Kathy Richards, PhD, RN, FAAN and research professor at the UT Austin School of Nursing, knows personally the heartache of watching a loved one succumb to dementia and its many distressing symptoms.
“My aunt was a nurse. Not only that, she was head nurse in a long-term care home,” Richards said. “In her 60s, she began to have memory problems and was diagnosed with Alzheimer’s disease. She and her husband both loved fishing and had retired to a home on a lake when the nighttime agitation began.”
Nighttime agitation or “sundowning” is the appearance or exacerbation of behavioral disturbances, such as wandering and aggression, occurring in the afternoon or evening in persons with Alzheimer’s disease. The increased confusion, anxiety and agitation in the body’s sleep-wake cycle can lead to more behavioral problems, which increases the burden and costs of caring for persons with the disease. The result is that people with Alzheimer’s often must be cared for in more restrictive living environments.
Richards’s aunt began wandering in the nighttime, and, in her case, the result was tragic.
“She walked out of the house one night undetected, slipped into the boat, cast off and drowned,” she said. “These kinds of events are devastating for family members, which is the reason I want to fix it.”
Richards has more than 20 years’ experience in translational sleep and aging research. Her focus has been on improving sleep and delaying cognitive decline in older adults. Currently, she and colleague Christine Kovach, a research professor in aging at the Jewish Home and Care Center at the University of Wisconsin–Milwaukee, are co-principal investigators of a $3.9 million, five-year award from the National Institute on Aging designed to improve treatment of nighttime agitation in persons with Alzheimer’s disease.
“Safe, effective treatments for nighttime agitation are lacking. One major cause for these past failures has been the ‘one size fits all’ approach,” Richards said. “The precision medicine method we are using tailors treatment to the specific sleep disorder restless legs syndrome, or RLS, that causes discomfort and an inability to sit or lie still in the evening and night. We hypothesize that RLS may be a cause for nighttime agitation and sleep disturbance in people with Alzheimer’s.”
Nighttime agitation behaviors are often treated with powerful antipsychotic drugs, but alarming statistics on the prevalence of these medications and their danger to the health of persons with Alzheimer’s disease has resulted in a federal mandate to reduce their use and frequency. Richards hopes this intervention will lead to less dependence on dangerous antipsychotic medications.
This is the first time that a new diagnostic tool, the Behavioral Indicators Test–Restless Legs, that Richards and her team developed and validated for diagnosing RLS in persons with Alzheimer’s, will be used in research on nighttime agitation. The tool is designed to diagnose RLS in people without the verbal ability to report symptoms.
Her current eight-week, double-blind, randomized controlled trial is getting underway and will include 136 long-term care residents with nighttime agitation and RLS living in long-term care settings in Central Texas. Residents will receive either gabapentin enacarbil (Horizant™), the FDA-approved drug for RLS, or a placebo.
“Nighttime agitation is the number one reason why people with Alzheimer’s cannot be cared for at home,” Richards said. “If we can find a better and more precise way to treat nighttime agitation, we can improve the quality of life for many persons who are living with Alzheimer’s disease.”