Anticipatory grief among close relatives of patients with Parkinson’s Disease

Several illnesses cause suffering and pre-death grief among close relatives, as in cancer and dementia. This might be the case also at Parkinson’s Disease (PD). We aimed at getting grief self-reports of relatives of PD patients using the same instrument (AGS) as in former grief studies to see similarities and differences. Anticipatory Grief Scale (AGS) and questions about background variables were sent to PD caregiver support groups in Sweden to be handed out to the members at their meetings. Close relatives of persons with Parkinson’s disease (PD) reported feelings and reactions on the AGS, and the results were compared with those from relatives of dementia patients in a former study also using the AGS. Self-estimations about the duration of illness, the condition at the time for questioning, and the perceived quality of care of the relative with PD were also made. The study showed an overall stressful situation including feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk. The PD and dementia groups appeared to show much more anticipatory grief similarities than dissimilarities. The duration of the disease did not influence the grief reactions, which, however, was shown for perceived quality of care as regards irritability and preoccupation thinking of the ill relative. Also the respondents’ perception of a bad condition of their relatives showed increased reports on loneliness, a need to talk about the illness, personal dysfunction, and not planning ahead.