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Handling Dementia's Other Symptoms

Treating sleeplessness and anger, for instance, are challenges for caregivers and doctors alike. Plus, the latest research

Young woman consoling depressed mature woman.

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At its annual conference today, the Alzheimer’s Association (AA) highlighted research on treatments for some of the noncognitive symptoms people with dementia often experience. Such behavioral and psychological symptoms of dementia — agitation, apathy, mood changes, hallucinations, sleep disturbances, wandering and the like — are often among the most challenging for family members and caregivers to handle. They're also particularly difficult to treat since no drugs are approved to specifically address these dementia-related symptoms, which are often the leading reasons patients are placed in assisted living facilities or nursing homes, according to the AA.

"Most people think about Alzheimer's disease as being a forgetfulness disorder, but a quarter of people present with nonmemory, noncognitive changes," says James M. Noble, M.D., an associate professor of neurology at the Columbia University Irving Medical Center and a faculty member at the Taub Institute for Research on Alzheimer's Disease and the Aging Brain in New York City. "Noncognitive symptoms become quite stressful for caregivers. Seeing changes in personality in important relationships that may have been previously loving can be very challenging."

Mike and Cheryl Belleville of Bellingham, Mass., can personally attest to this. In 2014, Mike, then 52, was diagnosed with younger-onset Alzheimer’s disease. "I was always a laid-back kind of guy and easy to get along with — that changed, 180 degrees," says Mike, who was a technician for Verizon for almost 20 years and has three grown children. "I'm very quick to anger and I can't control it. It just comes over me like a wave." 

"I never know what I'm going to walk into — there's no predicting how his anger is going to be," says Cheryl, who notes that her husband often has no recollection of encounters in which he's yelled at family members. 

It was the changes in Mike's temperament and behavior that first led him to see a neurologist, who made the diagnosis after conducting various tests. After Mike began having hallucinations, Parkinson's-like symptoms and sleep disturbances (in which he acts out bad dreams, sometimes violently), his diagnosis was changed in 2016 to Lewy body dementia.

For Rosita Perez, 37, of West Deptford, N.J., dealing with her mother's wandering and unpredictable behavior or moods were among the biggest challenges related to her Alzheimer's. "Every day was different," says Perez, an office manager and mother of three. "Sometimes she would get agitated or have hallucinations. She'd sleep during the day but not at night. I put Christmas bells on the doors so we would hear her when she walked around when everyone else in the house would sleep." When Perez attempted to pay her mother's bills or get her to take a shower, her mother often became very combative. "I was always trying to tiptoe around her because I didn't want her to get agitated," Perez recalls.

In discussing the conference's research news, Maria Carrillo, chief science officer of the AA, shared how her father-in-law's erratic sleep patterns made caring for him extremely difficult, especially since he woke every two hours at night. "Until you live it, you don't really realize what it means to be waking up every two hours," she says. "You're actually waking up, and then for a half-hour you're working with this individual, and then you try to go back to sleep for maybe an hour and a half, and then you need to wake up again! It is absolutely intolerable." And while such noncognitive symptoms are often the reason loved ones are placed in a nursing home, Carrillo says her father-in-law's sleeplessness made it impossible for him to be taken care of in one. "A nursing home doesn't have the staff to be one-on-one, so we would find him strapped to a wheelchair or a bed, and that's not how you really want your loved one to be," she says.

There's no way to predict who's likely to experience noncognitive symptoms associated with dementia, but it can vary by the stage of the process and the location of the brain that's affected, says Ron Petersen, M.D., director of the Mayo Clinic Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging in Rochester, Minn. In the early stages of Alzheimer's disease, apathy, anxiety, agitation and/or mild depression often occur, along with mild cognitive impairment. As the person gets into a dementia state, he or she can experience anosognosia, a state in which they become placid and awareness of changes in their own mood, cognition or behavior is impaired. "Anger and depression can occur, but usually when the person is aware of what is happening," Petersen says. In later stages of the disease, paranoia and hallucinations can occur, he adds, while "sleep disturbances can come at any stage of the process." 

Overall, these noncognitive symptoms can be very difficult to treat, Petersen notes. Sometimes, doctors will prescribe antidepressants to treat mood issues, sleep aids to try to improve sleep disturbances and/or atypical antianxiety medications to treat behavioral symptoms. But antipsychotic drugs, in particular, are associated with an increased risk of death in people with dementia.

And new research from the University of East Anglia in the U.K. found that when people with dementia took the hypnotic "Z-drugs" (zolpidem, zopiclone and zaleplon) that are often used to treat insomnia in older adults, they had a 40 percent increased risk of a fracture, with higher risks resulting from higher doses.

Fortunately, research is beginning to shed light on how new treatments may help with some of these issues. Among the highlights presented at the meeting today:

  • Researchers from Rensselaer Polytechnic Institute in Troy, N.Y., tested whether a tailored lighting system that provides alternating periods of illumination, which stimulated or suppressed the body's release of melatonin, a hormone that regulates sleep-wake cycles, could help improve sleep patterns, mood and behavior in people in nursing homes with Alzheimer's. With the lighting intervention, the participants experienced a significant decrease in their sleep disturbances, depression and agitation. (As the study authors note, these findings are especially relevant given that the constantly dim lighting typical of residential care facilities may be an underlying cause of the sleep pattern disturbances so commonly found in people with Alzheimer's disease.)  
  • In a 14-week randomized, double-blind clinical trial, researchers at the Sunnybrook Research Institute at the University of Toronto found that nabilone, a synthetic cannabinoid, improved agitation significantly in adults with moderate to severe Alzheimer's dementia and agitation. The downside: Sedation was a fairly common side effect.

"We need all of the safe drugs and nonpharmacological approaches we can get for people who are suffering from these noncognitive symptoms," says Carrillo. "That's starting to happen. We need more of that, and we wish it was further along. We need treatments that are more specifically for dementia instead of just trying to put Band-Aids on these critical situations."

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