Parkinson’s disease: when you sleep better, you feel better
Sleep is one of the pillars of health. However, sleep disturbances can be a common symptom in Parkinson’s, affecting up to 98% of patients.
Parkinson’s is a progressive disorder of the nervous system, which is characterised by both motor (movement) and non-motor-symptoms. Its cause is unknown, however, it results from damage to the nerve cells in areas of the brain that produce dopamine. Dopamine is the vital chemical messenger that initiates control of muscles and movement.
Sleep fragmentation in Parkinson’s is a common non-motor symptom and can precede the appearance of the first motor symptoms by up to a decade. The causes of broken sleep are varied and unique to the person experiencing them.
I think people are starting to see that sleep is one of the pillars of good health and just because you’ve been diagnosed with Parkinson’s, it doesn’t mean you’re not entitled to a decent night’s sleep.
The research journey
As someone who had always suffered from poor sleep, Dr Maria Pushpanathan from The University of Western Australia’s School of Psychological Science became passionate about helping others with sleep issues.
In 2009, whilst undertaking her Honours Degree, Maria’s research examined the link between sleep, memory and thinking in neurodegeneration. Her PhD, in 2016, focussed on Sleep Disruption and Cognitive Function in Parkinson’s and included comprehensive measures of sleep quality and quantity as well as tests of memory and thinking. Maria’s close interaction with participants and her previous work in aged care reinforced, first hand, the effects that poor sleep had on people.
Maria’s research was initially supported by Parkinson’s Western Australia. Parkinson’s WA is a not-for-profit organisation that has been providing home nursing services and guidance on treatment, exercise and community services to its members for over 30 years.
The research was later supported by ParkC, a collaboration between Curtin University, Edith Cowan University and UWA, that brings together not-for-profit community groups and multi-institutional academic staff interested in the field.
When you help a young researcher, they always carry a baton for that particular condition. That collaboration between universities and Parkinson’s Western Australia is part of who we are.
Research goals:
- to clarify the relationship between sleep issues and cognition in Parkinson’s
- advocate to practitioners the importance of treating sleep issues, using a personalised approach, in people with Parkinson’s
- to monitor how sleep disorders might evolve as Parkinson’s develops
Sleep and cognition
Sleep disturbance in PD was a common theme noted by Maria and her colleagues, including Professor Romola Bucks, UWA School of Psychological Science, when speaking with people in the Parkinson’s community. Many patients had been saying that they slept poorly and that their sleep was making their other symptoms worse.
When people are telling us – ‘I sleep poorly and it’s affecting my memory and my mood’ – we really need to listen to them, because they are the ones who are experiencing it.
The team found, however, that existing literature painted a mixed picture of the relationship between sleep problems and cognition in people with Parkinson’s.
Their 2016 study revealed:
The complicated relationships around Parkinson’s and sleep issues
- Sleep measures used in large-scale studies were not demonstrating clear relationships between sleep symptoms and the types of cognitive problems experienced.
- Patients with sleep problems had poorer memory and thinking skills; particularly planning, problem-solving and mental flexibility.
- Sufficient, good quality sleep at night had a significant positive impact on a person’s overall cognitive functioning.
- There were also effects of poor sleep on a range of cognitive functions specifically in the areas of:
- long term verbal memory, and
- executive function (thinking skills), such as ability to shift attention, update working memory, generativity (mental flexibility) and fluid reasoning (solving unfamiliar problems).
The results indicated that different types of sleep disorders in Parkinson’s are not currently being identified by practitioners. Despite this, the team have been excited by their findings. Many sleep problems are treatable, and when correctly diagnosed can lessen the impact of some symptoms. The types of sleep disturbances might include dystonia, pain, vivid dreams, urinary problems, sleep apnoea, and a breakthrough of the symptoms or a behavioural sleep disorder.
Finding a solution to the poor sleep experienced by people with Parkinson’s comes down to ‘what is the cause of their broken sleep?’. If we encourage people to talk about their symptoms, they actually then become more informed, just by sharing them and will learn to talk to their doctor about them.
Further funding is required for systematic research to find a solution that can have a positive health impact on people with Parkinson’s who have sleep issues.
The way we measure sleep matters
The Parkinson’s Disease Sleep Scale (PDSS) is commonly used by medical professionals and researchers to quantify a range of symptoms impacting sleep.
In their 2018 study which examined the large-scale use of PDSS, the team pioneered the use of a new, multidimensional approach to sleep analysis.
The statistical modelling was able to capture a range of experiences more accurately than the PDSS scale, which explores averages. The data from 166 participants clearly demonstrated that people with Parkinson’s each experienced different sleep and cognitive symptoms.
Consequently, the team have recommended the use of a multidimensional model for effectively screening patients and treating sleep disorders. They hope to refine the technique in the next year or two, dependent on funding.
Advocates for change
From their studies and from what is known about how the brain works, it is suspected that, by addressing specific sleep symptoms as early as possible, the development of inflammation in the brain might be limited, which might slow down the progression of Parkinson’s. Translating this new knowledge could have major clinical implications for how neurologists treat problematic sleep issues in their patients.
Maria and the team have received increasing radio and press since results of the studies were published and the conversation around sleep and Parkinson’s has begun to change.
The expected stages of progression in Parkinson’s can be prolonged with better sleep
In 2018, the team contributed to the Parliamentary Inquiry into Sleep Health Awareness in Australia as part of a multi-institutional submission initiated by the Australasian Sleep Association. Their contribution noted that there is a strong link between sleep and neurodegeneration and that targeted funding is required to further research.
Both Romola and Maria have also presented talks at Parkinson’s WA. Feedback from attendees has indicated that people are starting to expect a better level of care than is generally available. The team are now working with neurologists to promote routine sleep screening as a priority for people with Parkinson’s.
The research at UWA and particularly Maria’s 2009 study has been very instrumental in changing how we Parkinson’s nurses assess people for sleep disturbances. We have been guided in our line of questioning, again remembering that everyone is an individual.
Better sleep for people with Parkinson’s
For people who have Parkinson’s, there are clear health and wellbeing impacts associated with treatments that might prolong progression and improve their quality of life. Early intervention is critical.
The biggest predictor of people going into residential care with Parkinson’s is not their motor symptoms; it’s their cognitive and nighttime sleep symptoms. If research can offer neurologists a way to address these symptoms earlier, there is the potential for huge cost savings and economic benefits to the health system.
We would love to have enough evidence to help people sleep better so that; their Parkinson’s can be slowed; their symptoms managed; they sleep better at night; and, they have better days because their nights are better.
The research will ultimately deliver to people who have Parkinson’s in that it identifies that people with Parkinson’s require personalised medicine. Research in this field is emerging and requires more funding before such treatments are made available to patients. Reassuringly, more clinical trials have been funded in 2018 in Western Australia.
Tips to help people with Parkinson’s get a better night’s sleep can be accessed on websites such as: Shake it up Australia Foundation (partnering with the Michael J. Fox Foundation) and National Sleep Foundation (America).
Shake it up Australia Foundation also work closely with Parkinson’s WA and advertise trials to those wishing to participate. To learn more about the Parkinson’s community in WA contact Parkinson’s Western Australia or Dr Maria Pushpanathan.
The power of people in shaping good health