In FTD, “roaming” refers to a form of compulsive behavior that presents as walking, biking, or driving the same route repeatedly. While their lengths may vary, the distance of these compulsively traveled routes can be significant.

Roaming isn’t to be confused with “wandering,” a behavior more common in Alzheimer’s disease. Wandering occurs when someone with Alzheimer’s loses their ability to recognize familiar places and people, which can cause them to become disoriented. The distinction between the two behaviors is that roaming is moving aimlessly without a destination, a result of experiencing compulsory restlessness, reacting to a stressful environment, or trying to satisfy an unmet need. A person with FTD may also roam to visit their favorite places around town or to see familiar faces.

Managing Roaming

When FTD care partners notice roaming behaviors, they can try asking if their diagnosed loved one needs something specific or wants to go to a specific location. It may take some time for the person diagnosed to respond, especially if they have a form of FTD that affects communication.

Care partners should try to get ahead of roaming behaviors when possible. Because roaming can be a response to hunger, thirst, restlessness, or boredom, it can help to stick to a daily routine that includes regular meals, staying hydrated, taking medicine, and participating in favorite hobbies (Those hobbies may need to be adapted to compensate for any new limitations caused by FTD symptoms.)

If roaming is a regular occurrence, try to direct the person diagnosed to roam on specific indoor routes. Care partners can also adapt their environment to reduce risks, such as by moving furniture and other tripping hazards, decorating doors to reduce visual cues, and placing locks on doors and windows (though locks should only ever be used when someone is home). To create a more calming environment along the roaming route, turn off the TV or stereo in any rooms the route may pass, and dim the lighting slightly. In cases where someone living with FTD is particularly active and might miss meals, try to provide snacks and drinks as they roam.

If a person with FTD likes to roam outdoors, care partners can accompany them or enlist the aid of family and friends to walk with them. GPS trackers or products like Apple AirTags can be placed on their clothing or attached to a bicycle as a precautionary measure. Alternatively, the person with FTD can wear a medical alert bracelet or necklace engraved with details about their condition and emergency contact information. As the disease progresses and symptoms worsen, care partners should try to relocate the roaming route indoors or to safer outdoor spaces such as the yard or the courtyard of an apartment building.

While roaming may pose a challenge to care partners, it can let people living with FTD work off tension and stress while getting exercise. The goal is to allow them to roam safely, not to eliminate it as an activity. If a frequent roamer abruptly halts their usual routine, care partners should ask them if they are feeling OK – it could be a sign that the person diagnosed might be experiencing pain, discomfort, or illness.

Do you need more guidance on roaming? Issue 7 of AFTD’s Partners in FTD Care features a case study reviewing options for addressing roaming in FTD.