ANTICIPATORY GRIEF IN CARERS OF PEOPLE WITH PARKINSON’S DISEASE

Abstract Ref: 
0073

Siobhan Fox1, Atheerah Azman1, Mary J Foley2, Orna O’Toole3, Suzanne Timmons1
1Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, Cork,
Ireland
2Assessment and Treatment Centre, St Finbarr’s Hospital, Cork, Ireland
3Mercy University Hospital, Cork, Ireland

Background: In advanced disease, people with Parkinson’s disease (PD) experience
many disabling symptoms such as inability to perform activities of daily living,
reduced speech/interaction, hallucinations, and poor sleeping, which in addition to
the effects on the person, often impact greatly on their family carer. Caring for
someone with a long-term progressive illness may cause anticipatory grief, i.e. grief
experienced before a bereavement. This has been widely studied in illnesses such as
dementia and cancer, but less so in relation to PD. The study aims were: 1) To demonstrate
the occurrence of anticipatory grief as experienced by carers of people
with PD; 2) To explore how this grief relates to caregiver burden and caregiver
depression.

Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages
3–5) were invited to complete a survey, including demographic questions about the person
with PD and themselves, and three questionnaires: Zarit burden Interview (ZBI); 15-
item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS).

Results: Features of anticipatory grief were universally experienced by carers of people
with PD. Carers experiencing higher anticipatory grief scores tended to be caring for a
person with PD with memory problems, and with poorer carer-rated health. Compared
to the results of the GDS, carers under-reported depression when asked directly. Results
of the ZBI showed the majority of carers had a high care burden index. However, many
positive aspects to caring were also apparent.

Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well
as depression and a high caring burden. To improve bereavement symptoms, focus
should include the period both before and after the death of a loved one. Healthcare providers
should always pay attention to PD carers’ psychological wellbeing as carers may
under-report their depression.