Depression is common among ALS patients at all stages of the disease and becomes worse when the primary caregiver is overburdened, according to a 2001 survey of 2,576 people with ALS.
The ALS Patient Care database is a large-scale "report card" on how U.S. physicians treat ALS and how people with ALS experience their illness and health care.
Some 43 percent of those surveyed described themselves as both depressed and receiving treatment for depression. This figure is higher than the national average for both stroke and cancer patients.
Depression was more common among women with ALS, and was present at all levels of disability. Symptoms of depression include despair, numbness, irritability, loss of enjoyment in favorite activities, sleep difficulties, loss of appetite and giving up.
Three phases of ALS
Linda Boynton de Sepulveda, a nurse-researcher who manages the MDA/ALS Clinic and Research Center at the University of California at Los Angeles, compiled the report. She notes that depression can be triggered by the psychological readjustment required by each of the three phases of ALS.
Boynton de Sepulveda identifies these phases as diagnostic (when people have disturbing symptoms and are chasing a diagnosis); palliative care (when the steady loss of function can be overwhelming); and terminal (when people confront fears of dying and spiritual or existential concerns).
Linda Boynton de Sepulveda
Caregivers need care, too
Although past studies have shown that social support can help protect chronically ill patients from depression, the ALS survey data yielded a new perspective.
"Caregiver burden," which occurs when caregivers experience poor health, financial worries and lack of help, had a negative influence on the patient's coping skills at all levels of disability.
"Caregivers need to care for themselves," Boynton de Sepulveda reported, suggesting medical checkups, respite care, caregiver support groups, counseling and working with a case manager/social worker to identify sources of income and assistance.
"By attending to the needs of the caregiver, both the patient and the caregiver can reduce feelings of distress," she said.
Boynton de Sepulveda advised that depression is a serious risk in ALS that should be recognized and managed with various strategies, including medication.