A new worldwide survey about Parkinson’s sleep issues has highlighted the significant impact of nighttime symptoms on people with Parkinson’s and their caregivers.
The PD Avengers, a global Parkinson’s advocacy group, conducted their Surveying Late Evening Effects of Parkinson’s (SLEEP) survey in collaboration with pharmaceutical company AbbVie, and the results revealed a staggering 96% of respondents reported that Parkinson’s affects their sleep quality.
Running from March to May 2024, the survey received over 1,500 responses from 27 different countries, with 80% of respondents being people with Parkinson’s and the remaining 20% Parkinson’s caregivers.
The five most common Parkinson’s sleep issues reported in the survey were:
- Frequent awakenings (53%)
- Insomnia (50%)
- Bradykinesia, or slowness of movement (41%)
- Rigidity or stiffness (38%)
- Nocturia, or needing to get out of bed to urinate too frequently (38%)
Movement difficulties were particularly widely reported among Parkinson’s sleep issues, with 65% of respondents with the condition saying they found it difficult to turn over in bed at night. For people in the advanced stages of Parkinson’s, this figure rose to 84%.
And while men suffered more with nocturia and drooling, women more frequently reported issues with insomnia and joint stiffness.
The impact on caregivers was also clear, with 88% of those responding to this survey reporting some level of sleep disruption due to their partner’s Parkinson’s. Four in ten caregivers experience significant emotional burdens, while a third report significant sleep disruptions to assist with movement or medication.
Despite the survey revealing a clear and significant impact of nighttime symptoms on people with Parkinson’s, nearly a third of people with Parkinson’s reported their healthcare professionals did not engage in discussions about sleep, and only 20% have received a diagnosis for a sleep disorder. In Europe, the figure for people receiving a sleep disorder diagnosis comes down to just 13%.
PD Avengers President, Larry Gifford, said:
“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.”
Indeed, PD Avengers has also recommended five specific actions to address Parkinson’s sleep issues:
- Improve communication about sleep issues between people with Parkinson’s and their healthcare professionals
- Support caregivers with things like respite care, support groups, and counselling services
- Promote the rapid adoption of assistive devices that enable people with Parkinson’s to manage nighttime symptoms
independently, reducing caregiver intervention and improving sleep quality. - Drive education and awareness among healthcare providers about the critical importance of diagnosing and managing sleep disorders in Parkinson’s.
- Advocate for policy change, such as flexible work arrangements and financial assistance programs for caregivers who are financially strained due to their responsibilities.
Update 9 July: PD Avengers hosted a webinar about the sleep survey results on Monday 8th July over Zoom – you can view the recording here.
Read the sleep survey results in full, and find more advice about Parkinson’s sleep issues on our Living Well pages
