Who cares for the carers? Everyday insights into Parkinson’s disease

Twentythree percent of people who care for others with Parkinson’s disease (PD) report that they feel the task imposes a moderate to severe burden, and a further 34% consider the burden mild to moderate, according to data from the pan-European PRISM study presented at EAN 2020 Virtual by Eduardo Tolosa (University of Barcelona, Spain). 

Over 70% of carers say that the caring role has at least some impact on their relationship with the person cared for, and in almost half of the impact is moderate to extreme.

Burden rose linearly with hours spent in the caring role

Can burden be reduced?

Data come from 256 respondents to the online survey carried out in 2019 as part of the PRISM study which investigated the real-world impact of the disease.

Eighty-two percent of carers were the partner or spouse of the person with PD; 65% were women; and on average they spent 23 hours each week as carers. Other family members provided support in 30% of cases, friends in 13%, and paid caregivers in 15%.

The wellbeing of their carers is important to the wellbeing of people with PD, said Professor Tolosa. It is helpful to know factors that increase the burden felt by carers so that we can change those that can be modified.

Prime among them is number of hours worked. The burden felt rose linearly, being least among carers who spent less than ten hours per week with this responsibility, and highest among those whose hours spent caring exceeded thirty.

Pathological processes in PD are shared with diabetes

Burden rose significantly with increasing age of the person needing care, with worse mobility (reflected in higher PDQ-39 score), and with the presence of more non-motor symptoms.

Women carers reported a greater burden than male carers. Being a sibling of the person with PD also increased the burden felt.