THURSDAY, September 13, 2018 (HealthDay News) – The heads of patients with amyotrophic lateral sclerosis (ALS) have been harmed by the disease, despite years of conviction that this was not the case, a new study shows.

In fact, in the later stages of ALS, also called Lou Gehrig's disease, patients experience a decline in their thinking and language skills, researchers report.

"This is the first study to show that there are changes in cognition and behavior in the earliest stages of ALS, and that patients are increasingly affected in the later stages of the disease," said lead researcher Sharon Abrahams. She is a professor of psychology at the University of Edinburgh in Scotland.

"In the final stage of the disease, only a very small proportion of patients – 20 percent – are free from cognitive changes or behavioral changes," said Abrahams.

Cognitive changes include difficulties in overarching executive functions – for example, problems with planning, attention, organization, decision-making, and problems with social cognition and language, the results of the study showed.

"The behavioral changes include apathy and disinhibition," Abrahams said.

These mental illnesses are largely not caused by dementia, she added. "Only a small proportion of ALS suffer from dementia," said Abrahams.

Many other patients will experience only mild mental and attention deficits, but "Patients and caregivers must first realize that these changes are part of ALS and not some additional disease," Abrahams said. Then they can ask their doctors for advice on how best to handle these changes.

ALS is a rare disease that affects the nerve cells responsible for controlling muscle movement, such as: B. walking or speaking. ALS gets worse over time and eventually leads to death, most often due to respiratory failure. There is no cure for the disease.

For the study, Abrahams and colleagues compared 161 people with ALS to 80 people who did not have the disease. All participants tested for thinking skills and the participants or their caregivers were asked about symptoms such as apathy and loss of sympathy or empathy.

The subjects with ALS had lower scores in all thinking than those without the disease, except for the visual-spatial ability that is not known to be affected by ALS.

Overall, 29 percent of ALS subjects had thinking skills issues that were most commonly seen in the verbal skills test where people enumerate as many things as they can, starting with a specific letter. They also had worse results in testing, where two things were noticed at once, the researchers found.

Among 149 people with ALS who had information on behavioral symptoms, 45 percent had no problems, 22 percent had a symptom, 14 percent had two symptoms, and 20 percent had three or more symptoms, the report said.

The most common symptoms were apathy, which affected 31 percent; Loss of sympathy or empathy, which affected 28 percent; and changes in eating habits that affected 25 percent.

The researchers also found that the worse the disease was, the more problems people had with thinking skills. They also had a greater number of behavioral symptoms.

A limitation of the study is that patients were examined at a specific time. The participants were not observed to see how thinking and behavioral problems changed as the disease progressed.

"Routine early screening is recommended to identify these changes early in the disease," said Abrahams.

Strategies can help minimize the impact of these problems on caregivers and patients, she explained. This may include assistance with planning and decision-making, or assisting a supervisor in overcoming some challenging behaviors.

The results were published online September 12 in the journal neurology,

Paul Wicks is vice president of innovation at PatientsLikeMe, a website for sharing patient health information. He is co-author of an editorial accompanying the study.

"Unfortunately, we have been denied for over 100 years and patriarchically keep the whole story back from patients and caregivers," said Wicks.

"When trying to avoid fear, we may have accidentally caused more," Wicks added. "Now is the time to face the fact – in ALS the mind is often affected – and we can begin to better support families."

More information

Visit the ALS Association for more on the disease.

SOURCES: Sharon Abrahams, Ph.D., Professor, Psychology, Edinburgh University, Scotland; Paul Wicks, Ph.D., Vice President, Innovation, PatientsLikeMe, Cambridge, Mass., September 12, 2018, neurology, online


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