Anticipatory Grief among Close Relatives of Patients with Parkinson’s Disease

Abstract

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.

Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care

“…According to the constructor, the AGS items should be summed into a total score ranging from 27 to 135 with a higher score indicating higher levels of anticipatory grief. Eight items (2,5,8,11,19,22,26,27) have a positive bearing and therefore must be reversed before the total score is calculated. No subscales or cut-off scores have been reported for the AGS.…”

“…According to Theut et al, the AGS also investigates the reactions of grief, but before the loss. The AGS was originally developed as to be used on family caregivers of patients affected by dementia, however, the wording could be changed and used in other contexts, such as in cancer and palliative care [7,[18][19][20]. Although it has been used internationally, one important limitation is that the AGS has not been rigorously validated.…”

Living with Parkinson’s disease: A qualitative study of spousal perspectives

“…A review of recent literature reveals that most of the research conducted in the interest of exploring the experiences of spouses of people with PD has focused specifically on the experience of the spouse as a caregiver (Carter etal., 2012; Johansson and Grimby, 2014; Lee etal., 2019; McLaughlin etal., 2011; Tan etal., 2012; Vatter etal., 2018). Findings observed through quantitative studies revealed a significant relationship between disease stage and level of caregiver strain (Hand etal., 2019).…”

“…Findings also showed evidence of psychiatric disorders, including major depression, anxiety disorder, and insomnia disorder (Lee etal., 2021). Several studies found evidence of grief for non-death losses and anticipatory grief among caregiving spouses of individuals with PD (Carter etal., 2012; Johansson and Grimby, 2014). That is, grief that may develop due to prolonged periods of witnessing a loved one’s struggle with illness, even if the illness culminates in death that occurs at an expected life stage (Boerner etal., 2015; Doka, 2010).…”

“…While most of the studies to date focused on the experiences of caregiving spouses of people with PD, very few studies explored the experiences of female spouses who are not currently or have not yet become informal caregivers to their respective spouses with PD (see Lyons etal., 2021). Preliminary findings showing evidence of grief processes (Carter etal., 2012; Johansson and Grimby, 2014) suggest that research on the experiences of spouses of people with PD has not yet encompassed the experience in its entirety.…”