Anticipatory Grief Among Close Relatives of Patients with ALS and MS

Abstract

A postal survey was sent to close relatives of Swedish patients with ALS and progressive MS to assess preparatory grief according to the Anticipatory Grief Scale (AGS), together with age, relationship, duration of the illnesses, perceived quality of care, present need of care, caregiver burden, and need of support. The relatives in the two illness groups generally responded in similar ways on the AGS, e.g. reporting closeness, preoccupation, tearfulness, and feelings of injustice regarding the illness. More MS relatives agreed on being irritable and wondering about life without the disease; they reported increased competence, but less ability to move ahead with life. The relatives’ need to talk to somebody outside the family and the hospital staff was more frequently reported by the MS relatives than by the ALS relatives. Overall, the need to talk correlated to feelings of loneliness, longing, tearfulness, loss of interest in daily activities, worries for the future, irritability and sleeping problems. However, surprisingly many of the ALS and MS relatives reported planning for the future and had discovered new personal resources after the diagnose, possibly indicating an overweight of responders adjusted to the situation and therefore expressing less sorrow.