The book engages children, ages five to nine, to follow clues to understanding frontotemporal degeneration (FTD), an early-onset dementia that can strike adults as early as their 50s while they are still working and raising young children. The disease doesn't affect memory at first, but attacks the brain's frontal lobes which are associated with personality traits and language control. An individual with FTD will begin to display odd and disruptive behaviours and become a different person as the condition progressively worsens -which can scare and alarm young children.
Dr. Tiffany Chow, an expert in diagnosing and treating early-onset dementias in the Ross Memory Clinic at Baycrest Health Sciences, saw the need for this educational resource after meeting with patients at family meetings to discuss treatment and planning for FTD and being surprised by how young the patients' children were.
Dr. Chow joined forces with Gail Elliot, a gerontologist and dementia specialist with DementiAbility Enterprises, Inc., and Atomic Orange Productions (a service provider of interactive toys and games), to create the activity book. The principal cartoon characters are Frank and Tess Detectives - clever names that have the acronym FTD. The book can be downloaded for free from Baycrest Health Sciences' website
"I think children, regardless of age, are distressed by illness in a parent, but with FTD there are completely foreign behaviours or personality changes," said Dr. Chow, a senior scientist and clinician.
"Children can worry that FTD is contagious and that they're going to lose both parents. They also worry they are going to get it, so we need to educate them as quickly as we can with age-appropriate information. Our activity book empowers young caregivers to find positive ways to adapt to their new situation, understand what is causing their parent's peculiar behaviour, and learn simple ways to be helpful to both parents during a very challenging time."
In the activity book, big brother Frank engages his younger sister Tess to play a detective game that will explore how FTD affects the front regions of the brain which handle talking, emotions and behaviours. There are colouring and puzzle activities, such as sequencing tasks and picture searches, which the child and parent with FTD can do together. Each activity has an underlying learning component that teaches the child in a gentle way how FTD is responsible for the changes they are seeing in the affected parent.
"It's important for children to understand there are still things they can do with their mom or dad, regardless of their parent's cognitive status," said Elliot, who is currently training Baycrest frontline care staff to incorporate Montessori methods with clients who are exhibiting challenging behaviours related to dementia. "Children just need to learn new ways of communicating with their parent who has FTD. For example, instead of asking their parent an open-ended question about what the parent would like for dinner, which may be too challenging for the parent to answer, the child could offer the parent two dinner choices."
In Canada there are 500,000 Canadians living with some form of dementia. FTD, while not as prevalent as Alzheimer's disease, represents a majority of early-onset dementia cases.
Dr. Chow says plans are underway to develop similar activity books for children who have a grandparent with Alzheimer's disease. Funding for the FTD activity book was provided by the Ontario Ministry of Health and Baycrest Alternative Funding Plan Innovation Grants.