ALS Care Poses a Mental Health Challenge
Depression risk is higher for caregivers than for those with the disease
 (HealthDay News) -- The demands of caring for someone with amyotrophic lateral sclerosis, or ALS, put caregivers at a higher risk of depression than the person they're caring for, research has found.
"Caregivers of ALS patients tend to be progressively more depressed and more burdened over time, whereas the patients remain more or less stable in terms of depression and quality of life, even if they present a worsening of their clinical status," study co-author Dr. Adriano Chio, from the neuroscience department at the University of Torino in Italy, told HealthDay .
More than 5,000 Americans are diagnosed each year with ALS, also known as Lou Gehrig's disease, after the famed baseball player who died of the disease. According to the ALS Association, as many as 30,000 people are currently living with the disease -- a degenerative illness that affects the function of the muscles and the nerves. It causes a progressive loss of muscle mass and control, and eventually causes paralysis.
There is no cure for ALS, and only one drug, Rilutek, has shown promise in slowing the progression of the disease.
To assess the effect of the disease on caregivers, Chio and his colleagues interviewed 31 people with ALS and the people who cared for them, who usually were family members. None of the ALS patients had a paid medical professional as a primary caregiver.
The researchers then followed the patients and their caregivers for nine months. During that time, the patients' mental state remained stable. Yet during that same period, the mental status of the caregivers worsened considerably, according to the study, which was published in the journal Neurology .
At the start of the study, caregivers had scored their quality of life higher than patients had scored theirs. But at the end, the caregivers' quality-of-life scores averaged below those of the patients.
A lack of leisure time and the inability to leave the house or visit with friends along with feelings of hopelessness, sadness and isolation were among reasons cited for the decline in caregivers' mental health.
The study "teaches us that when caring for ALS patients, we have to also pay attention to their caregiver's needs," Chio said. "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."
Dr. Catherine Lomen-Hoerth, director of the ALS Center at the University of California , San Francisco , told HealthDay that she agreed with the need to focus on the caregivers.
"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," she said. "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."
Caregivers frequently resist mentioning their own needs "because they feel it's selfish to complain when their loved ones are going through all this," Lomen-Hoerth said. She urged "having a social worker to interact with the caregiver alone is very important," but also stressed that "primary care physicians need to ask their patients what in fact is going on with their spouse."
On the Web
To learn more about ALS, visit the National Institute of Neurological Disorders and Stroke.
SOURCES:
HealthDay News ; Adriano Chio, M.D., Department of Neuroscience, University of Torino, Italy; Catherine Lomen-Hoerth, M.D., Ph.D., director, ALS Center, University of California, San Francisco; March 20, 2007, Neurology ; ALS Association (www.alsa.org)
Author:
Serena Gordon
Publication Date:
April 14, 2008
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