Significant Impacts on Sleep Reported by People with Parkinson Disease and their Caregivers

Almost everybody (96%) with Parkinson disease (PD) who responded to a survey conducted by PD Avengers (Vancouver, British Columbia, Canada) in conjunction with AbbVie (North Chicago, IL) reported that the condition affects their sleep quality. Additionally, 88% of caregivers of people with PD (PWP) who responded to the survey reported that they experience sleep disturbances due to their partners’ condition, with impacts ranging from “moderate” to “severe”.

The “Surveying Late Evening Effects of Parkinson’s (SLEEP)” Survey took place from March 15 to May 15, 2024, receiving responses from 1248 PWPs and 286 caregivers across 27 countries.

PWP who responded reported experiencing an average of 2.75 sleep disruptions and 5.6 PD symptoms per night. The 5 most common reported symptoms were:

• Frequent awakenings (53%)
• Insomnia (50%)
• Bradykinesia (41%)
• Rigidity (38%)
• Nocturia (38%)
• Difficulty turning over in bed (65%)

Of respondents identified as having advanced PD, 84% reported difficulty turning over in bed. Additionally, male respondents with PD reported higher instances of nocturia (43%), drooling (30%), and rapid eye movement (REM) sleep behavior disorder (28%), while female respondents more commonly reported insomnia (55%), joint stiffness (27%), and excessive sweating (28%).

In addition to reporting sleep disturbances, caregiver respondents experienced significant emotional burdens (40%), sleep disruptions to assist their care recipient with movement or medication (34%), and a feeling of constant concern for their care recipient’s wellbeing. PWP reported that they feel their nighttime symptoms impact their caregiver emotionally (44%) and disrupt their caregiver’s sleep and physical wellbeing (36%).

“The nighttime struggles of PWPs and their caregivers are a silent crisis that demands attention,” said Larry Gifford, President and Co-Founder of PD Avengers. “It is not just about acknowledging these challenges but taking actionable steps to address them. Our commitment to ending Parkinson’s disease must be unwavering and all-encompassing, embracing every hour of the day and night.”

Only 20% of respondents with PD received a diagnosis for a sleep disorder, and almost 30% reported that their health care provider (HCP) did engage in discussions about sleep. Sleep disorder diagnoses were more common for North American respondents (24%) compared with those in Europe (13%).

PD Avengers is a patient-led organization dedicated to ending PD by raising awareness of the condition and supporting research efforts.