Utah couple shares journey navigating a terminal dementia diagnosis


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TAYLORSVILLE — Misplacing car keys or having trouble remembering a specific date are normal signs of aging.

But when is it "just getting older," and when could it be a more serious problem?

A dementia diagnosis

Jack and Debbie Lucas know firsthand how conditions like dementia can take a toll on an entire family.

"It's really hard for me when I can't remember something," 69-year-old Debbie Lucas said.

Jack and Debbie Lucas know firsthand how conditions like dementia can take a toll on an entire family.
Jack and Debbie Lucas know firsthand how conditions like dementia can take a toll on an entire family. (Photo: Emma Benson, KSL-TV)

Debbie Lucas, whose mother had Alzheimer's, went in for a cognitive test seven years ago and was told she had Alzheimer's. But through additional genetic testing, she was diagnosed with frontotemporal dementia, which affects less than 1 in 30 people with dementia.

"To have that ultimate diagnosis of 'it's terminal' was pretty significant," Jack Lucas said.

"Frontotemporal dementia affects patients when certain areas of their brain start decreasing," said Dr. Angel Lybbert, a geriatrician at Intermountain Health. "There's different variants. You can have a language variant where it affects your ability to find words more prominently, and you can have a behavioral variant where your personality might change."

The four main types of dementia are Alzheimer's disease, vascular dementia, Lewy body dementia and frontotemporal dementia.

Jack Lucas said they are hoping for more research to be done on frontotemporal dementia, as Debbie Lucas' genetic variant is extremely rare.

"It's just recently that we're even delving into diagnosing people on that level and having the ability to do that with genetic testing," Lybbert said.

Signs of normal aging vs. dementia

While occasional confusion or forgetfulness can be normal with aging, Lybbert said signs of dementia include significant memory lapses.

"You might see it in someone who is asking questions repetitively or having to be told about appointment times and things that you had just reviewed with them, forgetting important events, forgetting how to do things that were second nature; for example, navigating somewhere in the car to a familiar place."

The Lucas family celebrates Debbie’s birthday with roller skating.
The Lucas family celebrates Debbie’s birthday with roller skating. (Photo: Jack and Debbie Lucas)

Lybbert said you can keep your brain sharp by getting regular exercise, eating a healthy diet that includes plenty of fresh fruits and vegetables, getting adequate sleep, managing medical conditions like high blood pressure, and staying mentally and socially engaged.

"Being isolated is a risk factor for dementia, so it's important to keep those conversations going," Lybbert said. "If it's not in your personality to be super outgoing, have tons of friends, you don't need to change who you are, but you have to talk to someone at least once a day. Just make sure you're not spending days at a time alone in your home."

Jack and Debbie take walks every day and continue to participate in other activities they enjoy, like roller skating.

"It helps me a lot to go visit the grandkids, to take them for an ice cream," Debbie said.

"Your quality of life is enhanced when you're staying active, you're eating right, and being involved socially, those typical things that you would do in any cognitive or dementia situation," Jack said.

One day at a time

Some days are better than others, and Jack added that being a caregiver can be challenging.

"When your spouse starts not remembering your past … life is kind of made up of memories, and when you don't have that, it's an interesting aspect going forward," Jack said. "It's been more of an emotional roller-coaster for me."

But through it all, they're still able to laugh and live life in the present.

"It's, you know, something that we can enjoy together for the moment," Jack said.

If you have any memory-related concerns, talk to your primary care doctor. For people ages 65 and older, a mini cognitive screening is part of the Medicare Annual Wellness Visit.

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Your Life - Your HealthHealthSalt Lake CountyUtah
Emma Benson, KSL-TVEmma Benson
Emma Benson is a storyteller and broadcast media professional, passionate about sharing truthful, meaningful stories that will impact communities. She graduated with a journalism degree from BYU, and has worked as a morning news anchor with KIFI News Group in Idaho Falls. She joined the KSL-TV team in October 2023.
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