Results underscore need for greater awareness of non-movement symptoms this Parkinson’s Disease Awareness Month
As part of Parkinson’s Disease Awareness Month, the Parkinson & Movement Disorder Alliance (PMDAlliance) and ACADIA Pharmaceuticals Inc. (Nasdaq: ACAD) today announced the results of a survey on the impact of non-movement symptoms on people with Parkinson’s disease (PD), a progressive, neurodegenerative disorder affecting over one million Americans.i More than 650 people, including people with Parkinson’s and care partners of people with Parkinson’s, participated in the survey.
Key Findings: Non-Movement Symptoms Decrease Quality of Life
90 percent of respondents reported that they or their loved one with Parkinson’s experienced non-movement symptoms associated with PD, including sleep problems (84 percent), cognitive challenges (75 percent), 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 impact on quality of life.
- 49 percent rated them as more challenging or much more challenging to live with than movement symptoms.
- Both people with PD and PD care partners reported that non-movement symptoms negatively impacted their ability to sleep (84 percent), plan for future events (76 percent), socialize (71 percent), make plans with family and friends (70 percent), be intimate with their partner (68 percent), complete household chores (68 percent) or run errands (67 percent).
“This survey clearly shows that non-movement symptoms of Parkinson’s disease make it difficult for people with Parkinson’s and their care partners to participate in activities most of us take for granted – running errands, going to the movies, eating out or simply cooking and cleaning,” said Sarah Jones, MPA, MS, CEO of PMDAlliance. “We urge the entire Parkinson’s community – from the people with Parkinson’s and care partners, to health care professionals and support groups – to continue initiating conversations about Parkinson’s symptoms, especially the non-movement ones that greatly impact day-to-day living.”
Care Partners More Likely to Recognize Presence of Non-Movement Symptoms than Persons with PD
The survey found that non-movement symptoms were more frequently recognized by care partners than by people with Parkinson’s. Most notably, care partners were two to four times more likely than people with PD to recognize the presence of hallucinations (51 percent of care partners as compared to 23 percent of people with PD) and delusions (32 percent as compared to 8 percent). These symptoms often go unreported to health care providers, making non-movement symptoms difficult to diagnose and treat.ii Medical literature suggests that only 10 to 20 percent of people with Parkinson’s or their caregivers report hallucinations and delusions to their doctor, possibly due to embarrassment or not understanding that the symptoms are associated with PD and the majority of the discussion is focused on motor symptoms.ii,iii,iv,v
Care partners were also more likely than people with Parkinson’s to recognize their loved one’s cognitive challenges (84 percent of care partners as compared to 62 percent of people with PD), anxiety (69 percent of care partners as compared to 57 percent of people with PD) and depression (59 percent of care partners as compared to 50 percent of people with PD).
“Parkinson’s disease changes how both people with PD and care partners think about their future and cope with day-to-day living,” said Jones. “Care partners are particularly attuned to how the disease is progressing in their loved one, which is why PMDAlliance added new educational resources to our website about the onset and impact of non-movement symptoms of PD. We want to encourage people to report symptoms to their health care providers, seek support and participate in the community. This spring, we’re also hosting several Learn, Live, Connect educational conferences across the country where people can learn more about Parkinson’s disease and its many symptoms.”
“We are honored to partner with PMDAlliance to highlight the impact of non-movement symptoms on both people with Parkinson’s and their care partners,” said Doral Fredericks, PharmD, Vice President of Medical Affairs, ACADIA Pharmaceuticals. “We encourage people with Parkinson’s and caregivers to join the effort to raise awareness about this important aspect of Parkinson’s disease.”
For more information about PMDAlliance and non-movement symptoms related to PD, please visit: https://www.pmdalliance.org/understanding-non-motor-symptoms/.
The survey was conducted online with the PMDAlliance membership from March 19-March 31, 2018. A separate set of questions was asked to respondents who indicated that they or their loved one had experienced non-movement symptoms versus those who did not report the presence of non-movement symptoms. Seven hundred people started the survey, comprising 377 care partners of persons with PD, 286 people with PD, 10 non-care partners/family members of people with PD, and 27 others, with approximately 650 who moved on to the subsequent questions about non-movement related symptoms. Nearly 600 respondents completed the survey in full. As not all respondents answered every question, sample sizes may vary for each question. The survey was sponsored by ACADIA Pharmaceuticals Inc.
The Parkinson & Movement Disorder Alliance (PMDAlliance) provides opportunities to learn, live life more fully and connect with community every day. Throughout the U.S., this nonprofit organization supports people impacted by Parkinson’s disease and other movement disorders, as well as those who care about them, by offering a variety of live and online programs and events that focus on educating, enriching and enhancing daily life, and encouraging social and support connections. For more information, contact PMDAlliance at www.PMDAlliance.org; 800.256.0966; info@PMDAlliance.org; and PMDAlliance, PO Box 36233, Tucson AZ 85704.
About ACADIA Pharmaceuticals
ACADIA is a biopharmaceutical company focused on the development and commercialization of innovative medicines to address unmet medical needs in central nervous system disorders. ACADIA maintains a website at www.acadia-pharm.com to which we regularly post copies of our press releases as well as additional information and through which interested parties can subscribe to receive e-mail alerts.
i Parkinson’s Foundation – Causes & Statistics. Available at http://parkinson.org/Understanding-Parkinsons/Causes-and-Statistics.
ii Chadhuri KR, Prieto-Jurcynska C, Naidu Y, et al. The nondeclaration of nonmotor symptoms of Parkinson’s disease to health care professionals: an international study using the nonmotor symptoms questionnaire. Mov Disord. 2010;25(6):704-709.
iii Fenelon G, Alves G. Epidemiology of psychosis in Parkinson’s disease. J Neurol Sci. 2010;12.
iv Fenelon G, Mahieux F, et al. Hallucinations in Parkinson’s disease. Prevalence, phenomenology and risk factors. Brain. 2000;736-738.
v Goetz, Christopher, et al. The malignant course of ‘benign hallucinations’ in Parkinson disease. Arch Neurol. 2006;63(5)713-716.