Partners in FTD Care, Summer 2021
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While dementia is popularly seen as a condition exclusively impacting the elderly, people in their 50s, 40s, 30s and even younger can be diagnosed. The most common dementia affecting people under the age of 60 is frontotemporal degeneration (FTD), which can cause drastic behavioral and personality changes that can negatively disrupt one’s family life, employment situation, and sense of self. Securing an accurate FTD diagnosis for someone under 60 can also be a struggle, as healthcare professionals may not think of dementia at such a young age. The case of José G., who is not yet 50 years old, highlights many of the challenges that behavioral variant FTD can impose on a relatively young family.

The Case of José G.

For years, José G. was a popular figure in his rural Nevada hometown. Elected to several terms as county medical examiner, José seemed to be on a first-name basis with everyone he met in public. He and his wife, Marlena, both in their late 40s, have three children—two sons away at college, and a daughter in high school. Between José’s elected position, his job as a hospice nurse, and his wife’s real estate job, the couple earned a comfortable living. They enjoyed eating at nice restaurants and spending time with friends, waterskiing at a nearby lake. José volunteered at church and kept in excellent physical condition, running half-marathons several times a year.

Three years ago, José and Marlena went on a cruise to celebrate their 25th wedding anniversary. They seemed to be the youngest people on board by two decades, but they were determined to have fun. So while Marlena thought it odd that José, who typically does not like drawing attention to himself, entered a dance contest, she didn’t think too much of it—that is, until José started to disrobe during his routine, eventually stripping to his underwear. The performance was a hit—José even won a trophy—but Marlena was disturbed by how uncharacteristically he had behaved. Her husband was a gregarious person, but hardly an exhibitionist. A woman Marlena met on the cruise made a joke about “liquid courage,” but José was a teetotaler and had not drunk a drop of alcohol all night.

The strange behavior continued after the trip. While driving, José would drift into the left lane. Marlena, sitting in the passenger seat, would cry out in fear, but José seemed not to care. He started forgetting words for everyday items—the coffee pot, the toilet plunger—and, while speaking, would frequently trail off mid- sentence. At one point, the couple went out to eat at a restaurant with friends, and José, seemingly upset that the server did not clear the table to his liking, snapped, “Hey, are you too good to pick up our damn dishes?” The rest of the party was mortified.

Marlena grew suspicious. Was José acting out due to some sort of mid-life crisis? Or could this be young-onset dementia? José’s first cousin was diagnosed with Alzheimer’s in her early 50s, and while her symptoms were significantly different, Marlena couldn’t shake the feeling that her husband’s brain was changing. José, however, denied that he was acting differently, and seemed uninterested in his wife’s concerns. Marlena began taking notes on all of José’s new behaviors. She gently suggested that he see a doctor about these changes, but José remained adamant that he was fine. This lack of self-awareness of his behavior was especially troubling to Marlena. [This lack of awareness, known as anosognosia, is a common symptom in FTD. For more information, see the Winter 2019 issue of Partners in FTD Care.]

Eventually, José went for his previously scheduled yearly check-up with his primary care physician, a good friend of the family. Marlena was able to convince José that she should tag along. She had been worried José’s doctor would simply dismiss her dementia theory—after all, José was a physically fit and accomplished man in his prime. Adding to Marlena’s anxiety, during the visit her husband came across more as the “old José”—the glad-handing county medical examiner—and less as a person who snaps at waitresses and strips in public. Thankfully, Marlena had documented his changes thoroughly, and emailed the doctor her notes and explained her concerns before the appointment. Additionally, during the visit she sat behind José and gave nonverbal cues to the doctor whenever José said something misleading or incorrect.

Between Marlena’s notes and his own observations, the physician became concerned, and recommended that José see a neurologist. Eager to disprove his wife’s theory, José agreed to go. The neurologist, however, made a diagnosis of behavioral variant FTD (bvFTD) with short-term memory loss. A follow-up appointment with an FTD specialist at a well-regarded academic medical center several states away confirmed the diagnosis. José was stunned, but accepted the doctors’ expert opinions. At their advice, José immediately resigned from both of his jobs. Shockingly, he found himself retired before the age of 50.

José and Marlena decided that she would continue to work while he stayed home. Neither felt that José needed at-home care—he was more than capable of taking care of his basic needs, and now that he knew his behaviors were the result of a brain disease, both he and Marlena felt a small sense of relief.

The relief did not last long. José, left alone all day, began compulsively eating whatever he could get his hands on, the unhealthier the better. Within a few months, he had gained nearly 30 pounds. He no longer felt young and active—his FTD had made him feel sluggish. He couldn’t even go for a drive: Following a close call when behind the wheel, an increasingly concerned José agreed to cede his car keys to his wife.

Money problems surfaced next. José lived in Nevada, and several small casinos were in walking distance from his house. Alone all day, José found himself lured into the casinos several times a week. Over the course of several months he had secretly gambled away the majority of his and Marlena’s life savings. Worst of all, while José was often recognized by friends at the casinos, no one pegged him as a reckless gambler or tried to stop him—after all, he was young and ostensibly in his prime earning years, and relatively few people knew he was living with bvFTD.

Marlena was infuriated when she learned that José had gambled away their savings. Worse, he did not seem to care that he had done so, nor did he care about how he dressed or what he said to people; he began getting into confrontations with strangers in public. Even more frustrating, José seemed, to a certain extent, to recognize that he was acting impulsively, and that his impulsivity got him into trouble—yet his FTD prevented him from summoning the discipline that had so recently afforded such a comfortable lifestyle for him and his family.

Because he is aware of his condition, José felt acutely what he perceives to be the loss of his personhood. One day he overheard a phone conversation in which his wife referred to their home as “my house” instead of “our house.” The comment made him realize that he is actively grieving his former life. José was not yet 50 years old; he felt he should still be earning a living, helping to provide for his family, and maintaining the responsibilities of his old life. Instead, his credit and debit cards have been taken from him and he depends on his wife to make nearly every substantive decision on his behalf.

However, after having numerous heart-to-heart talks, brainstorming, and consulting AFTD’s website, José and Marlena were able to come up with ways for José to find some purpose. She found a local psychologist who worked with José to help him process his feelings of loss. Through their local church, she found fellow members who volunteered to come and walk with José every day. And through AFTD, the entire family found options for both online and in-person support groups. Marlena and the couple’s daughter began attending a support group for family caregivers, while José got involved in an online group with others who shared his diagnosis and many of his symptoms, helping him realize he was not alone in his journey.

See also:

• FTD Overview
• Creating Well-Being with Person-Centered FTD Care
• Mental Health Matters: Finding the Right Emotional Support
• Reducing Financial Risk in FTD
• Disinhibition in FTD
• What to Do About… FTD, the Most Common Dementia Under 60
• Download the full issue (pdf)