Objective:
The aim of the current study was to measure the correlation between the understanding of Parkinson’s disease (PD) and the burden of care among caregivers.
Methods:
This was an observational cross-sectional study conducted among Parkinson’s disease caregivers in Saudi Arabia. A self- administered questionnaire was used to collect the data. The questionnaire consisted of three parts; socio-demographic factors, questions related to the quality of life of the caregivers, and questions to assess the understanding of the disease among the caregivers. To assess the quality of life, the scale of quality of life of caregivers (SQLC) was used.
Results:
A total of 492 caregivers of PD patients participated in the study. Majority of caregivers (38.8%, 191) felt physically capable of helping the patient with activities of daily living, such as toileting, dressing, showering, bathing, and lifting. However, a significant proportion of caregivers reported experiencing negative impacts on their quality of life, including feeling annoyed or frustrated because their sleep was disturbed by the patient at night (29.3%, 144), feeling physically injured as a result of caring for the patient (33.7%, 166), and having trouble coping with the patient's compulsive behaviors (such as gambling or sexual hyperactivity) (29.1%, 143).
Conclusion:
Parkinson's disease patients' caregivers might endure emotional and physical strain, disturbed sleep, and irritation. However, caregivers might also experience good effects, such as a continuous friendship with the patient and the capacity to make future plans and achieve their objectives.
Key words: Quality of life, Parkinson disease, caregivers, neurodegenerative diseases, Saudi Arabia.
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