how important he thinks the messages are and how well we are communicating those messages. To have this resource available to our under-served neighbours in Quebec, as well as all Francophone nations and territories, is a thrill.”
Dr. Chertkow’s support motivated Dr. Chow to search for help with translating the website for Chinese communities. “Altogether, the translated pages now expand our reach from English speakers – there are around 360 million who speak English as a first language – to another 1.4 billion people whose first language is French or Chinese. How cool is that!” said Dr. Chow.
The website focuses on early-onset dementia, including frontotemporal dementia (FTD). Once considered rare, FTD may now account for up to 10 to 15 percent of all dementia cases. It can strike adults as early as their 40s, in the prime of their earning years and while raising young families. FTD symptoms include inappropriate behaviours, speech issues and reduced inhibition. Such a remarkable change in a loved one, especially so early in life, is devastating for caregiving partners and children.
“La demence dans votre foyer will be an invaluable resource to families in French Canada and beyond who are dealing with a loved one suffering from frontotemporal dementia,” said Dr. Chertkow.
When considering world populations that may be experiencing dementia without adequate public educational resources, China is the largest. “When it comes to dementia care, counselling and information for family caregivers, there are drastically fewer resources available to Asian and Pacific Rim countries than in Canada,” noted Dr. Chow. “I am hoping the website’s new reach to Chinese-speaking communities in the world will be helpful in those areas where physicians have not had the luxury of sub-specialization in dementia or behavioural neurology.”
The Chinese translation of the website was a massive undertaking requiring no fewer than six translators, all of whom volunteered their time, said Dr. Chow.
Dr. Chow is currently seeking funding for a Spanish translation of When Dementia is in the House, to reach those whose mother tongue is the second most spoken language in the world (at approximately 406 million people).