History and Diagnosis

David S., 47, had an established career as a distinguished chemist and college professor. He had earned his doctorate degree from Yale, and was well-respected as a researcher and teacher. His work had been published in many research journals, and he lectured internationally on his research findings. Married to his college sweetheart, Kristin, the couple had two daughters: Laura, 15 and Carrie, 8. He was a devout Catholic, enjoyed movies and remained close to his college friends.

David’s father was diagnosed with behavioral variant FTD (bvFTD) and died at age 65. David’s mother was his father’s primary caregiver, and he and Kristin assisted with his care when possible. David was saddened as his father, also a distinguished researcher, had retired early just as David was starting his own career. His father had displayed compulsive behaviors, such as food binging, and had spent most of the family’s savings on ill-advised investments. His father lost his ability to speak, and eventually required nursing home care.

Because David’s father’s family had a history of dementia, at 43, he chose to be tested for the genes known to cause familial FTD. The results were positive for the C9ORF72 gene. David and Kristin extensively discussed the probability of him developing FTD. He was emphatic that he needed to move to a care facility if his symptoms negatively impacted his wife and daughters as he wished for them to have happy memories of their home and of him.

David gradually began to develop symptoms over the next few years. He missed several lectures and made research errors, things that had never occurred previously. His family and friends noticed changes in his personality. At home, Carrie became annoyed when he began to change the channel regularly away from shows she was watching, and Laura was embarrassed when he made degrading remarks to friends and strangers. He was aloof at times. He binged on foods like pizza, and lost interest in activities they enjoyed as a family. He showed less interest in the girls’ activities or their emotions. Carrie was troubled by this and asked Kristin tearfully why Daddy didn’t love them anymore.

David retired two years after being diagnosed with bvFTD, at age 47. Kristin returned to work as a teacher, which left him alone during the day. Neighbors would periodically check in with him, and some of his college friends visited monthly for pizza get-togethers. Kristin researched additional FTD resources and participated in an AFTD telephone support group for people caring for a diagnosed partner who have children at home. She also read materials, such as “What About the Kids,” published by AFTD. Laura and Carrie utilized the AFTD Kids and Teens website (www.aftdkidsandteens.org), which gave them a chance to see stories and videos from other children whose parents had FTD. Kristin and her daughters attended individual and family counseling sessions. She and David had agreed to talk with their daughters honestly about his illness in ways each could understand. Kristin answered the questions they asked about his changing behaviors and provided the information they needed without elaborating. She also allowed them to decide what to say to their friends, and when.

Memory Care – Move-In

David was initially able to remain home with oversight from friends and family. Kristin would leave a written routine of activities for him to do around the house. He rarely completed them all, but she felt he was safe. Laura, the older daughter, spent more time away from home, visiting friends at their homes, and joined multiple after-school programs. Her friends rarely visited their house. Carrie was the opposite. She came directly home from school, shadowed her father to make sure, as she explained, that he was “not getting into trouble,” and refused activities that she previously enjoyed. David’s mother spent several afternoons each week at their home and provided care to him and his daughter, Carrie. She also began to make regular dates with each of the girls to do something special away from the house as David’s care and managing the household required more of Kristin’s attention.

Three events in the same month prompted Kristin and David to tour memory care communities for his on-going care. First, Kristin went to the grocery store for 15 minutes, leaving him home with the girls. She had become very careful to discard outdated food in the refrigerator as David’s food binging had increased. In this case, there was outdated food that she had not yet discarded, and he wanted to eat it. When Laura and Carrie tried to stop him, he uncharacteristically threatened them verbally, cursing and saying he would lock them in the garage. By the time Kristin arrived home, David had eaten all the food and thrown empty containers all over the kitchen; the girls were huddled in the bathroom crying.

The second event occurred the following week. David had unexpectedly entered the basement room where Laura and her friends were watching movies, during one of the rare times they visited. He had taken off his pants (underpants were still on), and was tracking feces. Laura yelled for her mother, who quickly helped to usher him back upstairs. Laura was embarrassed and upset, and her friends wanted to leave. Several parents called Kristin to tell her their children were no longer permitted to visit.

Two days later, Carrie came home from school, went to her room, and refused to come out. Kristen followed up several times before Carrie finally shared that she had forgotten a homework assignment, and was afraid she was “getting what daddy has.” She also admitted to being teased and bullied by several classmates who said her dad was “a sicko.” Kristen followed up with the school counselor who was aware of David’s illness.

The family selected a memory care community that had experience providing care to individuals with FTD. The director asked how all of them were coping, and indicated wanting to partner with them in David’s care. Carrie was very quiet and stayed close to Kristin, while Laura held David’s hand. They agreed that a gradual transitional process would be best for all.

During the first two weeks, David visited the memory care community twice for 30 minutes. Over the next two weeks, visits were increased to one hour, and then to four hours, including lunch and physical therapy. The girls did not accompany him on these visits; this gave them an opportunity to slowly adjust to his physical absence.

Prior to David’s permanent move-in, he spent a respite weekend at the community. He was still verbal, and retained the ability to reluctantly agree that his family needed a break from his care. The girls had mixed feelings about the move and what it would be like to visit with their father there. Kristen and David let them decide when and how often they would visit. This gradual process also enabled the director to further educate the staff on FTD, specifically regarding the needs of David and his family.

Memory Care – Approaches

David’s wife, Kristin, his mother, the director and memory care staff had on-going meetings to discuss his care and his family’s needs. The staff tailored their approaches to address David’s behaviors and challenges. They monitored meal times closely, due to his taking other resident’s food. Managing public incontinency was a personal care and a community issue, as furniture was ruined and cleanliness difficult to maintain. Staff had to reassure new community members and visitors who found David’s younger age, “flat” facial expression and occasional profanity frightening. The director was tasked with educating State regulatory surveyors, who continually reviewed resident’s assessments and service plans to ensure that memory care services were appropriate.

After David completed the transition to living in the memory care community, Kristin and the girls continued with counseling and support. They visited him regularly. Visits were necessarily shorter during the school year. David’s mother took a more active role in visiting him, and transporting the girls to the memory care community. Neighbors also helped with after-school transportation, and Laura often spent nights at her friend’s homes. While Carrie wanted to visit daily, Laura sometimes needed encouragement to visit. Both girls shared that it was hard to see the changes in David. He had been an affectionate father who laughed and smiled easily. Now, his personality and facial expression were described by family, friends and staff as “flat.” Kristin shared her guilt and stress with the busy schedule, and received reassurance from her mother-in-law and from staff.

Community visits consisted of family walks in the courtyard, followed by visits in David’s room. They sat on the sofa and watched movies, the same as they had done at home. Carrie drew pictures with David, and they hung them in his room. David initially helped Laura with her chemistry homework. When this became too difficult for him, Laura stopped bringing her homework. It eventually became a challenge for David’s friends and family to take him out for pizza. He enjoyed these outings, but began to take other people’s pizza, overate and would experience public incontinency. They eventually brought a pizza slice to him.

The staff provided a private area for them to eat pizza, and set aside seats in the back of the activity room when they attended Mass. Both girls liked most of the residents, but became fearful when they were occasionally mistaken for a resident’s own children or were hugged too tightly. Laura had to be persuaded to visit again after one resident, a retired teacher with Alzheimer’s disease, yelled at her for being late for school. Staff observed the visits and intervened when necessary. The director always allotted time to discuss their visits – both challenges and positives. Carrie sang in the school choir, and the activity director enlisted the choir to perform. This was one of few instances over a long stretch during which David’s family and staff observed him smiling.

Memory Care – After Care

David had a history of respiratory issues. After a year living in the community, he developed pneumonia. He was admitted to the hospital and passed away from complications of the infection. David’s family, friends and community staff shared their grief over his death. Staff members attended the funeral Mass. Many shared that David’s death, and the impact of FTD on his family, was one of the most challenging losses they had experienced.

Laura initially expressed guilt over not visiting her father more often, and Carrie withdrew. They would sometimes become upset when they forget something; fearing their family history. On the first anniversary of David’s death, Laura and Carrie sponsored a fundraiser for FTD research. They also made a scrapbook filled with the many happy times they shared as a family.

Today, David’s family continues to attend counseling and support groups. His mother visits the staff at the community and volunteers in activities. Kristin occasionally visits the staff as well, sharing memories and receiving support.

Kristin, David’s mother, and the girls have preserved happy memories of him, due to his decision for early placement, through counseling sessions, support groups and AFTD resources, and through the care and compassion of the staff for David and his family.

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

What steps did David and Kristin take that assisted with the move-in decision? B

ecause of the family history of FTD and knowing he carried the genetic mutation, David and Kristin discussed the diagnosis and care options when he could still verbalize his wishes. His experience with his own father’s illness prompted David to want their daughters to stay on track with school, friends and having a positive relationship with him as much as possible. He and Kristin had determined that when behaviors intruded too much on the family home life, placement was needed. They toured care communities and were fortunate that one in their area had experience with FTD. They were in agreement with the timing and location of placement. The couple also agreed upon the transitional placement process.

What were the challenges experienced by Kristin and the children?

While the children were aware of changes in their father, their individual relationships with him and the differences in their ages influenced what they understood. Kristin had to be careful about how she addressed their questions to be honest without overwhelming or scaring them. There were increasing incidents, such as verbal threats and food binging, which demonstrated that care at home was physically and emotionally no longer an option. Laura spent less time at home and her friends were not permitted to visit. Carrie withdrew, and feared that she was going to get “what daddy has.” Kristin needed to return to work, which left David at home alone. The visits to the memory care community were shortened during the school year. This resulted in Kristin feeling stressed and guilty. The girls were frightened of several residents’ behaviors. They had to adapt visits and activities as the disease progressed, such as not going out for pizza and him being unable to help Laura with her homework. The change in his personality from affectionate and humorous to “flat” was one of the most difficult changes.

What successful approaches did David and his family implement?

They attended counseling sessions and support groups. David’s mother assisted with the care of David and the girls. Neighbors also assisted with transportation. Resources, such as the AFTD website and other AFTD reading materials, provided information and support. On-going meetings and conversations with the director and staff were helpful. After David passed, Kristin and his mother continued to visit the memory care community. The girls held a fundraiser and made a scrapbook.

What successful approaches did the staff implement?

During the gradual transition process, the staff became familiar with David’s needs. They were further educated on FTD. During David’s stay, the staff regularly met with his family to discuss his needs and revise his plan of care. The activity director developed programs that focused on David’s interests and could include his children. The community provided a private place for him to eat with his family, and a chair at the back of the activity room for them to attend Mass. They were attentive to David and his family and the interactions with other residents. At the end of each visit, they discussed challenges, needs and positives. Kristin and the staff created a partnership of caring for him based on open communication, genuine concern and clarification on FTD. After David passed away, the staff attended his funeral, and continued on-going contact with his family.