Objective: To evaluate the extent of carer strain in newly diagnosed Parkinson’s disease (PD) compared with that in long-standing PD, to inform development of carer-support services within our patient pathways.

Background: There is little provision for the carers of people with PD (PwP), leaving carers feeling anxious, isolated and unassisted. Resultant carer strain increases risk for PwP and potential for hospitalisation and institutional care. We are keen to evaluate the level of carer strain and impact on quality of life in order to inform the need for and development of a carer-support service within both our newly-diagnosed patient and complex disease pathways.

Methods: 20 Carers of PwP diagnosed within the last 12-18 months and 20 carers of PwP diagnosed for more than 5 years will be invited to participate in telephone interviews. The interviews will consist of open-ended questions to evaluate the scope of care provided as well as two measures: the Parkinson’s Disease Questionnaire – Carer (PDQ-C) and the Parkinson’s Disease Caregiver Burden Questionnaire (PDCB-Q) to evaluate carer quality of life and caregiving burden respectively.

Results: This project is currently at the data collection stage. The results will demonstrate the extent of carer burden in both long-standing and newly diagnosed PD, and evaluate the impact of this on carer quality of life.  

Conclusions: The findings will enable us to provide a rationale for developing carer support services within both our new-diagnosis and complex disease pathways. We plan to incorporate elements of the evaluation into routine service to identify those carers potentially at risk of strain and resultant reduction in quality of life.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/assessing-the-extent-of-carer-strain-in-parkinsons-disease/