11/15/2011 07:20 EST | Updated 01/15/2012 05:12 EST

Early-Onset Dementia In Parents: New Site To Help Teens Cope


TORONTO - When June Shin's husband was diagnosed with early-onset dementia in late 2006, she could find no resources to help her three young children cope with the conflicting emotions they felt or the chaos his disease brought to their household.

"It's been horrendous," Shin, a Toronto-based marketing manager, said Tuesday.

"It was an incredibly difficult time. And they all had different reactions or non-reactions as things went along. With each of their personalities they dealt with it differently, but it certainly was a really, really hard time for them all."

Families facing the same harrowing difficulties now have a tool to help them navigate this torturous terrain.

A new website for families -- with separate sections for teenagers and for healthy parents -- is designed to explain the emotional conflicts these diagnoses draw forth as well as what family members can do for the afflicted parent and for themselves.

It is called "When dementia is in the house" and is the brain child of Dr. Tiffany Chow, an expert in diagnosing and treating early-onset dementia.

Chow, who works at Toronto's Baycrest Health Sciences Centre, said she was moved to create the website after seeing children struggle to deal with the diagnosis of a parent.

Children in this circumstance become "collateral damage to dementia," Chow said. "Kids are forced to grow up really fast in these situations."

"Teens caught in this nightmare not only lose the parent struck down with dementia but also time and attention from the well parent consumed with caregiving and financial responsibilities," she said in a press release.

Chow devised the site's content with Katherine Nichols, a writer based in Hawaii who has firsthand experience in this area.

"My children were 10 and 12 when my former husband was diagnosed with frontotemporal dementia. The painful time leading up to this assessment and the traumatic years that followed inspired me to write and speak publicly about the effects of dementia on families and colleagues," said Nichols, who has written about her family's experience in several U.S. magazines.

Chow and Nichols said they hope the website will help family members learn strategies for managing the unpredictable and uncomfortable behaviours associated with an early-onset dementia in their loved one.

Nichols led focus groups with teenaged children who were living with a parent suffering from dementia to ensure the content would connect with them and reflect their interpretation of their disrupted home life.

Shin said her kids, who are now 19, 16 and 12, took part in the process. She reviewed the materials as well, and believes they would have helped her family through a hellish ordeal.

Her youngest daughter was not quite four years old when Michael Shin's behaviour started to change.

He began to act out of character, lost his job, spent masses of money. June Shin said she was left wondering what happened to the man she'd married.

"All these strange things were happening. And I guess one of their coping mechanisms was to pretend that it didn't exist outside of our house," she said of her children's reactions.

It was three years -- of car accidents and erratic and dangerous behaviour -- before he was diagnosed with frontotemporal dementia.

Shin eventually had to move her husband into a long-term care facility. He died in late April of this year.

One page in the website cautions children of an afflicted parent about the dangers of becoming compulsive caregivers, reminding them they need to be taken care of at times too.

It also warns them they should seek help if they find themselves trying to escape the stress of their reality by turning to drinking, drugs or excessive online time.

The section for the healthy parent gives advice about how to talk with children about the condition and how much caregiving children should be asked to provide.

The website is hosted and managed by the Halifax-based Canadian Dementia Knowledge Translation Network and can be found at