Contributory Factors to Caregiver Burden in Parkinson's Disease

Author:

Soares Gabriela M.1ORCID,Bouça‐Machado Raquel234ORCID,Abreu Daisy3ORCID,Ferreira Joauqim J.1234ORCID

Affiliation:

1. Faculdade de Medicina Universidade de Lisboa Lisbon Portugal

2. CNS‐Campus Neurológico Torres Vedras Portugal

3. Instituto de Medicina Molecular João Lobo Antunes, Faculdade de Medicina Universidade de Lisboa Lisbon Portugal

4. Laboratory of Clinical Pharmacology and Therapeutics, Faculdade de Medicina Universidade de Lisboa Lisbon Portugal

Abstract

ABSTRACTBackgroundAlthough there is growing recognition of the relevancy of informal caregivers there is scarce information on the contributory factors of caregiver burden in Parkinson's Disease (PD).ObjectiveTo identify the main associated factors to caregivers’ burden in people caring for a person with PD.MethodsWe analyzed the data set from a multinational online survey the Parkinson's real‐world impact assesSMent (PRISM) focusing on medication use, comorbidities, health‐related quality of life, relationship changes and the use of healthcare and supportive care resources by people with PD and their carers. Structured questionnaires including the Parkinson's disease quality of life questionnaire (PDQ‐39), non‐motor symptoms questionnaire (NMSQuest) and the Questionnaire for impulsive‐compulsive disorder in Parkinson's disease (QUIP) were applied. Caregiver burden was assessed by the Zarit Burden Interview (ZBI).ResultsIn a cohort of 245 dyads (patient and respective caregiver), caregivers reported a mild to moderate burden. Carers’ perception of PD impact in partnership, financial burden, hours of care, patient's age, hypersexuality and health‐related quality of life (HRQoL) were found to be significant contributory factors to caregiver burden. Taken together these variables explained 66.8% of the variance in the Interpretation of the ZBI total score.ConclusionsCaring for a person with PD entails substantial burden, particularly when the caregiver perceives greater changes in partnership dynamics, dedicates more time to caregiving tasks, has financial burden, and when the patient is older, reports worst HRQoL and has sexual compulsive urges.

Publisher

Wiley

Subject

Neurology (clinical),Neurology

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