Search Here

A recent survey conducted by the PD Avengers in partnership with AbbVie has unveiled the extensive toll Parkinson's disease takes on sleep quality, affecting a staggering 96% of respondents worldwide.

The Surveying Late Evening Effects of Parkinson's (SLEEP) study, conducted from March to May 2024, gathered insights from over 1,500 participants across 27 countries, including both individuals with Parkinson's and their caregivers.

Among those surveyed, 80% were Parkinson's patients, while the remaining 20% were caregivers. The survey identified several prevalent sleep issues among patients:

• More than half reported frequent awakenings (53%).
• Half experienced insomnia (50%).
• 41% cited bradykinesia (slowness of movement) as a sleep challenge.
• Rigidity or stiffness affected 38% of respondents.
• Nocturia, the need to urinate frequently at night, also affected 38% of participants.

Movement difficulties during sleep were particularly pronounced, with 65% of patients finding it challenging to turn over in bed, a figure that rose to 84% in advanced stages of the disease, Parkinson's Europe reported. Gender differences were noted, with men more affected by nocturia and drooling, while women reported higher incidences of insomnia and joint stiffness.

The impact on caregivers was equally significant, with 88% reporting sleep disruptions due to their partner's Parkinson's. Emotional strain was noted by 40% of caregivers, and a third experienced sleep disturbances related to assisting with patient movement or medication.

Despite the profound impact on daily life, the survey highlighted notable gaps in healthcare engagement. Nearly one-third of patients reported no discussions with healthcare professionals about their sleep issues, and only 20% had received a formal diagnosis of a sleep disorder. In Europe, this diagnosis rate dropped to just 13%.

Larry Gifford, President of PD Avengers, emphasized the urgency of addressing these challenges, stating, "The nighttime struggles of people with Parkinson's 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."

To address these issues, PD Avengers has proposed several recommendations:

• Educate healthcare providers about the importance of diagnosing and managing sleep disorders in Parkinson's patients.
• Promote the use of assistive devices to empower patients to manage nighttime symptoms independently.
• Provide support for caregivers through respite care, support groups, and counseling services.
• Advocate for policy changes such as flexible work arrangements and financial assistance for caregivers.
• Improve communication between patients and healthcare providers regarding sleep problems.