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Caring for ALS Patient Brings Emotional Strain

Family caregivers face higher risk of depression than the patient, study finds

MONDAY, March 19, 2007 (HealthDay News) -- Family caregivers of patients suffering from debilitating amyotrophic lateral sclerosis (ALS) are at higher risk for depression than the patients they care for, Italian researchers report.

"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 study co-author Dr. Adriano Chio from the department of neuroscience at the University of Torino in Italy.

The findings are published in the March 20 issue of Neurology.

ALS, also known as Lou Gehrig's Disease, is a progressive, disabling neurodegenerative disorder that typically strikes people over 40. The illness targets neurons in the brain and spinal cord, provoking a progressive loss of muscle mass and control and, eventually, paralysis.

Most patients die within two to four years after diagnosis, the authors noted, usually as a result of respiratory failure.

While the approximately 30,000 Americans currently diagnosed with ALS do not face mental impairment, no treatment to date can cure or halt the disease's assault on motor functions. Just one FDA-approved drug, Rilutek, has demonstrated some ability to slow the degenerative illness. Ongoing clinical trials are testing new ways to treat the disease.

Chio's group examined the mental impact of caring for a loved one with ALS.

The study involved 31 male and female ALS patients along with their main caregiver. The caregiver was usually a family member, and in no case was he or she a paid medical professional.

Each patient and their respective caregiver received two psychologist-administered interviews -- one at the beginning and the end of the nine-month study period. Patients and caregivers were interviewed separately.

In terms of overall psychological well-being, the mental state of the patients remained more or less stable over the study's course, while that of the caregivers noticeably worsened, irrespective of either the caregiver's age or gender, the researchers found.

Quality-of-life indicators actually improved somewhat among patients, while caregivers experienced a slight drop-off in their quality of life. In fact, while caregivers had a higher quality of life than patients at the start of the nine-month study, by study's end, patients demonstrated a better quality of life despite being in steady physical decline.

Patients pointed to a loss of physical function as the number one factor impacting their general quality of life. However, after the initial shock of diagnosis, gradual reductions in physical ability did not contribute to a worsening of their state of mind over time, they said.

Paitients' ability to maintain a consistent sense of well-being despite mounting physical obstacles could be, in part, a function of the deep appreciation for the physical and mental help offered to them by their main caregiver, Chio's team said.

In contrast, caregivers were not as adept at maintaining quality-of-life stability over time as fatigue, stress, and the emotional burden of caregiving took their toll.

Limits on the ability to take time for one's self was the primary source of caregiver frustration, the study found. Caregivers' sense of being emotionally burdened increased 11 percent by the end of the study on average, the researchers found.

Although levels of depression increased for both patients and caregivers over time, the trend toward greater depression was more pronounced among caregivers.

Six of the patients were already mild or moderately depressed at the start of the study and that number that grew to 10 nine months out, the researchers found.

Depression doubled among caregivers -- 3 were found to be mildly depressed at the outset, and 6 were diagnosed as depressed by the study's end.

A lack of leisure time and the inability to leave the home or see friends were potential reasons for the decline in caregiver mental health, the researchers said, along with feelings of hopelessness, isolation, loneliness, and sadness.

The study "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."

Another expert agreed.

"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."

"And the problem is that a lot of times the caregivers are afraid to mention their own needs and concerns," added Lomen-Hoerth, "because they feel it's selfish to complain when their loved ones are going through all this. So, I think having a social worker to interact with the caregiver alone is very important, while at the same time, primary care physicians need to ask their patients what in fact is going on with their spouse."

More information

For more on ALS, visit the ALS Association.

SOURCES: 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.
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