Objective: To show the perception of people with PD and their care partner about the more disturbing alteration associated to PD among the members of AMPARO network.

Background: Although the motor symptoms are the main feature of Parkinson’s disease (PD), currently it is well known that the several other cognitive, emotional and autonomic alterations are part of disease. However, the perception about the impact of this alterations on the quality of life according to people living with PD and their care partners has been little studied.

Methods: 120 PPD living in Brazil, mean age of 61.3 years, 80 care partners. After becoming a member of AMPARO by internet (https://amparo.numec.prp.usp.br/), the members were invited to answer a survey in order to share their experience, challenges and concerns with PD. The surveys were elaborated by an interprofessional team specialized in movement disorders based on clinical experience and scientific evidences in PD. The surveys consisted of several multiple-choice questions. Among the questions, two of them asked about the main alterations associated to PD experienced by them and about more disturbing of them in their daily living activities.

Results: The analysis of the results showed that, according to people with PD, the most disturbing symptoms associated to PD were slowness in movement / muscle rigidity (36.59%), tremor (12.20%), lack of balance (10.98%), while the most distressing alteration in daily living were maintain quality sleep (31.71%), community walking and (28.05%) wear clothes and footwear (17.07%). On the other hand, according to the care partner, the more challenger task is offer the emotional support for people with PD (49.28%), followed by help during the shower (10.14%) and to manage the medication schedule (5.80%).

Conclusions: Among the 14 symptoms experienced by people with PD, although the four more disturbing of them were associated to motor symptoms, several non-motor symptoms were also cited. More interesting, the most distressing of them was sleep disfunction according to people with PD, and the emotional alterations according to care partners. These results reinforce the crucial role of interprofessional care to improve the quality of life for people with PD and their care partners.

References: Cohen E, Hagestuen R, González-Ramos G, Cohen H, Bassich C, Book E, Morgan J. (2015). Interprofessional Education increases knowledge, promotes team building, and changes practice in the care of Parkinson’s disease. Parkinsonism and Related Disorders, 22, 21-27.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/motor-limitations-are-the-most-distressing-alterations-for-people-living-with-parkinsons-disease/