Palliative care needs in Parkinson’s disease: focus on anticipatory grief in family carers

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Fox, Siobhán
Azman, Atheerah
Timmons, Suzanne
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Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.
Anticipatory grief , Parkinson’s disease , PD , Palliative care
Fox, S., Azman, A. and Timmons, S. (2020) ‘Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers’, Annals of Palliative Medicine, 9(Supplement 1), pp. 34-43. doi: 10.21037/apm.2020.02.04