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Survey Examines Social Support in Parkinson’s Disease from the Patient’s Perspective

KINGSTON, N.J., May 15, 2017/ -- The Parkinson Alliance conducted its 26th survey-based research, entitled Social Support and Parkinson’s Disease: The Patient’s Perspective. Individuals with Parkinson’s disease (PD) are confronted with debilitating symptoms, commonly inclusive of progressive physical, cognitive, and psychiatric symptoms. For many who are managing their symptoms day-by-day, social support is not only an aid to physical and psychological comfort, over time it becomes a necessity to manage well-being. Social support may be a predictor of successful adaptation and general psychological well-being for individuals with PD. Although our understanding about the importance of social support for individuals with PD continues to increase, there remains limited understanding about how patients perceive it. This survey report provides a better understanding about the complex topic of social support and includes recommendations for individuals with PD.

Data was gathered from 1,421 individuals with PD. Many participants in this survey indicated that they have strong support systems, inclusive of family, friends, significant others, the medical community, and the PD community. Despite strong support systems for many participants, PD has resulted in increased strain on family and care providers for 40% of the participants. Forty-nine percent of the participants reported moderately to extremely reduced access to support, resulting in changes in relationships. Symptoms have adversely impacted the quality of support from others for 77% of the participants. Fatigue, motor symptoms, speech disturbance, and cognitive and emotional disturbance were the most highly reported barriers to having a strong support system.

“Increased attention towards patients and their support system over the course of PD is needed. Early education about the importance and establishment of social support systems, may prove advantageous in the preparation for challenges that are faced in the advanced stages of PD. Perceived adequate social support may be a buffer, in part, for psychological distress,” comments Jeffrey Wertheimer, Ph.D., ABPP-CN, clinical neuropsychologist and Chief Research Consultant for The Parkinson Alliance. General recommendations for patients pertaining to social support and PD are discussed in the report.

Our report is available for download at


About The Parkinson Alliance
The Parkinson Alliance is a national non-profit organization dedicated to raising funds for Parkinson’s research and improving the quality of life in the DBS community.  After undergoing bi-lateral DBS in 2000, Margaret Tuchman, President of PA, founded to keep the community informed.

Carol Walton
The Parkinson Alliance