Caregiving for family members who have a terminal illness is an arduous and thankless task. A new study of family caregivers of people with ALS (most often spouses) finds that the caregivers are likely to become depressed and feel burdened. However, quality of life appears to be preserved for the person being cared for, i.e. the patient.
The study is reported in the March 20, 2007, issue of Neurology®, the scientific journal of the American Academy of Neurology.
“Since there’s evidence a caregiver’s mental status greatly influences ALS patients, these findings show a family caregiver’s physical and psychological condition should not be overlooked when planning ALS care,” said study author Adriano Chio, MD.
Researchers interviewed 31 ALS patient-caregiver couples at the beginning and end of a nine-month study. Couples were tested for depression and quality of life. Researchers also examined a caregiver’s feeling of burden, along with a patient’s self-perceived burden.
The study found a significant increase of burden and depression among caregivers over the nine months, while depression, quality of life, and self-perceived burden remained virtually unchanged among people with ALS.
Mild to moderate depression among caregivers jumped from 9.7 percent to 19.3 percent. Feeling burdened increased 11 percent among caregivers, with the most common complaint being not enough time for oneself. Quality of life scores dropped slightly among caregivers.
Chio says several factors may have contributed to the steadiness among quality of life and depression in people with ALS, including a patient’s acceptance of the deadly disease, or possibly cognitive impairment.
The study also found while quality of life was higher in caregivers than in patients at the beginning of the study, quality of life was higher in patients by the end.
“ALS is considered a family disease, meaning that it involves every member of the patient’s entourage. Interventions specifically designed to enhance effective communication between patients and caregivers might improve the psychological well-being of both parties, helping patients to be more aware of their caregivers’ needs, and caregivers to accept their straining, but invaluable role,” said Chio.
Source: American Academy of Neurology