Through no fault of their own, people who were once motivated, purposeful and caring may develop deep apathy that affects every aspect of their personality. They show less and less interest in favorite activities, work…
Through no fault of their own, people who were once motivated, purposeful and caring may develop deep apathy that affects every aspect of their personality. They show less and less interest in favorite activities, work obligations, household tasks, punctuality, personal appearance or other people’s feelings.
Older and even middle-aged adults can become uncharacteristically blasé as a forerunner to dementia, years before clear-cut signs appear. See what experts are learning about the apathy-dementia connection, and how family members try to cope in this difficult situation.
Diane Keller was frustrated. In 2011, Diane, a retired college consultant in Alameda County, California, and her husband Kevin, who had previously worked in the computer field, were selling their house to downsize. “I couldn’t get him to do any of the tasks, like taking stuff to Goodwill, cleaning the pool or anything,” she says.
Normally, Kevin, who was 63 at the time, would have pitched right in. “He was a very busy guy and kind of a Mr. Fix It guy,” she says. “He basically would clean the garage with a toothbrush.” Her husband had planted 150 vines in the backyard, which he carefully tended so the couple could make wine. But she noticed a change. “Why isn’t he cutting the vines?” she recalls thinking. “Why isn’t he tending to his man cave in the garage?”
Always punctual in the past, Kevin started showing up late for everything. “He really couldn’t care less if he was inconveniencing someone,” she says.
When Diane shared her concerns with the couple’s primary care physician, he brushed them off and suggested marriage counseling for the couple. That went on for six months. At that point, Diane insisted, she needed to circle back for a medical evaluation: “I think my husband is sick.”
The family wondered if Kevin was depressed, but he always denied it. Doctors who had known him for years never raised the possibility, Diane says, “because he was still funny and charming in the early stages at appointments.” When other doctors and therapists did ask if he was depressed, he’d say no.
As Kevin’s apathy increased, his personal hygiene and grooming deteriorated. “My husband was pretty dapper,” Diane says. “He just didn’t want to brush his teeth anymore.” At times, she says, he’d hold the electric razor in his hand without bringing it to his face to shave.
Diane did everything possible to help Kevin through the activities of his daily life. She cajoled and encouraged him with reminders each step of the way, starting with getting out of bed in the morning. She adapted lyrics from familiar songs to prompt him on basic tasks.
It was becoming apparent that Kevin’s apathy was only one part of a much larger problem. During a visit to his extended family, where everyone could see something was wrong, a physician relative advised him to see a neurologist.
Eventually, in 2014, after a battery of tests and some unneeded treatments, Kevin was referred to the UCSF Memory and Aging Center. He was diagnosed with a type of dementia known as “behavioral variant frontotemporal dementia” or bvFTD. He was also found to have anxiety for which he was prescribed medication.
Kevin’s apathy was closely intertwined with a decline in his brain’s executive functioning, Diane believes. That explained a lot, in retrospect. For instance, in 2008, at 60, he had lost his job, which he attributed to a personality conflict. Years later, Diane learned the real issue was that he wasn’t getting his work done.
Inevitably, as Kevin’s condition worsened, caregiving at home could no longer meet his needs. He received increasing care in long-term care facilities until his death in June 2018 at 69.
According to new research from the Netherlands, apathy occurs in about 20 percent of patients who visit memory clinics. Those who have apathy face a much higher risk of developing dementia in the near future compared to those without apathy, according to the evidence review of 16 studies including nearly 7,500 participants ages 69 to 82.
“The relative risk increase actually seems greater in younger individuals and those with better cognitive performance,” according to Jan Willem van Dalen, lead author of the study published July 18 in JAMA Psychiatry. The presence of apathy could potentially serve as a useful, noninvasive, easily measurable indicator of early dementia, says van Dalen, who is a researcher in the department of neurology at the University of Amsterdam.
Among older adults living in the community without any cognitive impairment, mild apathy symptoms — diminished interest, energy and outgoingness — were associated with an up to 70 percent increased risk of developing dementia over the next six to eight years, the researchers had previously found.
Types of Apathy
Apathy can occur in different types of dementia, including Alzheimer’s disease. It may show up at early, middle or later stages, says Robin Ketelle, a clinical nurse specialist with the UCSF Memory and Aging Center. People can exhibit several types of apathy:
— “There’s motoric or movement apathy, where they just don’t initiate movement that much,” Ketelle says. “They sit more. They watch TV more. Or they just stay in bed longer.”
— She describes an “activities of daily living” sort of apathy: “They aren’t doing as much around the house or engaging in conversations, or they’re not as interested in their usual routines and activities.”
— In a more emotional type of apathy, people seem not to care about others as much. “They’re not as empathetic,” she says. People don’t realize when family members are upset, for instance, and they show little interest in others.
There’s no medication specifically meant to treat apathy, although the Alzheimer’s drug Aricept (or donepezil) may sometimes help, according to the UCSF Center’s website. While apathy is often taken as a likely sign of sadness or depression, that’s not necessarily the case.
“You could see why people would think they’re depressed,” Ketelle says. “But there is a distinction between the two.” Depression is a mood disorder, she notes. People with depression often can talk about how they feel, she says. In contrast, people may not be aware that they’ve become apathetic, she says. “They may not be as distressed or disturbed by that problem as other people around them are.” People with dementia-related apathy frequently lack insight into their behavior or how it’s changing.
“We work a lot here at our center at really trying to pinpoint the very earliest symptoms of these diseases,” Ketelle says. “Because the earlier something can be diagnosed, the more likely any kind of treatment we might have for it is going to work, or work for longer.”
About 13 years ago, Anne Fargusson was diagnosed with a form of frontotemporal dementia in which symptoms are caused by a genetic mutation. She was 48 years old.
“Before she was symptomatic, she was Superwoman.” That’s how Ed Fargusson sums up the difference in his wife before and after apathy crept into their lives. “She was a nurse with a wound-ostomy-continence specialization,” he says. “She was very active in church and in our children’s lives and with the school. She was just the busiest person. So for her to show any signs of apathy was really out of character.”
Values that once were central for Anne no longer seemed to matter, her husband says. At work, she stopped caring about sterility protocols essential to wound care.
The change in Anne’s attitude toward her twin sons, who were teens at the time her symptoms started, was most telling to Ed, a long-time minister who is now assistant to the president at the Northern California Conference of Seventh-day Adventists.
The Fargussons tried marriage counseling without success. The counselor knew something deeper was wrong, Ed says. After a period of waiting to see a neurologist, he says, they sought psychiatric treatment in the interim, leading to a misdiagnosis of bipolar disorder. Eventually, the connection was made between Anne’s behavior and that of her late father who had dementia.
Marriages aren’t the same when romance is one of the feelings that goes away in the person with apathy. “I had to come to grips with the fact that it’s the disease,” Ed says. “This is not who she used to be.”
Now 61, Anne is managing surprisingly well. She’s adapted by educating herself about her condition and relearning how to present herself in public, Ed says: “She’s actually out of the house right now at the grocery store, shopping for herself.”
Attending support groups has been helpful for Ed, who currently leads a group for caregivers of loved ones with FTD. “The connection with others on the same journey has been very valuable to me,” he says. “We all agree that unless you’ve experienced it, you don’t get it.”
Finding peers is crucial, Diane Keller agrees, whether through a Facebook group or in person. Finally, she says, it’s essential to locate a research facility like the UCSF Center to get the correct dementia diagnosis.
Apathy often accompanies a decrease in the brain’s executive function, which includes the ability to plan, organize and execute activities. Therefore, caregivers might need to take a more active approach. Ketelle suggests trying the following strategies:
— Reminders and perhaps some coaxing might be enough for some people.
— To provide structure, create a daily, weekly or monthly schedule of activities.
— Routines that are heavy on exercise, activities and social engagement help reduce the hours spent passively sitting.
— Consider simpler, more “automatic” exercise like walking.
— People may respond to seeing their grandchildren or other familiar faces.
“Sometimes, in dementia, it’s just hard for people to sustain the length of an interaction that they used to be able to,” Ketelle says. “So, if people can stay engaged for 10 minutes rather than two hours, that’s still kind of good.”