A new website has been launched to help teens and their healthy parent cope with unresolved tragedy after early-onset dementia strikes the other parent.
Dr. Tiffany Chow is the driving force behind When Dementia is in the House. An expert in diagnosing and treating early-onset dementias in the Sam and Ida Ross Memory Clinic at Baycrest in Toronto, she has built expertise counseling families after they are shocked by this harrowing diagnosis.
Dr. Chow saw that children of patients had no resources dedicated to their education and support, and was inspired to fill that gap by creating a website that addresses teen caregivers’ feelings of anger and frustration, and their need for empowerment to effectively and confidently deal with their new reality inside the home and outside with friends.
“I’ve been working in research for frontotemporal dementia since 1997, but I think my greatest direct contribution to families will have been the creation of this website to support the children who become collateral damage to dementia. I am always inspired in my talks with child caregivers who have shown tremendous courage and open hearts. They feel they can’t do enough for their parents, and I have felt that the medical team can’t do enough to help these kids,” said Dr. Chow.
“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. Kids are forced to grow up really fast in these situations,” added Dr. Chow, who teamed up with Hawaii-based writer Katherine Nichols to produce the content for the website. Nichols and her children have firsthand experience with the tragic diagnosis of an early-onset dementia.
“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 published a poignant article in the New York Times Magazine and also wrote about her experience for the San Francisco Chronicle Magazine. “My good fortune has included learning from and collaborating with Dr. Tiffany Chow since 2006. I am particularly honored to participate in the creation of this website which I hope will help families and adolescents feel less isolated in their loss.”
During the project’s research phase, Nichols led focus groups with teenaged children who were living with a parent suffering from dementia to ensure the content would connect with them, their psychosocial needs, and their interpretation of a disrupted life at home.
The new online resource is hosted and managed by the Halifax-based Canadian Dementia Knowledge Translation Network (CDKTN) and can be accessed at www.lifeandminds.ca/whendementiaisinthehouse.
Dr. Chow is a primary contributor and editor of the website’s content. When visitors arrive on the homepage, they can choose one of two portals to enter. One portal takes teen visitors to educational and caregiver materials about early-onset dementia in a parent; the other provides similar information but is tailored for the well parent who needs guidance about how to discuss dementia with younger children, and how to continue parenting when overwhelmed with full-time caregiving.
Dr. Chow and Nichols hope the website will help all family members learn strategies for managing the odd and unpredictable behaviours associated with an early-onset dementia in their loved one, and find ways to create special moments where they can still enjoy some quality time together as a family.
When Dementia is in the House is a collaboration among Dr. Chow, the CDKTN and Dalhousie University in Nova Scotia. It is supported by grants from the CDKTN (a network funded by the Canadian Institutes of Health Research / Institute of Aging) and the Ontario Ministry of Health and Long Term Care’s Alternate Funding Program.
Other partners supporting the project include the Niagara-based Young Carers Initiative, a not-for-profit organization that promotes awareness of young caregivers who must take on adult caregiver roles at an early age; the Gilbrea Centre for Studies in Aging at McMaster University, which teaches informal caregiving to children who have an ill parent, based on the Montessori method; and the National Initiative for the Care of the Elderly at the University of Toronto, which will print a hard copy of the parent information from the new website.
Dr. Chow says an application for phase two funding is underway to expand the website’s content beyond early-stage dementias that afflict middle-aged adults to more common dementias such as Alzheimer’s disease that strike in later life. The additional funding would also support the creation of an educational booklet for young children who have a grandparent living in their home with dementia, and add interactive features to the website.