Karen Liller was mystified.

“I’d like to go upstairs,” her family member repeatedly requested as the two sat in a second-floor bedroom.

“Look around,” Liller responded, again and again. “We’re on the second floor.” As the back-and-forth continued, Liller’s family member, who has Alzheimer’s disease, grew increasingly anxious. And Liller felt guilty for upsetting her.

It was through a conversation during a monthly virtual support group offered by the Byrd Institute, which Liller regularly attends, that she later learned about therapeutic fibbing.  

“It’s very hard to do,” says Liller, a distinguished professor in the USF Health College of Public Health. “The next time my loved one said she wanted to go upstairs, I used therapeutic fibbing and just said, ‘That’s a good idea. We’ll go up to the second floor soon.’ It resolved her anxiety.”
 

Eileen Poiley, the Byrd Institute’s director of education, leads the virtual support group. She defines therapeutic fibbing this way: “It’s giving your loved one an answer or an explanation to their question or to their request that they can understand.”

Many caregivers object to the concept of therapeutic fibbing, telling Poiley that their relationship with their loved one has been based on honesty.

“I don’t want them to feel as if they are lying,” Poiley says. “Lying means giving a false statement with the deliberate intent to deceive. Lying suggests bad intention. While therapeutic fibbing does mean you’re not giving your loved one the actual answer, you’re doing it in your loved one’s best interest. Alzheimer’s causes a lot of different cognitive losses and the loved one may not be able to understand or accept a truthful answer. That may confuse them; it could make them very upset.”

The point, Poiley emphasizes, is that caregivers need to live in their loved one’s reality.

“Validate them, don’t agitate them,” she says.
 

Liller’s family member, who is not being identified to protect her privacy, enjoyed a very successful career. Around 2016, she began showing signs of difficulty remembering events and details.

Her family’s fears were confirmed through an assessment conducted at the Byrd Institute.

While medication slowed the disease’s progression for a time, Liller says, “It just got progressively worse.  When I look at pictures from Christmas a few years ago, she looks fine. It’s hard to see changes because I’m so close to the situation. But when I compare those pictures to more recent pictures, there has definitely been a change.”

Liller communicates often with other family members and certified nurse assistants who help care for her loved one. Cameras installed in the home allow Liller to see how her loved one is interacting with caregivers.

 

“The cameras also allow family members to work together with the caregivers to come up with strategies to make this journey more helpful for everyone — especially the person suffering from the disease,” she says.

Liller devotes every Sunday to spending time with her family member. To keep her mind active, they work on puzzles together or play games.

“My biggest challenge has been the emotional journey,” Liller says. “After I get home from those visits, it hits me. This disease has robbed me of years with her. And that drives me crazy. I’m a fixer. And we can’t fix this.”

There is a broader loss as well.

“I think not only of what’s been taken from us, but also society,” Liller says. “Seven million people in this country have Alzheimer’s. Families lose a loved one and as a society, we lose their contributions.”