Objective: To study the quality of life, caregiver burden and caregiving needs among persons with Parkinson’s disease (PWPD) and their primary caregivers in a low resource healthcare setting.

Background: Parkinson’s disease (PD) is the second most common neurodegenerative disorder, affecting approximately 1 percent of the population older than 50 years. Caregiving of the patients with  especially during the advanced stages can be quite a difficult task. A double impact of the illness is operative in PD; care is needed for physical limitations of the patient as well as the inevitable cognitive and psychiatric complications, which can begin early in the disease.

Method: Cross-sectional, descriptive study was conducted among forty five patient-caregiver dyads receiving treatment from a tertiary referral care teaching hospital for neuropsychiatric disorders in South India. The participants were interviewed between August 2019 to march 2020, and were assessed with Semi structured interview schedule, Multidimensional scale of Perceived Social support (MSPSS), Parkinson’s Disease Quality of Life Questionnaire (PDQL) and Zarit Burden Interview. Statistical Analysis done through IBM-SPSS version 20.

Results: The mean age of the PWPD was 58.71 ± 9.89 years(range 31 – 74). The mean duration of illness was 4.09 years (range 1- 11). Results indicate moderate to better QoL (118.13 ± 18.7)  among the PWPD. Moderate to higher social support was reported among PWPD and they perceived better family support as compared to support from friends and significant others. The majority of caregivers reported mild to moderate level of burden on taking care of the patient. Perceived social support showed significant positive correlation (r=.296, p= .048) with PD QoL and the PD QoL was noticed to have significant negative correlation with caregiver burden (r = -.529, p = 0.00). Psychological, social and care needs were felt to be as important as the symptom control and disease management.

Conclusion: The study confirms that the severity of clinical features impacted the quality of life of the person with Parkinson’s disease and the variation the symptoms influenced the quality of life of the patients, which in turn affects the felt burden of caregivers. This highlights the need for culture specific multidisciplinary care team to address the above psychosocial issues as part of the intervention plan.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/quality-of-life-perceived-social-support-and-caregiver-burden-in-parkinsons-disease/