The material in this section was derived from many months of qualitative research with children navigating a loved one’s early-onset frontotemporal dementia. Those interviews are documented by primary authors Tiffany Chow, M.D. and Katherine Nichols in When Dementia is in the House: A Needs Based Survey for Young Caregivers, published in the Canadian Journal of Neurological Sciences.
You’re here because someone you love, quite possibly one of your parents, suffers from an illness that differs from anything you’ve ever experienced. Other serious diseases, such as cancer, tend to affect patients physically; in that case, it can be easier for you to see and understand the changes. But when the illness resides in the brain, everything is a mystery. Knowing what’s happening — and what you can do to help — can make a painful challenge in life a little easier.
It’s important to remember that while much confusion may surround the exact naming of your loved one’s disease, the label is far less important than the actions you take to reduce your loss. There’s a lot you can do to help yourself and your family throughout this time.