This story was originally published in the February 16 issue of Fourth Estate.
Mason nursing professor, Dr. Kathy Richards, recently submitted a proposal to the National Institute of Health to examine a common treatment for Restless Legs Syndrome (RLS) in Alzheimer’s patients. Richards has spent the last fifteen years researching the link between patients who have been diagnosed with Alzheimer’s and RLS. She has spent over a year developing another way to diagnose RLS in Alzheimer’s patients.
Richards explained that many Alzheimer’s patients become extremely agitated at night, a symptom referred to as sun downing. “They’re agitated at night, they wander, they yell, they scream, they try to get out of the house and turn on the stove, they try to cook things. They do dangerous things, as well as things that simply keep the person who’s trying to care for them awake,” said Richards.
This behavior leads to both the exhaustion of the caregiver and the patient, as well as further agitation and confusion for the Alzheimer’s patient.
“Fifteen years ago, that link was not researched very well,” Richards said, “but today we have pretty good evidence to show that sleep is very important for daytime cognitive function.”
According to the National Institute of Health, “restless legs syndrome is a neurological disorder characterized by unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them for relief. Individuals affected with the disorder often describe the sensations as throbbing, polling, or creeping.” The usual diagnostic process is lengthy, and involves many questions that Richards said are difficult for Alzheimer’s patients to answer.
“Restless legs syndrome is diagnosed with a clinical interview, a rather complex clinical interview,” said Richards. She said this can lead to frustration for Alzheimer’s patients.
The new diagnostic method that Richards and her team have come up with is much simpler than this lengthy process. Named the Behavioral Indicators Test-Restless Legs, it has three parts; first information is gathered from various charts and tests, and the patient’s caregiver is asked about their sleeping habits. Then, if the patient is able to answer some questions, they may be asked one simple question – if they have any discomfort in their legs, which only requires a yes or no response. Richards said that if a patient is having trouble answering this question, this portion of the method may be passed over without affecting the diagnosis.
The final part of the diagnostic process is observation: the patient is asked to sit down for twenty minutes, and a medical professional observes them for certain behavioral indicators: constant movement, touching their legs, having to get up and stand – all indicators of RLS.
After trying different technological and laboratory methods, Richards and her team discovered that neither worked as well as someone simply watching the patient.
“Sometimes the simple things are the best way to get what you need,” said Richards.
About 24 percent of people diagnosed with Alzheimer’s who suffer from nighttime agitation have RLS. Richards estimates that if treating these patients for RLS allows them to stay in their homes with their families longer, and preventing just one percent of Alzheimer’s patients from entering nursing homes due to this problem, $1.43 billion dollars could be saved in healthcare costs annually. According the Alzheimer’s Association, a nonprofit that supports patients and is an advocate for research, the average cost in the United States for long term heath care in a nursing home is $78,110 per year, and much of this goes toward nighttime care.
Using these figures, roughly 18,307 Alzheimer’s patients would have to stay in their homes to reach this amount of yearly healthcare savings. This number of patients is only 1 percent of people who are admitted to nursing homes every year.
Richards also has a personal connection to her research. Richards had an aunt who was diagnosed with Alzheimer’s and suffered from nighttime agitation and wanderings. She saw how difficult it was for her uncle to take care of her aunt, especially at night as her nighttime behaviors became more dangerous. Her uncle eventually had to place locks on the doors to stop her from wandering outside at night, but one evening she was able to unlock the doors and drowned in the lake outside the couple’s home. “We presumed that she wanted to go fishing,” Richards said, “Her boat was out there in the middle [of the lake].”
Richards has spent the majority of her career at the University of Pennsylvania. She has been at George Mason University for three years, although the team she worked with on this discovery is made up of scientists and physicians from the University of Pennsylvania.
Richards has spent the better part of the past year developing the new diagnostic tool for RLS, and her method is the first to diagnose RLS in this specific group of individuals who have been diagnosed with Alzheimer’s. Her findings will be in the scientific publication “Sleep” in the March 2015 issue; the online version is already posted.
Currently, she is moving on to the next part of her study – a treatment method. The proposal that Richards submitted to the NIH involves administering a drug that has already been approved by the Federal Drug Administration to treat RLS, known as Horizont.
“We’re not testing to find out if Horizont works for RLS – that’s been tested over and over again; it’s FDA approved,” Richards said. “What we’re testing is to see if by treating the restless legs, we can fix their agitation at night and improve their sleep.” In regards to the current treatment for Alzheimer’s, Richards said that “the drugs that are used – antipsychotics and sedatives – are very dangerous in older people, and they aren’t very effective.”
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