A new survey by the PD Avengers – a global alliance to end Parkinson’s disease –   confirms that Parkinson’s disease significantly disrupts sleep for patients and caregivers and uncovers key areas for improving care.

The ‘Surveying Late Evening Effects of Parkinson’s’ (SLEEP) survey, conducted from March 15 to May 15 in collaboration with pharmaceutical company AbbVie, sheds light on the significant impact of nighttime symptoms on people with Parkinson’s and their caregivers.

Responses from over 1,248 people with Parkinson’s and 286 caregivers across 27 countries, revealed the following key findings.

Nighttime Symptoms Among People with Parkinson’s:

• Prevalence: 96% of respondents reported that Parkinson’ affects their sleep quality, with an average of 2.75 sleep disruptions per night.
• Symptom Burden: On average, people with Parkinson’s reported dealing with nearly six different Parkinson’s symptoms (5.6) each night.
• Common Symptoms: The five most common reported symptoms during sleep were: frequent awakenings (53%), insomnia (50%), bradykinesia (41%), rigidity (38%), and nocturia – frequent waking to urinate at night (38%).
• Difficulty with Movement: 65% of people with Parkinson’s reported difficulty turning over in bed at night and this increased to 84% for those who identified as having advanced Parkinson’s.
• Gender Differences: Men reported higher instances of nocturia (43%), drooling (30%), and REM Sleep Behaviour Disorder (28%), while women were more affected by insomnia (55%), joint stiffness (27%), and excessive sweating (28%).
• Discussions on Sleep with Healthcare Providers: Nearly 30% of people with Parkinson’s reported their healthcare provider did not engage in discussions about sleep and only 20% have received a diagnosis for a sleep disorder.
• Regional Differences: North American respondents are more likely to receive a sleep disorder diagnosis (24%) compared to their European counterparts (13%).
• Impact on Caregivers:  A significant majority (88%) of caregivers experience some level of sleep disruption due to their partner’s Parkinson’s disease, ranging from moderate to severe impacts.

Emotional and Physical Strain for People with Parkinson’s and Care Partner Relationship:

• 44% of people with Parkinson’s report that nighttime symptoms significantly impact their care partner emotionally, while 36% of people with Parkinson’s report that their symptoms disrupt their care partner’s sleep and physical wellbeing.
• 40% of caregivers experience significant emotional burden, and 34% report significant sleep disruptions to assist with movement or medication.
• Additionally, 32% feel constant concern for their care recipient’s well-being, leading to heightened vigilance and difficulty relaxing.

“The nighttime struggles of people with Parkinson’s and their caregivers are a silent crisis that demands attention. It’s 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,” said Larry Gifford, President and Co-founder of PD Avengers.