In over 70% of cases, frontotemporal degeneration begins younger than age 65. People are often quite physically active which, together with cognitive and behavioral symptoms, poses unique care challenges.

Early disease - Roaming by bike

Jay Gould is a 56-year-old former businessman who resides with his wife. All his life, Jay enjoyed hiking and outdoor activities. At age 48, he was diagnosed with behavioral variant FTD and unable to work; his two sons continue to manage the business. After obtaining disability, Jay spent his days riding his bike to the office, about five miles from home. As his disease progressed his visits would be repeated about 10 times each day. He rode to the office, went inside, looked in his sons’ offices at family pictures for about five minutes and bicycled home.

He never became lost or fell; however, as he became less verbal his wife, Joyce, placed a GPS tracker on his bike. She became concerned that his routinized activity coupled with changes in judgment may cause him to ignore stop signs, traffic and other “rules of the road” posing safety risks. She consulted with his doctor who started sertraline (Zoloft), which can help to control compulsive behavior. During this time, the couple went on multiple cruises. Jay spent most of the time walking throughout the ship in a consistent pattern. One day when taxiing to the shore in a tender, Jay indicated he had to use the toilet and jumped overboard. He was unharmed, but that was their last cruise.

Last summer, the couple retreated to their cabin in the mountains. Joyce hired a companion to bicycle with Jay, but a forest fire stopped that. Joyce had the bicycle “stolen” as a practical measure while at the cabin, leaving Jay on foot. The area was too steep for much walking so Jay’s roaming changed. He left the cabin and went to neighbors’ homes, going into unlocked cabins. Once there, he would go to the refrigerator, open a bottle of wine and sit in the living room. One day, he entered a home while the female neighbor was in the shower. The neighbors became irate and refused, despite Joyce’s plea, to lock their doors. One threatened to call the police and sue the Goulds. Joyce closed the cabin and returned home.

While they were away, Jay’s sons sold his bike. Whenever shopping, Jay would insist on going to look at new bikes. Joyce handled this by using a therapeutic fib, telling him their sons would help him buy his next bike. Jay then started walking in his gated community continuously from morning until after dusk. Exhausted, Joyce supported this as she did not know what else to do. He was dependent in bathing, grooming, and dressing.

Mid-disease – Pacing indoors

This past winter was cold and rainy. Fearing influenza and because Jay was now mute, Joyce confined him to their sizeable home where he paced back and forth through the house. He tried the doors to go outside, so Joyce applied safety locks to the doors and later, the windows to prevent eloping. Three months later, he had confined his walking to repeatedly walking around the kitchen island while awake. The combination of increased ADL needs, his restricted activity and her exhaustion from providing constant supervision led Joyce to place him in a secured memory care unit in an assisted living facility.

Jay did not seem to mind placement and immediately developed a route to roam. He was calm and pleasant unless his walk was interrupted. A problem arose that his route contained another resident’s room at the end of the hall, which he would enter. The staff redirected his walk past an aviary and watching the birds distracted him for several minutes whenever he passed it. The staff also covered the door knob and disguised the door with a forest scene to reduce visual cues. Periodically they would open the door to the enclosed courtyard so Jay could go outside and pace on the circular walk.

On occasion, Jay would run into other residents, not to push them, but it was as if he didn’t see them. There was no confrontation; however, several residents fell. The staff tracked what time of day he paced, increased location checks at those times and quickly learned to redirect him to areas where there were few frail residents walking—like the dining and activity rooms. Jay would not sit to eat so the staff gave him snacks and beverages continually while he walked. His family walked with him in the courtyard during visits and sat with him to encourage him to eat finger sandwiches and similar foods.

After two months, Jay lost weight due to disease progression and caloric expenditure. He became increasingly frail. His balance and gait were affected. One day, he tripped while going out to the court yard and fractured his hip. He was taken to the hospital and underwent a surgical repair. At the hospital, he was restrained to avoid weight bearing and began to yell spontaneously. He was treated for pain but continued to yell.

He was discharged back to the facility where he now receives physical therapy twice a day. He still yells, but the frequency and intensity are diminishing. The goal is to get him back walking if at all possible to minimize the spontaneous utterances. If this fails he will have a wheelchair without foot pedals, and staff will try to help him use his feet to push the chair.

What is different about Jay’s roaming versus the wandering of someone with Alzheimer’s disease?

Jay’s behavior is an example of roaming due to restlessness and stress in the environment (too much noise, people, etc.) or compulsive behavior common in FTD. Jay did not become lost. He knew where he was going and repeated the same route (home to office). His roaming was purposeful; Jay went to the office to view family pictures, entered homes and found wine to drink. He adapted his roaming behavior to new environments (biking to office, on the cruise ship, walking at the cabin and in the neighborhood, in the facility), and completed a specific, circular pattern (around the kitchen island).

In Alzheimer’s disease (AD) individuals may become disoriented. They may forget why they are walking and where they are going and then become lost (e.g., walk to the bathroom and forget why they started, or forget how to get home after going to church or the store). Another type of wandering in AD may be based on a memory of responsibility from long ago. Rather than going to the office to view family pictures, the individual may believe they are still working. Finally, they may have difficulty adapting to a new environment and wander more – looking for the “familiar.”

What purpose do you see in Jay’s biking and walking early in his disease?

Jay was still able to enjoy past activities. Biking allowed him to retain a connection to employment, his business and his sons. It provided structure to the day, and the exercise helped to manage stress and maintain physical health. These activities enabled him to remain safe at home with his wife throughout the early and into the middle stage of the disease.

What adjustments were made over time to ensure his safety and that of others?

Adjustments to the environment and behavioral interventions were needed as the disease progressed. When Jay became less verbal in the early stage, his wife placed a GPS tracker on his bike. A companion was hired to accompany him on bike rides. When biking was no longer safe, the bike was “stolen.” When Jay entered neighbor’s homes, his wife asked them to lock their doors. When they refused, Jay and Joyce returned home to a gated community. To prevent elopement, locks were installed on the doors and then windows. In the facility, visual cues were assessed and staff guided him to areas with fewer residents

What role does communication impairment in play in roaming behavior?

As Jay’s communication skills decreased, his wife implemented “safe roaming” interventions. In the early disease when his verbal skills became less, she placed a GPS tracker on his bike. In mid disease when he became mute, she had to confine him to the house, unless accompanied. After surgery, when roaming was not possible, he began yelling to communicate. Pain medication was administered and alternate activities explored to decrease yelling.