Researchers found that anxiety was mainly observed in those with a low caregiver burden, and depression was seen more widely in those with a high caregiver burden.
Findings from the study will be presented April 26 at the annual meeting of the American Academy of Neurology in a poster, titled “Longitudinal Predictors of Caregiver Burden in Amyotrophic Lateral Sclerosis: A population-based cohort of cognitively intact patient-caregiver dyads,” during a Behavioral and Cognitive Neurology session. The event runs through April 27 in Los Angeles.
The study included 85 primary caregivers of 85 ALS patients. ALS is associated with problems with motor movement, cognitive abilities, and behavioral functions, all of which contribute to burdens for caregivers. The ALS patients in this study had a relatively preserved cognitive function.
Caregiver burden was measured with the Zarit Burden Interview (ZBI), a 22-item self-reporting measure used to estimate the degree of caregiver burden. It is often used for those who care for elderly people.
Caregivers were also tested using the Hospital Anxiety and Depression Scale (HADS), a standard self-reporting measure of anxiety and depression.
Cognitive and behavioral function were measured in the ALS patients, using the Edinburgh Cognitive-Behavioral ALS Screen (ECAS), an assessment performed by a healthcare professional in the clinic or in the patient’s home.
Disease progression was also measured in the patients, using the ALS Functional Rating Scale (ALSFRS-R), a periodic assessment done by a physician.
Caregivers were classified as high or low burden using the Zarit Burden Interview. The presence of anxiety, as measured using the HADS, predicted low caregiver burden, while the presence of depression predicted high caregiver burden. Overall, a high HADS score was the largest predictor of caregiver burden.
According to the researchers, factors that determine the degree of caregiver burden in ALS, especially the effects of psychological distress, have not been well-characterized. As such, the methods outlined in this study could be used by healthcare professionals to identify caregiver burden, allowing them to provide support programs for caregivers.
In patients with “relatively preserved cognitive function, anxiety and depression, as measured by the HADS, were the best predictors of caregiver burden,” the researchers wrote.
“This observation provides a mechanism by which caregiver burden can be identified by healthcare professionals and a program of intervention initiated,” they said.