Results underscore need for greater awareness of non-movementsymptoms this Parkinson’s Disease Awareness Month
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Key Findings: Non-Movement Symptoms Decrease Quality of Life
90percent of respondents reported that they or their loved one withParkinson’s experienced non-movement symptoms associated with PD,including sleep problems (84 percent), cognitive challenges (75percent), anxiety (65 percent), depression (55 percent), hallucinations(41 percent) and delusions (24 percent).
- Of those who experienced non-movement symptoms:
- 84 percent agreed that non-movement symptoms had a negative impacton quality of life.
- 49 percent rated them as more challenging or much more challengingto live with than movement symptoms.
- Both people with PD and PD care partners reported thatnon-movement symptoms negatively impacted their ability to sleep(84 percent), plan for future events (76 percent), socialize (71percent), make plans with family and friends (70 percent), beintimate with their partner (68 percent), complete householdchores (68 percent) or run errands (67 percent).
“This survey clearly shows that non-movement symptoms of Parkinson’sdisease make it difficult for people with Parkinson’s and their carepartners to participate in activities most of us take for granted –running errands, going to the movies, eating out or simply cooking andcleaning,” said
Care Partners More Likely to Recognize Presence of Non-MovementSymptoms than Persons with PD
The survey found thatnon-movement symptoms were more frequently recognized by care partnersthan by people with Parkinson’s. Most notably, care partners were two tofour times more likely than people with PD to recognize the presence ofhallucinations (51 percent of care partners as compared to 23 percent ofpeople with PD) and delusions (32 percent as compared to 8 percent).These symptoms often go unreported to health care providers, makingnon-movement symptoms difficult to diagnose and treat.iiMedical literature suggests that only 10 to 20 percent of people withParkinson’s or their caregivers report hallucinations and delusions totheir doctor, possibly due to embarrassment or not understanding thatthe symptoms are associated with PD and the majority of the discussionis focused on motor symptoms.ii,iii,iv,v
Care partners were also more likely than people with Parkinson’s torecognize their loved one’s cognitive challenges (84 percent of carepartners as compared to 62 percent of people with PD), anxiety (69percent of care partners as compared to 57 percent of people with PD)and depression (59 percent of care partners as compared to 50 percent ofpeople with PD).
“Parkinson’s disease changes how both people with PD and care partnersthink about their future and cope with day-to-day living,” said Jones.“Care partners are particularly attuned to how the disease isprogressing in their loved one, which is why PMDAlliance added neweducational resources to our website about the onset and impact ofnon-movement symptoms of PD. We want to encourage people to reportsymptoms to their health care providers, seek support and participate inthe community. This spring, we’re also hosting several Learn, Live,Connect educational conferences across the country where people canlearn more about Parkinson’s disease and its many symptoms.”
“We are honored to partner with PMDAlliance to highlight the impact ofnon-movement symptoms on both people with Parkinson’s and their carepartners,” said
For more information about PMDAlliance and non-movement symptoms relatedto PD, please visit: https://www.pmdalliance.org/understanding-non-motor-symptoms/.
Survey Methodology
The survey was conducted online with thePMDAlliance membership from
About PMDAlliance
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i Parkinson's Foundation – Causes & Statistics. Available at http://parkinson.org/Understanding-Parkinsons/Causes-and-Statistics.
iiChadhuri KR, Prieto-Jurcynska C, Naidu Y, et al. Thenondeclaration of nonmotor symptoms of Parkinson’s disease to healthcare professionals: an international study using the nonmotor symptomsquestionnaire. Mov Disord. 2010;25(6):704-709.
iii FenelonG, Alves G. Epidemiology of psychosis in Parkinson's disease. JNeurol Sci. 2010;12.
iv Fenelon G, Mahieux F,et al. Hallucinations in Parkinson's disease. Prevalence, phenomenologyand risk factors. Brain. 2000;736-738.
v Goetz,Christopher, et al. The malignant course of ‘benign hallucinations’ inParkinson disease. Arch Neurol. 2006;63(5)713-716.
Source:
Media Contacts:
PMDAlliance
Andrea Merriam
(800)256-0966
andrea@PMDAlliance.org
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TaftCommunications
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bob@taftcommunications.com