Today, the PD Avengers, a Global Alliance to End Parkinson’s Disease released groundbreaking data from their Global “Surveying Late Evening Effects of Parkinson’s (SLEEP) Survey.


The survey, conducted from March 15th to May 15th, 2024, in collaboration with AbbVie, sheds light on the significant impact of nighttime symptoms on people with Parkinson’s (PWPs) and their caregivers.

Responses from over 1,248 PWPs and 286 caregivers across 27 countries, revealed the following key findings:

Nighttime Symptoms Among PWPs:

Prevalence: 96% of respondents reported that Parkinson’s affects their sleep quality, with an average of 2.75 sleep disruptions per night.

Symptom Burden: On average, PWPs 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 (38%).Difficulty with Movement: 65% of PWPs reported difficulty turning over in bed at night and this increased to 84% for those who identified as having advanced PD.

Gender Differences: Men reported higher instances of nocturia (43%), drooling (30%), and REM Sleep Behavior Disorder (28%), while women were more affected by insomnia (55%), joint stiffness (27%), and excessive sweating (28%).

Healthcare Practitioners Engagement:

Discussions on Sleep with Healthcare Providers: Nearly 30% of PWPs reported their HCP 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:

Daily Functioning: 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 the PWP and Care Partner Relationship:

44% of PWPs report that nighttime symptoms significantly impact their care partner emotionally, while 36% of PWPs report that their
symptoms disrupt their care partners’ sleep and physical well-being.

40% of caregivers experience significant emotional burdens, 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 PWPs and their caregivers are a silent crisis that demands attention. 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.” – Larry Gifford, President and Cofounder, PD Avengers.

Parkinson’s disease (PD) is the fastest-growing brain disorder in the world and impacts 11.8 million people. While PD is often characterized by motor symptoms such as tremors, muscle rigidity, and difficulty with movement, it also presents over 40 potential symptoms 4 with sleep, pain, gut health, and constipation. Many of these symptoms are hidden from others including anxiety, depression and apathy.

To address these issues, the PD Avengers recommends the following actions:

  1. Improve Communication Between PWPs and HCPs: Encourage more proactive discussions about sleep issues to ensure that PWPs
    receive comprehensive care.

  2. Support Caregivers: Establish respite care, support groups, and counselling services immediately to alleviate the immense
    emotional and physical strain on caregivers. They need relief and support, not just acknowledgment.

  3. Deploy Assistive Technologies: Promote the rapid adoption of assistive devices that enable PWPs to manage nighttime symptoms
    independently, reducing caregiver intervention and improving sleep quality.

  4. Drive Education and Awareness: Increase education efforts among healthcare providers about the critical importance of
    diagnosing and managing sleep disorders in Parkinson’s. Equip PWPs and caregivers with the knowledge to advocate for proper care.

  5. Advocate for Policy Change: Push for flexible work arrangements and financial assistance programs for caregivers who are financially strained due to their responsibilities. Policy change must support the well-being of both PWPs and their caregivers.

Find more data and results on the 2024 SLEEP Survey at http://www.pdavengers.com/sleepsurvey.

CONTACT

Larry Gifford, President and Cofounder PD Avengers | Global Alliance to End Parkinson’s Disease www.pdavengers.com/sleepsurvey

@PDAvengers on Facebook, X, Instagram, LinkedIn, YouTube, and TikTok

PD Avengers

The PD Avengers is a global alliance of more than 8,300 people and 150 partner organizations in 103 countries affected by Parkinson’s Disease (PD), including patients, caregivers, researchers, advocates, and healthcare professionals, who are united in their mission to end Parkinson’s. Through three pillars of wellness, advocacy and research, PD Avengers is adding urgency to the cause to raise awareness, drive research, and advocate for better treatments and care. It uses various initiatives, campaigns and events to amplify the voices of those impacted by Parkinson’s and advocate for positive change in policies and practices related to PD.

AbbVie in Neuroscience

At AbbVie, our commitment to preserving the personhood of people around the world living with neurological and psychiatric disorders is unwavering. With more than three decades of experience in neuroscience, we are providing meaningful treatment options today and advancing innovation for the future. AbbVie’s Neuroscience portfolio consists of approved treatments in neurological conditions, including migraine, movement disorders, Parkinson’s disease, and psychiatric disorders, along with a robust pipeline of transformative therapies. We have made a strong investment in research and are committed to building a deeper understanding of neurological and psychiatric disorders. Every challenge makes us more determined and drives us to discover and deliver advancements for those impacted by these conditions, their care partners, and clinicians. For more information, visit www.abbvie.com.
“Our commitment to ending Parkinson’s disease must be unwavering and all-encompassing, embracing every hour of the day and night.”
— Larry Gifford, President , PD Avengers

Wake-Up Call: New Patient Survey Reveals Parkinson’s Significantly Disrupts Sleep

PD Avengers SLEEP Survey uncovers key areas for improving care for those living with Parkinson’s and their caregivers

(Vancouver, BC, Canada | June 24, 2024)

OPEN SOURCE SURVEY RESULTS

EXTRA RESOURCES

ARTICLE: Decoding Parkinson’s After Dark

ARTICLE: Sleepiness and Fatigue in Parkinson’s - Davis Phinney Foundation

ARTICLE: Parkinson's Disease Sleep Problems (clevelandclinic.org)

ARTICLE: Tips For Conversing with Someone Living with Parkinson’s

ARTICLE: 13 Pieces to the Parkinson’s Puzzle

Article: Did You Know THIS About PD?

Article: What to Say and What to Avoid

Article: 21 Parkinson’s Symptoms and Reactions to Keep You Up At Night