Italian researchers have found that people who care for family members with amyotrophic lateral sclerosis (ALS) are more likely to develop depression than the patients themselves. The study’s findings appear in the March 20 issue of Neurology.
“Caregivers of ALS patients tend to be progressively more depressed and more burdened over time, whereas the patients remain more or less stable in term of depression and quality of life, even if they present a worsening of their clinical status,” said Dr. Adriano Chio, from the department of neuroscience at the University of Torino in Italy. Chio co-authored the study.
31 ALS patients and their primary caregiver – in most cases, a family member – were interviewed twice for the study over a nine-month period. Researchers found that patients’ general mental health did not waver significantly over the course of the study. By contrast, their caregivers’ mental health deteriorated during the same period. Depression increased for both patients and caregivers, but the increase was more dramatic for caregivers.
This research “teaches us that when caring for ALS patients, we have also to pay attention to their caregiver’s needs,” said Chio. “Moreover, we believe that health professionals involved in the care of ALS patients should help caregivers to activate all resources in order to relieve their physical and psychological burden.”
“I’m so glad this study has been done, because it’s so critical to focus on the caregivers,” said Dr. Catherine Lomen-Hoerth, director of the ALS Center at the University of California, San Francisco. “From a patient’s perspective, the hardest time is at diagnosis, and once patients acclimate to that, I find they’re really happy — as opposed to the caregivers for whom it’s almost the opposite story. Where early on it’s not affecting their life as much because the patient is fairly functional, later on, it’s almost like caring for a baby.”
According to the ALS Association, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive neurogenerative condition. Over time, ALS kills motor neurons, which leads to loss of voluntary muscle action and sometimes to complete paralysis. Most patients who suffer from ALS retain full cognitive function.
Currently, there is no cure for ALS, and the cause of the disease is not fully understood by researchers. However, one medication, Rilutek, has been approved by the Food and Drug Administration for the treatment of ALS. Rilutek slows the progression of ALS. Other drugs have shown promise in clinical trials.
Overview of ALS: http://www.alsa.org/als/what.cfm?CFID=3637525&CFTOKEN=98949594