Bruce Willis and his wife were left with "no hope, no direction [and] no support" when he was diagnosed with frontotemporal dementia (FTD)

She told Yahoo!: "The day we received the diagnosis, we walked out of that appointment with nothing - no hope, no direction, no support. I wasn't really given any information other than just the nuts and bolts of FTD.

"In looking back, I just think that's so crazy. It was such a traumatic experience, like your whole life is being ripped from you in a moment.

"After that appointment, I started digging into research online to really understand: What was this diagnosis? How does it impact my husband? How does it impact our family? With FTD, those early years are so hard because you're trying to figure it all out in real time and learning things on the fly. It's a progressive disease.

"So in the beginning, your person can still manage some things, and then slowly the needs start changing and the things that they used to be able to do they can't do anymore. You have to rev up the support."

The 47-year-old model - who has daughters Mabel, 13, and 11-year-old Evelyn with Bruce - is now working to develop a "really simple" resource for families dealing with dementia diagnoses and it brings her "joy" to know people in her position will feel more supported as a result.

She said: "I talked to Dr. Bruce Miller, a neurologist and director of the UCSF Dementia Center (who was not our doctor), about what had happened at our diagnosis appointment and how I would love for a doctor's office to have a piece of paper with a couple of resources on it - something really simple.

"He said he'd love to do this with me. So we're putting together these resources, and then I'm going to take this template to other institutions.

"That brings me joy to know that other caregivers will walk out of that office, and even though it's still going to be a traumatic visit, they're going to know there is support."