Partners in FTD Care, Summer 2020
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Across the U.S., long-term care facilities have emerged as hotspots for the spread of the novel coronavirus, significantly disrupting their usual routines. For people living with FTD who are in such facilities, measures taken to control the virus can be profoundly confusing, isolating, and anxiety-making, particularly as the cirumstances around the pandemic change on a near-daily basis. Facility staff also must contend with significant changes to the way they provide care, and family members who can no longer visit their loved ones in person also have to deal with increased anxiety and even feelings of guilt. This issue addresses the impact of the coronavirus outbreak on families affected by FTD and facility staff, and offers strategies for maximizing care for persons diagnosed in the face of new reality caused by the pandemic.

The Case of Julius S.

Julius S., age 45, was diagnosed with FTD eight years ago. His condition manifested itself in many ways, most prominently his compulsive need to collect bottle caps and empty bottles. He walked his neighborhood for hours at a time and became agitated when interrupted. A healthy man in his 40s, he was difficult to comfort when distressed. His wife, Phyllis, realized she could not ensure his safety or provide adequate care for him at home, and sought to place him in a long-term care facility. She quickly found, however, that finding the right facility is not an easy task. Over the course of two years, Julius was dismissed from several facilities for his behaviors; Phyllis believed that the lack of understanding about FTD among staff contributed to his dismissals.

After multiple placements, Phyllis finally found a facility equipped to care for Julius. He has been settled there for the last three years, during which time Phyllis has established positive relationships with staff and worked with them to understand Julius’s symptoms, behaviors, and how to best manage his care. Although the facility is located three hours from his family’s home, Phyllis visits him frequently and, as a treat, brings him to the local convenience store once a month to choose a snack—typically a candy bar or box of cereal. Julius is comfortable with select staff members who know his likes and dislikes, and who know how to redirect him when he becomes upset.

In late February 2020, the facility began taking steps, based on clinical and governmental recommendations, to curb the spread of COVID-19. Early media reports suggested that nursing homes could emerge as virus hotspots, and Phyllis considered bringing Julius home with her to keep him safe from the disease. But she ultimately decided he would be better served remaining in the facility. She worried that taking Julius out of the facility could jeopardize the relationships she has built with his care staff, or that he would be placed on a years-long waiting list before he was allowed re-entry. Because she knew how difficult it was to find a care facility for him, Phyllis decided bringing Julius home was not worth the risk of losing his current placement. Moreover, the public health mandates and closures put in place to combat the virus created increased responsibility for Phyllis at home, as her middle school-aged son now required daily supervision and homeschooling. Becoming a full-time FTD caregiver on top of that would leave her feeling even more overwhelmed.

Facilities Take Strict Precautions

As the number of local COVID-19 cases rose nationally and locally, the facility began taking aggressive steps to control the virus. In early March, the facility went on lockdown, ceasing all in-person visitations from family members—excluding one-time family visits at end-of-life—and transitioned to digital communications. Phyllis has since scheduled weekly video calls with Julius using FaceTime, and in lieu of their monthly shopping trips, sends him a care package with his favorite snacks and letters from their children. Due to her close relationship with facility staff, she is able to call and check on Julius at any time, and trusts they will call her with updates or concerns if necessary.

The facility also implemented a series of infection-control protocols. While the measures are intended to ensure safety and prevent the spread of the virus, many residents—particularly those with FTD and other dementias—have struggled to adjust to the new normal. Due to cognitive and behavioral symptoms, Julius is inattentive to personal hygiene and becomes resistant to hand-washing, causing staff to consider alternative methods to effectively maintain hygiene. After a phone conversation with Phyllis, the facility assigned two staff members whom Julius likes to assist with a daily hygiene routine: They created cards with pictures depicting easy-to-follow steps of how to wash his hands and, in case Julius refuses, established a backup plan (specifically, the use of antibacterial hand wipes or hand sanitizer). They also scheduled regular FaceTime calls with Phyllis to help diffuse a situation in which Julius became resistant to care.

Since the outbreak, the facility has implemented a more individualized approach to care in an effort to enforce social distancing practices. Activities that were once done in large groups, such as painting and walking outside, became limited to a maximum of five residents at a time, with just one staff member. Social distancing is difficult for Julius due to his symptoms—inappropriately approaching or touching strangers is a common behavioral symptom of FTD—and he is unable to understand why these behaviors are more unacceptable now than ever due to the risk posed by COVID-19.

Changes Cause Anxiety and Depression

The rapidity and severity of the recent changes in the facility’s routines have unsettled Julius. Within a few weeks of the lockdown, the resident whom Julius usually sits next to during daily activities presented COVID symptoms and was sent to the hospital for continued treatment. His friend’s absence confused Julius; he would hover around his friend’s door in a panicked state. Additionally, the decrease in group activities particularly the cancellation of the facility’s weekly movie night—leads to increased pacing, which staff previously had addressed by allowing him to sort bottles and cans in a designated area of the facility.

Despite efforts to keep him engaged and comfortable amid the rapid changes, Julius exhibits more depressive behaviors, such as a lack of appetite and a loss of interest in activities he once enjoyed. His care team responds by modifying his medication dosages and identifying ways to re-direct his restlessness. When he begins to withdraw from the few group activities still available, staff allow Julius to help them with small tasks in which he shows interest, such as ensuring that the chairs in the common area are spaced six feet apart. To re-direct his pacing, staff escort him outside to walk daily and encourage him to help tend to the facility’s flower gardens. They take note of visual and physical cues that indicate he is anxious—most notably, he stands close to staff members, a cue that he needs to talk to Phyllis via FaceTime. Staff also refer to a list that Phyllis long ago taped to the inside of Julius’s door, which includes preferred activities when he is upset, such as playing his favorite songs on their phones.

Additionally, the need for facility staff to wear personal protective equipment, including face masks, gloves and gowns, has added to the confusion for Julius and other persons with dementia living in the facility. These protective measures also impede staff from nonverbally communicating emotions; because of social distancing, they are also unable provide reassuring touches and hugs. This loss of connection has exacerbated an already challenging environment, and proves especially difficult for Julius, who likes to have his back rubbed when upset. Staff have instead made a particular effort to use a soothing voice to help alleviate his distress and try to communicate feelings of empathy with their eyes.

Effects on Staff

As the facility contends with a rise in positive cases, staff shortages and burnout become issues. Every day, all staff must complete a screening protocol, which includes a temperature check, before entering the building. Staff whose temperature exceeds 100.4° are sent home to be monitored over the next 48 hours; if a staff member tests positive for COVID, they are directed to self-quarantine for at least two weeks. Staffing shortages are also driven by increased responsibility at home, as many staff are juggling their own families’ needs and schedules. While many staff members are asked to work overtime to cover shortages, the facility is also forced to rotate employees from other locations to cover crucial shifts—a necessary step that nevertheless heightens the risk of introducing COVID to the facility. To combat feelings of helplessness among staff, the facility partnered with an outside organization providing therapy and mindfulness sessions for care providers facing mental health challenges during the pandemic.

Despite her strong relationships with staff, Phyllis soon finds herself unable to reach the nurses who have always provided her with updates on Julius’ care. And as the pandemic worsens, staff become increasingly unable to set aside time to call her, and updates about the status of COVID cases in the facility become hard to come by. Her anxiety grows, along with feelings of guilt for wanting to contact an already overworked staff. These feelings often overcome Phyllis, leaving her to constantly worry about Julius’s care and state of mind.

With so much drastic change in such a short amount of time, Phyllis focuses on what she still can control. For example, she updates Julius’s advance directives to include information about ventilator usage in the event that he gets COVID. This small but important step partially alleviates the anxiety Phyllis feels about not being able to see her husband in person.

The absence of certain staff also adds to Julius’s distress. One night, after the male staff member who usually bathes Julius was sent home due to an elevated fever, a female staffer attempted to step in. Julius became upset and resisted a bath. Fortunately, an on-duty nurse—with whom Phyllis had shared AFTD resources in the past—was able to help calm Julius. The nurse agreed to remain “on call” in case a similar situation arises in the future, and suggested that staff unfamiliar with Julius’s case refer to the list posted on the inside of his door with his likes and dislikes, as well as the AFTD care brochures contained within a pocket folder, attached to the outside of his door.

As the pandemic continues, Phyllis begins to second-guess her decision to leave Julius in the facility. While she trusts he is receiving the best care possible, she wonders if he is feeling scared due to his inability to understand the situation. To help ease her worries, she asks staff if they can arrange a “window visit” with Julius, in which they can see each other through a window facing the outside courtyard while talking over the phone. During the visit, Julius became confused and was unable to understand why he could see his wife through the window, but could not physically be in the same room as her. He became upset, and staff had to intervene quickly and redirect him. Phyllis stopped the visits immediately and instead increased their FaceTime calls from once to twice a week.

Throughout the pandemic, Phyllis has increasingly used AFTD’s closed Facebook group for peer support: Hearing from others who understand the FTD journey helps to calm her anxiety. Overall, she feels comforted by the idea that, while there are many things that she cannot control about the current and rapidly evolving situation, she can still be in frequent contact with Julius, and she remains confident in the facility’s ability to care for him during the pandemic.

Questions for discussion:

1. What does the staff do to maintain person-centered care amid the infection-control measures implemented in the wake of the COVID-19 pandemic?
Facility staff work with Phyllis to schedule regular FaceTime calls with Julius. They attempt to compensate for the loss of physical contact with Julius by using soothing voices and empathetic eye contact. Staff who are unfamiliar with Julius and FTD are encouraged to refer to the AFTD materials posted on the outside of his door and the list his likes and dislikes posted on the inside.

2. How does staff respond to Julius’s increasing anxiety and depression over the rapidly changing situation?
Julius’s care team modifies his medication dosages and identifies ways to channel his feelings of unease. They allow Julius to help them with small tasks in which he shows interest, such as ensuring that the chairs in the common area are spaced six feet apart. To re-direct some of his behaviors, such as his pacing inside the facility, staff escort him outside to walk daily and encourage him to help tend to the facility’s flower gardens.

3. How does Phyllis deal with her own increasing anxiety?
With so much drastic change in such a short amount of time, Phyllis focuses on what she still can control. She updates Julius’s advance directives to include information about ventilator usage in the event that he gets COVID. She also reached out for peer support via AFTD’s closed Facebook group. These small but important steps partially calm the anxiety Phyllis feels about not being able to see her husband in person.

See also:

• COVID Preparedness and Facility Care
• It’s OK Not to Be OK: Dealing with Grief and Loss Amid FTD and COVID
• Employee Burnout and the Value of a Staff/Caregiver Partnership
• From a Caregiver’s Perspective: The Delicate Balance
• What to Do About Managing Facility Care During COVID-19
• Download the full issue (pdf)