Researchers develop medication-free approach for behavioral changes in Alzheimer’s

June is Alzheimer’s & Brain Awareness Month, which provides an opportunity for people to learn about brain diseases that affect millions. In the U.S., about one out of every nine people aged 65 and older— about 6.5 million — have Alzheimer’s disease. 

Alzheimer’s is primarily thought of as a disease that affects memory, but it also causes significant behavioral changes. Those can include aggression, depression, hallucinations, wandering and more. These behaviors are usually the most challenging aspects of care and cause caregivers the most stress and depression. 

Behavior is what puts people in nursing homes and is the reason for the overuse of psychiatric medications for people with dementia.”—Helen Kales

Overmedication is common and widespread

To control these behaviors, people with Alzheimer’s and dementia are often medicated — and overmedicated — with drugs like antipsychotics, antidepressants, anxiety medications, mood stabilizers and sleep medication. 

“Behavior is what puts people in nursing homes and is the reason for the overuse of psychiatric medications for people with dementia,” said Helen C. Kales, an expert in geriatric psychiatry. Kales is the Joe P. Tupin Professor of Psychiatry and chair of the Department of Psychiatry and Behavioral Sciences. “About 70% of people with dementia are put on psychiatric medications. Much of that prescribing is for sedation.” 

A 2018 report from Human Rights Watch found that an estimated 179,000 people in nursing facilities are overmedicated with psychotropic drugs — drugs that affect behavior, mood, thoughts or perception. They are often prescribed to patients who don’t have the diagnosis for which the drugs are approved and without informed consent from family members or the patient. 

Kales has been working on ways to manage behavioral problems without medication for most of her career. Her early research concluded that the drugs were ineffective, had many side effects, and were often associated with increased death rates — even in the short term. 

Her experience with one patient in a hospital earlier in her career has stayed with her. A man who had become agitated was put on high doses of antipsychotics. The drugs made him sleepy. Even when he was awake, he was so affected by the medications he could hardly walk. One day, Kales found him in the dining area, asleep with his face in a bowl of cereal. 

“In talking with the staff, we brainstormed ways they could look at the factors contributing to his episodes as opposed to sedating him to the point that he was incapacitated,” Kales said. 

A medication-free solution turns caregivers into detectives

In addition to potentially putting the patient’s overall health at risk, overmedication can mask the underlying reasons for the disruptive behavior, which may have serious underlying causes. “The change in behavior tells us that something is happening that we need to pay attention to,” Kales said. “It could be an expression of the person being in pain or having an infection or injury. Or maybe they are hungry, thirsty, or tired, and their behavior expresses an unmet need.” 

A few years ago, Kales and Laura N. Gitlin, a distinguished professor and dean of Drexel University's College of Nursing and Health Professions, launched a new approach for dealing with behavioral changes. Known as DICE, the step-by-step method teaches caregivers to become “behavioral detectives.” They are trained to: 

• Describe a behavior, thinking about what happens and the context in which it occurs
• Investigate its possible causes
• Create and implement a plan to address the behavior
• Evaluate the results to determine what worked

“Say, for example, someone suddenly starts getting agitated when it’s time for a bath. Maybe it turns out they are very modest and feel uncomfortable with a new caregiver of a different gender. Or maybe the shower or bath is too hot or too cold. By ‘describing’ and ‘investigating’ the behavior, it’s easier to find a non-pharmacological intervention,” Kales said. 

Teaching caregivers about new ways to solve behavioral problems can help ease their burden while improving the patient's experience. “By studying the DICE method, we hope to provide a non-medicated solution to managing the behavioral and psychological symptoms of dementia,” Kales said. 

Kales recently received a grant from the NIA IMPACT Collaboratory for a pilot study of the DICE method. In addition, in 2019, the National Institute on Aging awarded Kales and Gitlin a nearly $4 million grant to study DICE on an online platform. 

More information about DICE, including how to register for online training, can be found here.