Life Factors Affecting Depression and Burden in Amyotrophic Lateral Sclerosis Caregivers

Amyotrophic lateral sclerosis (ALS), similar to other degenerative disorders, can be especially challenging to cope with for friends and relatives, as well as for the patient. Often, as the disease progresses, a full-time caregiver is necessary to provide consistent support and care. While previous studies have proposed that the majority of caregivers of ALS patients are not clinically depressed, it has been observed that some depression symptoms are still present and that ALS caregivers may continue to experience changes in temperament. The purpose of this study was to determine which factor or factors in a caregiver’s life contribute to the caregiver experiencing a decline in his/her perceived quality of life and/or an increased overall feeling of burden. The five factors assessed were financial status, social support, patient disease progression, employment, and religious affiliation. Caregivers were evaluated using the Beck Depression Inventory Revised survey, Zarit-Burden Interview, and a demographic survey. This information was used to assess overall mental and emotional stress exhibited by the caregivers. Age, sex, financial burden, religious affiliation, and the daily hours spent both with the patient and actively caregiving were all shown to have an association with Beck Depression Inventory scores, indicating that these factors are significant risk factors for depression symptoms. Both age and the daily hours spent caregiving were also associated with higher Zarit-Burden Interview scores. Additionally, employment status and social support were found to be associated with Zarit-Burden Interview scores. Social support was the only factor in the caregivers’ lives found to be protective, as caregivers citing adequate social support systems had lower Zarit-Burden Interview scores. The other factors associated with either depression or burden were all found to be risk factors. There was no statistical significant association between a caregiver’s BDI or ZBI score and patient progression based on the patient’s ALS-FRS score. Using this information, new interventions and programs can be established, with the goal to prevent caregiver depression and alleviate caregiver burden as much as possible. Establishing a caregiver-specific support group is a logical first-step that may be highly beneficial for ALS caregivers. The information collected in this study is also important from a public health standpoint because these results will enable healthcare providers to better understand the stress and burden of caregivers, allowing more appropriate interventions and resources to be implemented and offered throughout the course of the disease. It will also aid in the more general understanding of the mental health effects of caring for dependents with degenerative diseases