Objective: We performed a scoping review to describe caregiver burden in Parkinson disease (PD) and build on the evidence provided by Mosely at al. [1] We describe evidence on PD caregiver burden related to disease-related factors, caregiver-related factors, caregiver perceptions and experiences of stress and burden, and interventions to reduce caregiver burden.

Background: PD is the second most common neurodegenerative disorder and affects over 6 million people worldwide. [2] Disease progression, worsening symptoms, and patient disability are associated with high rates of caregiver distress, burden, and adverse health outcomes for patients and caregivers. [3] The COVID-19 pandemic has increased rates of caregiver burden in PD. Despite growing interest and research in this area, there has not been a comprehensive review of this literature for over 5 years.

Method: The study team searched 4 databases (PubMed, PsychINFO, EMBASE, and CINAHL) for peer-reviewed research articles published between January 1, 2017, and April 1, 2022. Of 576 studies screened, 112 studies were included in this review.

Results: Disease-Related Predictors of Burden: Caregiver burden is associated with greater PD motor symptoms, specifically akinesia, rigidity, and PD “off” time; and non-motor symptoms such as cognitive impairment, neuropsychiatric symptoms, and poor sleep.  

Caregiver-Related Predictors of Burden: Gender (female), relationship (spouse), and number of caregiving hours per day contribute to caregiver burden and poor caregiver quality of life. Caregiving is associated with increased rates of psychiatric and medical comorbidities, and reduced relationship satisfaction. 

Caregiver Perceptions and Experiences of Stress and Burden: Qualitative studies of caregivers’ experiences report decreased self-care, increased social isolation, depression, anxiety, guilt, frustration, and sadness. Role changes impact relationships between patients and caregivers.  

Interventions: There are few well-controlled intervention studies. Small studies and randomized trials suggest that cognitive or group therapies, workshops, and PD-related classes may reduce caregiver burden.

Conclusion: This review lays a foundation for future efforts to identify and ease caregiver burden in PD. The risk factors described may help guide clinician screening efforts and future interventions to reduce caregiver burden.

References: 1. Mosley PE, Moodie R, Dissanayaka N. Caregiver Burden in Parkinson Disease: A Critical Review of Recent Literature. J Geriatr Psychiatry Neurol. 2017;30(5):235-252. doi:10.1177/0891988717720302
2. Dorsey ER, Bloem BR. The Parkinson Pandemic-A Call to Action. JAMA Neurol. 2018;75(1):9-10. doi:10.1001/jamaneurol.2017.3299
3. Martínez-Martín P, Forjaz MJ, Frades-Payo B, et al. Caregiver burden in Parkinson’s disease. Mov Disord. 2007;22(7):924-931; quiz 1060. doi:10.1002/mds.21355

Complete list of references can be provided on request.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/caregiver-burden-in-parkinson-disease-an-updated-scoping-review/