Partners in FTD Care, Spring 2020
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In FTD, resistant behaviors occur when the person diagnosed opposes the efforts of a caregiver to help them with activities of daily living, including bathing, toileting, dressing, eating, medication administration, and many others. Resistant behaviors may present in a subtle manner, or can be accompanied by displays of force and even violence against the caregiver. Most of the time, the resistant behaviors in FTD are not intentional, as persons diagnosed often cannot control their behaviors. In fact, because many persons with FTD also lack awareness of their own disease—a symptom known as anosognosia—they may reject their care partners’ attempts to maintain their safety; they may grow frustrated and react in ways that are upsetting. Effective nonpharmacological approaches, along with medication as needed, are key strategies to diminish escalating resistant behaviors.

The following case study demonstrates the challenges and best practices for assisting individuals with FTD who exhibit care resistance. Effective management requires close collaboration between the family and health professionals to develop and implement a highly individualized plan of care.

The Case of Kai G.

Kai G. is a 68-year-old tenured research professor at a local university. A 6’5” bear of a man, he is well mannered and even-tempered—the proverbial “gentle giant.” Three years ago, his long-term partner Jenny noticed he was changing. Usually an easy conversationalist, Kai began to have trouble coming up with the right words in the right situations. His behavior and personality changed—he became less empathetic and cooperative while becoming more disinhibited and impatient. Despite his type II diabetes and daily insulin regimen, he began eating candy several times a day. He also, unbeknownst to Jenny, was spending money frivolously and struggling to manage the household’s finances. At work, his performance began to decline, while he continued to oversee various research activities at his university’s lab.

In early summer of 2018, Kai—brushing aside Jenny’s strongly voiced objections—joined a few close friends for a week-long fishing trip. His friends became concerned with his increasingly odd behavior: He refused to eat any of the fish they caught, instead eating only junk food and sugary soda. (What his friends did not know was that Kai had forgotten his insulin. He never bothered to tell them or even attempted to rectify the situation.) Kai seemed more curt, confused and disoriented than usual; he also complained of headaches and dizziness. But when his friends asked if he was OK, Kai said he was perhaps a bit seasick, but felt fine overall.

His headaches continued when he got home, prompting Jenny to make Kai an appointment with his diabetes specialist. She insisted on accompanying him. He admitted to his specialist that not only did he forget his insulin on his trip, but that he frequently skipped doses even when he had his insulin in hand. His HbA1C levels, which measure blood sugar, were extremely high, and almost certainly accounted for his headaches and dizziness. Nevertheless, Kai could not seem to understand why taking his insulin regularly was so important.

Back at home, Jenny tried to keep Kai’s insulin regimen on track, but he resisted. The former “gentle giant” became crass, agitated, and paranoid: He said he thought Jenny was trying to hurt him. Occasionally he became aggressive and ended up physically harming Jenny, yet he seemed not to feel remorse for injuring the person he loved most. Jenny started to fall into a state of despair: disheartened by her failed attempts to care for her declining partner, embarrassed by her bruised and battered appearance. As difficult as this time was for her, she felt she could not share any of her concerns—she feared that bringing her struggles to light would paint a negative public picture of Kai, potentially harming his reputation and career.

Dementia Diagnosis

At the end of the summer, Kai’s primary care physician retired, forcing him to find a new doctor. With Kai’s permission, Jenny accompanied him to his first appointment. Kai’s medical records did not mention any of his cognitive difficulties, so Jenny discreetly slipped a note to the new doctor describing how Kai had changed over the last three years: his problems with word finding; his short-term memory issues; his penchant for misplacing common objects (glasses, keys); his impulsive behaviors, particularly around spending money; his habit of repeating himself during conversations and his trouble following along with lengthy ones; and his resistance when Jenny tried to offer help. The note was co-signed by Kai’s assistant at work as well as the financial advisor for his research department, both of whom had told Jenny about their shared concerns.

The subject of Kai’s behavioral changes came up during the appointment. Kai, however, was able to mount an eloquent self-defense, arguing that he had no impairments at all. His lucid performance made Jenny feel defeated. Fortunately, after the appointment, Kai’s physician called Jenny for a private conversation, during which she clarified her concerns and worked with the doctor to develop a plan of care.

At a follow-up visit in October, Kai took a cognitive screening test and was diagnosed with moderate dementia. He dismissed the results, insisting he was fine (although he confessed to having some trouble remembering names). Nevertheless, the doctor recommended he stop driving and insisted he let Jenny help him manage his medications. He also recommended blood work, a brain MRI, and a consultation with Dr. Fiore, a cognitive neurologist who specialized in memory and neurodegenerative disorders. Kai agreed, saying that Dr. Fiore would confirm once and for all that he did not have cognitive impairments.

Defying his physician’s clear recommendations, Kai continued to work, drive, and manage his own medications, including his insulin. Jenny became extremely troubled. Even though Kai was not yet officially a patient of Dr. Fiore—he wasn’t scheduled to meet with her until January—Jenny called her office for help. A receptionist transferred her to the practice’s dementia crisis intervention line, where she spoke with Dominique, the practice’s clinical nurse practitioner.

Jenny described how Kai was sternly and forcefully resisting any of her attempts to address his changes, and how he would frighten her by issuing what Jenny called a “firm no,” often accompanied by banging on a table with his fist, which was highly uncharacteristic for him. She tearfully blamed herself for not having intervened sooner. Dominique empathized with Jenny’s feelings and concerns, and offered a few non-pharmacological approaches she could use when Kai’s behavior was particularly challenging. (In dementia, non-pharmacological interventions are attempts to positively influence one’s cognition, mood, and other behavioral and psychological symptoms without medication.) Dominique suggested hiding Kai’s car keys or disconnecting the car battery to discourage driving. She also told Jenny that, whenever Kai displayed a resistant behavior, she should note the physical environment and social context in which the behavior took place; this could help identify specific triggers. Dominique also offered to mail Jenny resources outlining everything they had discussed, and encouraged her to call back as needed. After the conversation, Jenny felt a bit calmer knowing she had at least one source of help for dealing with Kai’s behaviors.

Visiting a Specialist

Early in the new year, Kai had his first visit with Dr. Fiore. Based on her assessment—her review of clinical notes from his primary care physician, information she received from Dominique, data from Kai’s lab work and brain MRI, and her analysis of Jenny’s observations Dr. Fiore diagnosed Kai with probable behavioral variant FTD (bvFTD). She concluded that Kai was no longer able to manage money, self-administer his insulin (his blood sugar levels were very high), or safely drive a car. She recommended that he stop driving, retire from the university, and let Jenny assist him with his finances and health care needs; she also told both to contact Dominique as needed for support.

Both Dr. Fiore and Dominique knew that Kai’s case could be especially challenging: He is highly educated, resistant to medications and did not seem to accept either his bvFTD or diabetes symptoms. Indeed, Kai did not believe Dr. Fiore’s diagnosis. Nevertheless, he continue to see her, determined to prove that he did not have any cognitive issues, let alone FTD, and that he did not need Jenny’s supervision.

The next month, Jenny and Kai had an appointment with Dominique, who immediately asked about the sling Jenny was wearing on her arm. Jenny tearfully explained that, while she was trying to administer his insulin, Kai had pushed her to the floor, dislocating her shoulder. She defended Kai, saying she knew he was reacting out of fear; he only acted aggressively when forced to do something he did not understand. The rest of the time, he was pleasant and calm, Jenny said.

Dominique knew that, without an intervention of some kind, Kai’s resistant behavior would likely only get worse. She started by educating Jenny and Kai about FTD, medications that could help, and care partnering around relationship dynamics. Together, they developed an individualized, person-centered plan of care that focused on safety and encouraged the continued use of nonpharmacological techniques, although Dominique did prescribe a low dose of quetiapine (Seroquel) for Kai. All three agreed to hold biweekly phone check-ins, and Dominique strongly encouraged Jenny to attend FTD and caregiver education and support groups. She also told her to consider hiring paid caregivers for when Kai eventually retired.

One rainy March afternoon, Kai found spare car keys that Jenny had hid and left without telling her. After realizing what had happened, Jenny tried several times to call Kai’s cell phone, but he did not pick up, nor did he return home that evening. Jenny then contacted everyone she thought might know Kai’s whereabouts, but no one had seen or spoken to him that day. She called Dominique, who recommended she call 911; eventually local authorities issued a Silver Alert, an urgent search for missing persons who are elderly and/or have cognitive or developmental impairments.

A Disturbing Incident

Finally, just after midnight, law enforcement officials found Kai in the university parking garage, calm and unharmed, unaware of the widespread hysteria his disappearance had caused. He denied any substance abuse or suicidal thoughts, and insisted he was not confused. Rather, he said he was monitoring a fraternity party across the street; he had thought it needed adult supervision, so he planned to spend the rest of the night watching it from the parking lot. In actuality, Kai had lost his car in the parking lot and spent four hours looking for it, and when he finally found it, he accidentally locked the keys inside. When a police officer shone a flashlight into Kai’s car, he could see his cell phone lying on the passenger seat, with more than 30 missed calls.

Overwhelmed by the flashing lights and the police interrogation, Kai grew confused and frustrated. He could not answer the officers’ questions coherently, or provide Jenny’s contact information; he also refused a ride home. The officers tried to coax him into their vehicle, but in doing so encroached into his personal space. Kai reacted with loud objections and by aggressively waving his arms. The police slowly backed away, giving Kai more space and greatly reducing the potential of a dangerous incident. They calmly told him they had called an ambulance to take him to the emergency room. Once Kai reached the ER, hospital personnel contacted Jenny, who explained that Kai had FTD.

University security reported the incident. His department considered the incident in light of his increasingly disruptive behavior and unsatisfactory work performance and pressed him to retire. During a farewell party the university threw for him, Kai seemed perplexed, but remained cordial.

The day after the party, Kai and Jenny visited Dr. Fiore and talked about Kai’s most recent medical and behavioral issues. Jenny told the doctor that while administering Kai’s insulin was easier than before, he still occasionally resisted. Dr. Fiore recommended an increase of his quetiapine to reduce his paranoia and resistance to care. She reinforced the use of non-pharmacological interventions and again suggested hiring in-home caregivers.

A few months after that visit, things started to get a little better for Kai and Jenny. Dominique helped Jenny hire a home health aide to help with Kai’s morning and nighttime care routines, and assist in administering his insulin. The increased dose of quetiapine helped to reduce his most challenging behavioral symptoms. Eventually, Kai began to attend an adult day program, which he enjoyed. Jenny appreciated the respite, as well as the chance to go to meetings of her local FTD support group.

While not every person living with FTD will resist care, it is nevertheless a fairly common symptom of certain types of FTD. Like Kai, many will resist care because they simply do not think anything is wrong with them, and may act out with a level of aggression that they never used to display. Resistant behavior can make the job of being a care partner significantly more difficult. But it is important to know, as the case of Kai and Jenny demonstrates, that there are options available to reduce resistance—through the use of medicine, caregiver education and non-pharmacological interventions.

Questions for discussion:

1. What are three examples of Kai’s resistant behaviors seen in the case, and how were they addressed?
Three examples of resistant behaviors seen in the case were:

• Jenny’s descriptions of Kai’s “firm no,” often followed by banging his fist on a table
• Kai refusing to accept a ride from local police, aggressively waving his arms while doing so
• Physically fighting off Jenny’s attempts to administer his insulin, hurting Jenny in the process

Some best practices for resistant behaviors used in this case are: non-pharmacological care approaches, care partner education, and the use of paid caregivers. Additionally, Kai was prescribed medicine—quetiapine, in this instance—targeting his resistant behaviors and other symptoms.

2. What challenges arose in obtaining a bvFTD diagnosis? How did Jenny communicate her concerns to clinicians?
A care partner’s own observations, carefully documented, are often the most important part of the diagnosing process. Care partners should record any changes in behaviors and personality that they see. Jenny was able to slip a note to Kai’s primary care physician explaining the changes she had seen in him. When Kai was lucid and eloquent during the appointment, she was anxious that her concerns would be ignored. But the doctor recognized that Jenny’s list of concerns, combined with the cognitive assessment performed on Kai, warranted a follow-up visit with a dementia specialist who had experience in FTD.

3. How did the dementia nurse practitioner address Kai’s resistant behaviors while improving his and Jenny’s quality of life?
The dementia nurse practitioner introduced Jenny to nonpharmacological care approaches to address Kai’s resistant behaviors. She also made herself available by phone, offering support and suggesting ways to best minimize Kai’s distress while working to maintain his health and quality of life. Based on those suggestions, Jenny started attending caregiver education classes and a local FTD support group; she also hired a home care worker and enrolled Kai into an adult day program.

See also:

• Combatting COVID-19 When FTD Causes Hand-Washing Resistance
• Optimizing Medications for Difficult Behaviors in FTD
• The Importance of Recording Resistant Behaviors ‎
• Strategies to Maintain Safety When Resistant Behaviors Arise
• A Care Partner’s Perspective
• Additional In-Home and Community-Based Care Options
• What to Do About Managing Resistant Behaviors
• Download the full issue (pdf)