Prevalence and predictors of prolonged grief disorder, anxiety and depression in bereaved ALS family caregivers: a national survey of distress and support needs after bereavement.

Objective: The distress of amyotrophic lateral sclerosis (ALS) family caregivers may not end after bereavement. Yet, the prevalence of psychological distress and support needs after bereavement are unclear. This study examined the prevalence and predictors of prolonged grief disorder (PGD), anxiety and depression, and level of needed and received support after bereavement.

Methods: We conducted a cross-sectional online survey of a national cohort of bereaved ALS family caregivers recruited through the National Rehabilitation Center for Neuromuscular Diseases in Denmark. Questions included disease-related factors, care involvement, burden (Zarit Burden Inventory), loneliness (Three-Item Loneliness Scale), coping style (CSQ-37), PGD (PG-13), anxiety/depression (HADS), time since bereavement, needed and received support during and after ALS.

Results: A total of 162 caregivers (46.4%) with a median of 24 months since bereavement responded. PGD prevalence was 5.6%, anxiety 22.2%, depression 16.0%. PGD was predicted by more caregiving hours. Anxiety and depression by high emotional coping and not receiving the needed information post bereavement and, anxiety, also by a more recent bereavement. Half of the participants had needed information about ALS after bereavement with 17.4% receiving it to a small degree and 32.3% not at all. Nearly 80% had needed emotional support with 31.0% receiving it to a small degree/not at all.

Conclusions: Caregivers may be distressed for a long time. Healthcare professionals should offer information about ALS to bereaved caregivers and screen caregivers for PGD, anxiety, depression, and coping style to offer targeted interventions post bereavement. Future longitudinal studies should investigate predictors for post-loss psychological distress including pre-loss anxiety/depression and formal care.