Gerald R. is a 56-year-old married orthopedic surgeon. He stepped down from his position as chair of his department at age 52, due to a diagnosis of behavioral variant FTD. Gerald had begun to make poor decisions regarding his departmental budget, lavishly redecorating the faculty offices and trying to seduce residents on his leather sofa. At home he was becoming increasingly hostile towards his wife, Addy, calling her “a load” and “past her prime” because she was unemployed while raising their four sons, now 33, 31, and 29 year old twins. Nothing she could do was right. He routinely threatened her with divorce, but he never pursued one.

He became aggressive at social events, proposing irrational solutions to societal problems and occasionally threatening friends with aggression when they disagreed. He had several spontaneous bowel movements during social engagements and made seductive statements to his friends’ wives, all of which ensured that he was excluded from social invitations and activities.

Gerald never seemed to notice this rejection. He had been an avid hunter and had many guns. Previously, the guns were locked in a safe, but after his retirement, he hung rifles in the living room and left handguns lying around.

Addy had to return to work. Gerald seemed content at home with his computer and pacing his Florida neighborhood. While Addy was at work, Gerald purchased a million-dollar cabin on Flathead Lake in Montana, sight unseen. Addy closed their bank accounts and opened new ones in her name. She replaced his credit cards with gift cards after cancelling all of the old accounts. Addy now assumed all responsibility for family finances. Addy thought she had locked up all of the guns in the house, but Gerald located one and threatened her during an angry outburst. She called 911. He was taken to a nearby hospital emergency room where he was kept overnight and treated for a urinary tract infection.

At age 53, Gerald began to refuse to bathe, shave or care for his teeth. He wore only camouflage pants and olive- colored T-shirts. At age 54, he began to have problems communicating, struggling to pronounce words and not understanding some of what was being said.

Seeking the Right Residential Care

At that time, Addy felt she could no longer care for Gerald without considerable help. She and her sons discussed long-term care options. Despite heated disagreement from the two eldest sons, Addy decided to move Gerald to a group home near their home, convinced it was the least restrictive environment possible. Gerald was admitted, but he was discharged within 24 hours because he made sexually aggressive gestures toward younger female staff.

Then Addy found an assisted living facility with a memory care unit. Addy tried to discuss her reasons for the move with Gerald, but he became increasingly agitated. Gerald was admitted to a private room in an area where there were several other male residents. Addy and the staff felt the men might become friends. The first few days things seemed to be going well, but on the third day Gerald found a cardboard box and started to pack his belongings. Despite staff reassurances that this was now his home, Gerald’s agitation escalated. The facility contacted their psychiatric consultant, who ordered 1 mg of lorazepam (Ativan ®) for agitation every four hours as needed. This did not help and may have made the agitation worse.

On his fourth day in memory care, Gerald grabbed a care aide’s arm and tried to drag her to the door, screaming for her to unlock it so that he could leave. When she did not, he broke a window. Addy and her sons responded to the facility call. The facility summoned an ambulance and Gerald was taken to the local ER. The hospital did not admit him as his behaviors had subsided. He was discharged back to his home with Addy, who felt she could manage him better than the facility.

For the next six months Gerald resided at home and became mute. Meanwhile, Addy needed to return to work and was also exhausted from the physical and emotional toll of providing care. Then, Gerald became aggressive, breaking Addy’s wrist while she was shaving him. Her sons took Gerald to the ER, and he was admitted to the hospital’s psychiatric unit for assessment. Addy and her youngest son applied for and were awarded guardianship.

Preparing for Long-Term Care Admission

Gerald was ready for admission to a nursing home specializing in the care of people with difficult behaviors. Prior to looking at nursing homes, Addy and her sons were counselled by the hospital’s nurses and a social worker on principles of behavioral care and FTD. All acknowledged that Gerald had a potential for aggression, and they agreed to find a facility with specially-trained staff and a consulting psychiatrist who would oversee Gerald’s care. All of them realized that such a facility might not be close to Addy’s home. The director of nursing and social worker did a pre-admission home assessment focusing on Gerald’s past, his behavioral symptoms and triggers for aggression. Addy and her sons were directed to AFTD caregiver support resources (http://bit.ly/1PDU8Xz), a local FTD support group and several on-line FTD caregiver groups for information on care techniques and the experiences of other caregivers.

Addy and the family were encouraged to visit as often as they liked; however, for the first month, they were advised to visit immediately before a meal and plan to stay just 15 minutes. They were encouraged to bring an activity to do with Gerald, such as looking at labeled family and nature photos and playing simple games, and they were encouraged to plan to leave when Gerald began the meal. Based on past behavior, the psychiatrist and Addy agreed that Gerald was to be maintained on a low dose of atypical antipsychotic medication (quetiapine, 25 mg at bedtime) for at least two weeks after admission. The psychiatrist would visit at least weekly until any RSS reaction subsided.

A room was identified in a quieter area of the facility. Addy brought in a bedspread similar to the one at home and Gerald’s pillow. His computer was installed without internet access at a desk in his room. Because of the potential for misinterpreting stimuli and developing psychotic features, there was no television in his room. The telephone was removed because even though Gerald was mute, he continued to dial home obsessively. The staff determined how closely Gerald’s usual daily routine could be followed and followed it to the highest degree possible. Realistic goals were set for personal care: bathing once a week by a male CNA using a towel-bath procedure. Addy purchased several identical sets of “camo” for him to wear. These steps encouraged positive interactions with staff.

Staff and family agreed that the first 24-48 hours after admission would be quiet, with meals served at his desk, supervised by a staff member. The director of nursing identified one of his most experienced and laid-back caregivers to spearhead care for the first two weeks. A male caregiver was identified because Gerald seemed to respect men more than women. Gerald was supervised carefully around women, both staff and residents. Close, unobtrusive monitoring by staff was implemented to monitor for elopement potential. Staff and Addy agreed to meet at the end of two weeks to mark any progress or problems.

Planning Pays Off

Gerald adapted without any major problems. Consistent staff were assigned to assist him and trained in non-confrontational approaches. If Gerald did not want to do something, no one tried to force him. The care plan noted the special nature of his needs, including facilitating his obsessions of continuous walking and shredding paper. Although Gerald did not bond or make friends with staff, he allowed them to provide most care. Gerald did not participate in group activities, but seemed content to watch other residents while walking or shredding. He ate his meals in a quiet area of the dining room with another male resident. After three weeks, Gerald exhibited no aggressive behaviors or excessive agitation. His quetiapine was reduced to 12.5 mg at bedtime and was stopped two weeks later. The consultant psychiatrist continued to see him monthly for four months and then discharged him with the understanding that Gerald could be seen again if his condition changed.

Initially, Addy visited each morning at the same time. She tried to get him to play simple games with her but he preferred to pace. She kept this routine for several weeks but then tapered her routine to visiting twice each week. She began attending an FTD support group, forming close bonds with the other caregivers. She kept a journal of Gerald’s illness and began writing a book to help others.

Questions for Discussion
(Use for staff in-service training or in resident-specific situations.)

How did the family and care team assess the capacity of a long-term care facility to effectively serve Gerald?

The nurses and social worker at the psychiatric hospital provided access to information about FTD, and they counseled Addy and her son to be honest and provide as much information about Gerald’s needs as possible in the admission process. Rather than prioritize proximity to home, they prioritized finding a facility that had an experienced psychiatrist, or geriatrician or primary care provider dedicated to the team and experienced staff. The placement team also looked for a physical environment that was both secure and offered room to walk – important factors, especially for someone with challenging behavior issues. The facility was prepared to adapt programming to fit Gerald’s particular needs.

Residential facilities may not have experience with how FTD differs from other types of dementia. They should ensure that they have the administrative and clinical resources and staff to manage FTD care in an effective manner. Staff and family education about FTD, targeted approaches to care and discussing mutual expectations are essential.

How did the family, facility, physician, and other therapy staff develop a team approach, even before Gerald moved in? What role should did he play?

Gerald was in his 50s when his family sought residential care. Addy was emotionally drained from caring for him at home. She also needed to work to maintain income and health insurance, and she faced family conflict about the need for a move. The in-patient and facility staff understood that Gerald and his family would feel upset by the move, and that individualized support would facilitate a smooth transition.

The staff engaged Gerald and his family in various ways prior to admission. Addy used AFTD’s Daily Care Snapshot form to capture information from their family to discuss with admissions staff. The assessment process included more meetings than is typical with staff, Gerald and his family. A visit by the pre-admission team to family home provided valuable information for staff. Gerald, Addy and their son’s pre-admission visits with clinical and direct care staff in the facility contributed to building the care team. They coordinated their efforts to first control the most difficult safety issue, Gerald’s potential aggression. They agreed upon a medication regimen and psychiatric visits, as well as small group and individual activities for Gerald once he moved in to the long-term residential home.

Were the interventions implemented at move-in appropriate throughout the course of Gerald’s stay?

Steps taken at move-in were planned in advance to reduce Relocation Stress Syndrome symptoms and were based on an assessment of Gerald’s and Addy’s specific needs. They included consideration of the physical environment, staff assignments, activities, family visiting and medications. Strategies were designed to ease the adjustment to the facility, improving the likelihood of successful transition for Gerald, his family and the staff. Like most residents, Gerald adjusted to the new facility over the course of two to four weeks. Steps that ensured a quiet, calm environment facilitated his transition. Addy was hesitant for him to not have a television during the transition, but with education understood that stimulation from movies or shows could potentially cause delusions or psychotic behavior and contribute to RSS symptoms. She found eliminating television temporarily to be preferable to the alternatives, such as risking a need for sedating medication and/or inpatient care should behaviors escalate. These preventive measures were reassessed by the care team when Gerald appeared to be calm and stable in the new environment. On-going, individual assessment is essential.