A news report by Spectrum News 1 in Ohio shows that roaming in FTD has an underlying reason and that care partners can take steps to make this behavior safer for persons diagnosed.

In the report reporter Kimberly Perez speaks to Carol Jeran of Cleveland, the care partner for her husband, Jim, who was diagnosed with FTD. Jim previously worked in electronics and began to tinker with electronic devices around the house as his symptoms developed. Jim also began to roam, Jeran told Perez.

Roaming in FTD is different from wandering behavior in Alzheimer’s disease. In Alzheimer’s, wandering is often triggered by disorientation or forgetting something (entering a room without remember why they did so, for example). Roaming in FTD, however, can be a compulsive behavior (which are common in FTD), a reaction to a specific stimulus (such as a stressful environment), or, as the report highlights, because a person diagnosed has an unmet need. Because FTD can affect communication, it can be difficult for someone with the disease to tell their loved ones what is wrong, which can lead to seemingly unprompted roaming that can take care partners by surprise.

Getting ahead of roaming behaviors when they start can be helpful, the report says. Many long-term care and day facilities factor roaming behaviors in care plans and sometimes even their architecture. For example, the King David Adult Day Center that Jim visits is centered around a large circular hallway.

“It’s designed purposefully to promote walking because so many people with dementia do [roam], as it’s called, or walkabout,” said Tina Witt, a director at the center. “This provides space for them to do that. It’s a big circle.”

At home, Jeran installed locks at the tops of doors to create safer pathways for Jim to roam. She also placed an Apple AirTag in his shoes in case he wanders from home. Witt noted that extra door locks should only be used when others are at home, in case of a fire or another emergency.

Anticipating the needs of a person diagnosed can also help with roaming, Witt adds.

“Often, we assume it’s their dementia, and they’re just walking about with no purpose,” Witt says. “More often than not, it’s because they have a need that’s not being met. Are they thirsty, hungry, cold, hot? It might be that there’s pain. So, asking someone, ‘Can I get you something? Are you thirsty?’ You might go through a [series] of questions until you find the right thing.”

Jeran says being proactive with Jim has helped them considerably as they navigate FTD.

“He might just be thirsty, but he can’t tell me. When he is [roaming], I’ll give him snacks. I sit next to him and play with him. If you get his needs met, he’s good. It’s just hard to know sometimes,” Jeran said. “I’m just really honored to be able to take care of him now because he’s taken care of me my whole life. We’re on a different journey, but it’s a good journey.”

As the report emphasizes, roaming in FTD isn’t the same as wandering in Alzheimer’s disease. Learn more about roaming and how you can manage it by reading the Spring 2013 issue of Partners in FTD Care.

Do you have questions about wandering and roaming? AFTD’s HelpLine has the answers you’re looking for – you can reach the HelpLine at 1-866-507-7222 or info@theaftd.org.