A new study shows that a quick depression questionnaire can improve depression screening among people with Parkinson’s and lead more people to get help for these symptoms.

Parkinson's disease (PD) is typically associated with hallmark movement signs like tremors and stiffness. However, non-movement symptoms like depression often go underdiagnosed and undertreated.

Up to half of all people with Parkinson's experience depression at some point, which can significantly impact their quality of life. Importantly, a large percentage of people with PD never receive treatments or psychotherapy. Which is why improving the screening and treatment of depression in the PD population is an unmet need.

A new study showed that introducing a five-minute questionnaire — the 15-question Geriatric Depression Scale (GDS-15) — to movement disorder clinics can improve the rate of depression screening and follow-up care for people with Parkinson’s.

About the Study & Results

The study, Improving Parkinson's Disease Care through Systematic Screening for Depression, was published in July 2024 in the peer-reviewed scientific journal Movement Disorders. It included five movement disorder clinics in the U.S. and Canada. The clinics used the GDS-15 scale because research has shown it to be effective at detecting depression among people with Parkinson’s and can be self-administered in less than five minutes.

The study utilized data from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s with more than 13,000 participants in five countries. Before the study, clinics reported that only 12% of people with PD received a formal depression screening, whereas 64% were screened informally and 24% did not receive screening.

During the study, 1,406 people were seen for follow-up care at the movement disorder clinics, and 59% of those people received the GDS-15 screening, while 29% were screened informally — resulting in a five-fold increase in formal depression screening.

Among those who were screened for depression, 45% were positive for depression, showing depression is a common symptom for people with PD. About half of those people were already being treated for depression, but about 12% started new treatment.

When the study began, average GDS-15 scores were 8.8 — just 12 months later, average scores decreased to 7.0 (a GDS-15 score of 5 or above indicates depression). While the cause of the improved GDS-15 scores remains unclear, study authors raise the possibility that the formal depression screening process and follow-up discussions with a doctor may have a positive impact on depression symptoms.

Some centers experienced challenges in implementing the formal depression screening process. The most common reasons include patients having insufficient internet access to fill out the form at home or not enough time for the staff to help fill out the form in-office.

In follow-up interviews with clinicians, nearly all (94.4%) agreed the GDS-15 questionnaire was a useful tool for identifying depression. Moreover, 64.7% reported that the program led to changes in clinical management for at least 25% of patients, suggesting it improved patient care.

Highlights

• Introducing a formal depression screening questionnaire — the 15-question Geriatric Depression Scale (GDS-15) — led to a five-fold increase in depression screening among five movement disorder clinics.
• Among those who were screened with GDS-15, 45% screened positive for depression. While half of those people were already being treated for depression, 12% started new treatment.
• A GDS-15 score of 5 or above indicates depression. When the study began, average GDS-15 scores were 8.8. Twelve months later, average scores decreased to 7.0.

What does this mean?

Formal screening for depression is one way to improve health care for those with Parkinson’s. The GDS-15 is one way to detect depression among those with Parkinson’s, however, it is not the only way to screen for depression.

What do these findings mean to the people with PD right now?

People with Parkinson’s are at higher risk for depression. However, not every PD doctor or clinic offers depression screenings or asks about mental health. If you experience any signs of depression or sadness, it is important to talk to your doctor.

Just as the symptoms and causes of depression can differ from person to person, so too can suitable treatment approaches. Exercise is a vital component of alleviating depression in PD. Primary treatments also include antidepressant medications and psychological counseling (psychotherapy).

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and mental health through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• Depression & Mood
• Mood: A Mind Guide to Parkinson's Disease
• Depression and PD: A Non-Drug Treatment Option
• Parkinson’s Outcomes Project: Key Findings

When it comes to Parkinson’s disease (PD), non-movement symptoms are often overlooked because they are not as visible as those of their movement counterparts. However, these symptoms can be just as challenging to everyday life. Learning the common signs can help you recognize and manage symptoms.

Explore our podcast episodes where we dive into non-movement symptoms. Each episode highlighted below strives to deepen your understanding of these symptoms, as well as offer strategies for managing them.

Let us know what other topics you would like to hear about

Apathy

Episode 151: Strategies to Address Apathy and Exercise Motivation

Apathy, a lack of interest or motivation, can be an issue for people with Parkinson’s and may interfere with daily activities, social interactions and overall well-being. Movement Disorders Neurologist, Nabila Dahodwala, MD, MS, Director at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, explains the impact of apathy on daily life and shares strategies to help address it and find the motivation to exercise.

Depression

Episode 145: Treating Depression

Depression is often overlooked and undertreated, despite it being a common symptom of Parkinson’s. Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary, a Parkinson’s Foundation Center of Excellence, discusses the importance of recognizing and treating depression.

Low Blood Pressure

Episode 144: How to Cope with Blood Pressure Fluctuations

Low blood pressure, also known as hypotension, can be dangerous if not treated. It may cause dizziness, fainting and falls, which can lead to fractures. Jeni Bednarek, RN, BSN, ACRP-CP, the team coordinator at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence, talks about how people with Parkinson’s can manage low blood pressure.

Nausea

Episode 135: Feeling Nausea with Parkinson’s

Nausea, or the feeling of discomfort in the stomach, can sometimes be caused by Parkinson’s, or as a side effect of medications. Andrew Feigin, MD, Professor of Neurology and Director of the Fresco Institute for Parkinson’s and Movement Disorders at New York University Langone Medical Center, a Parkinson’s Foundation Center of Excellence, discusses the causes of nausea, both from PD itself and from medication, and what people can do to help lessen or prevent it.

Sleep Disorders

Episode 121: Parkinson’s Disease and Sleep

Difficulty sleeping can impact your overall health and well-being. Dr. Aleksandar Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, discusses the causes of sleep problems, including insomnia, REM sleep behavior disorder and daytime sleepiness.

Subscribe to our podcast. Search for “Substantial Matters: Life and Science of Parkinson’s” on your favorite podcast platform.

Listen to every episodes at Parkinson.org/Podcast

Sleep recharges our brains and bodies, while boosting mental wellness. People living with Parkinson’s disease (PD) need even more time to reset and restore. Discover how Parkinson’s symptoms, medications or other health problems can impact your sleep, and what you can do to maximize slumber.

This article is based on Trouble with Zzz's: Sleep Challenges with Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented Aleksandar Videnovic, MD, MSc, associate professor of neurology at Harvard Medical School and director for the Massachusetts General Hospital Division of Sleep Medicine and Program on Sleep, Circadian Biology and Neurodegeneration.

Aging, PD and Trouble with Sleep

As people age, it may be harder to fall asleep and waking up at night can be more frequent. Parkinson’s can further disrupt restorative sleep. As many as 80-90% of people with Parkinson’s can experience a sleep problem during the course of the disease.

Parkinson’s-related brain changes upset the circadian system, sometimes called the body’s internal clock. PD also impacts sleep drive — the growing sensation as day turns to night of the need to sleep. Other elements of PD that can disrupt slumber include:

• Parkinson's symptoms, such as tremor or PD-related pain, may emerge overnight as medications wear off. Other symptoms include akinesia (difficulty moving or inability to move), rigidity, dyskinesia (erratic, involuntary movement) and more.
• Medications used to treat PD can interfere with sleep. Others can make it harder to stay alert during the day.
• Depression and anxiety are extremely common PD symptoms. These and other symptoms, such as hallucinations, can keep a person awake at night.
• Changes to the autonomic system, the body’s network for regulating jobs like breathing and blood pressure, impact sleep. Nocturia — excessive nighttime urination — can be common in PD.

Sleep disorders can be exhausting for a person with Parkinson’s, as well as their bed partner. These can include:

• Obstructive sleep apnea and other sleep-disordered breathing can obstruct the airway repeatedly during sleep, resulting in coughing, choking and frequent waking. People with sleep-disordered breathing experience microarousals, waking up to 60 times hourly, without recognizing it. Sleep apnea affects up to 10% of the population, impacting people without Parkinson’s and those with PD with the same frequency.
• Excessive daytime sleepiness (EDS) may make it difficult to stay awake during daylight hours or cause sudden daytime sleep. PD brain changes and symptoms, medication regimens, co-existent sleep disorders and age-related physical changes can all cause EDS. Up to 16% or more of people with PD may experience poor daytime alertness. Some may be unaware of how EDS affects them. A trusted companion can offer honest input. Sometimes, sleep attacks can come on without any warning, significantly impacting a person’s ability to drive safely.
• Restless legs syndrome (RLS), an uncomfortable feeling in the legs or feet and irresistible need to move, can impact some people even prior to a PD diagnosis. However, not everyone with Parkinson’s experiences RLS, nor will most people who experience RLS go on to develop PD.
• Rapid eye movement (REM) sleep behavior disorder (RBD): People dream and experience muscle relaxation during REM stage of sleep. RBD can affect up to half of people with Parkinson’s, impacting muscle relaxation and causing people to act out their dreams — talking, yelling or moving about.

Like restless legs syndrome, RBD can begin long before a Parkinson’s diagnosis. Although not everyone who lives with RBD will develop Parkinson’s, their risk of developing PD or Dementia with Lewy Bodies — diagnosed when cognitive decline happens before or alongside motor symptoms  —  is significantly higher. This is meaningful for Parkinson’s research.

As potential therapies evolve to slow PD progression, there may be a window of opportunity for preventative intervention in people who experience REM sleep behavior disorder but have yet to develop a neurodegenerative disease.

Management Strategies for Fragmented Sleep

Talk to your healthcare provider about sleep issues, fatigue or daytime sleepiness. Your doctor may ask questions about your sleep history. A careful review of each or your medications will help your doctor determine whether a simple adjustment or addition might improve slumber:

• Long-acting levodopa or additional levodopa is sometimes prescribed for bedtime use.
• Catechol-O-methyl transferase (COMT) is an enzyme in the body. It can impact the effectiveness of levodopa. COMT inhibitors prolong the benefits of levodopa. These are primarily used for wearing off (changes in the ability to move between doses of levodopa) but are sometimes also prescribed with levodopa for use at night.
• People taking diuretics might be directed to use them earlier in the day. Likewise, limiting the use of PD medications selegiline and amantadine later in the day might improve insomnia.
• Anticholinergic medications are sometimes used for nocturia, however, cognitive slowing can be a side effect. These can also cause confusion and hallucinations and are not recommended in older people.
• Caffeine and some stimulant medications can promote alertness during the day.

Mental wellness: Talk to your doctor about symptoms of depression or other emotional challenges. Parkinson’s impacts areas of the brain that regulate mood, sleep, energy and more. Caring for mental health also benefits sleep.

Sleep disorders: If your doctor suspects a sleep disorder such as obstructed breathing, restless legs or RBD, you might be referred for a sleep study in a sleep clinic.

• Sleep apnea treatment may require a dental appliance or a continuous positive airway pressure (CPAP) machine that is worn when sleeping or napping.
• Dopamine agonists — medications that rouse areas of the brain motivated by dopamine — benzodiazepines, opioids and a class of medications known as calcium channel alpha-2 delta ligands, such a gabapentin, are sometimes used for restless legs syndrome. Dopamine-blocking, anticholinergic and antihistamine medications should be avoided for RLS.
• Your doctor may recommend melatonin or the medication clonazepam for RBD. While antidepressants may help with some aspects of insomnia, some can unmask or worsen RBD.

Tips to Improve Shut-eye

A healthy sleep routine — sometimes called sleep hygiene — is another key component to a good night’s rest. Try these small changes that can make a big difference:

• Exercise regularly (aim for early in the day) to improve sleep quality and overall function.
• Limit naps: a short snooze earlier in the day, of 30 minutes or less, is less likely to interfere with nighttime sleep. 
• Avoid stimulants, such as caffeine, later in the day.
• Minimize your screen time before bed. Avoid screens entirely — including TV and mobile devices — in the bedroom.
• Go to sleep and rise at the same time, weekdays and weekends.
• Turn the lights out: light regulates the body’s clock, signaling that it is time to wake.
• Employ motion-detecting nightlights to safely guide you to the bathroom.
• Sleep in a wider bed that is lower to ground. This can minimize injuries and lessen the impact in case of an accidental fall.
• Consider a bedside rail to prevent falls; a bedside commode can also be helpful for people who have difficulty getting to the toilet at night.
• Use satin or silk sheets or pajamas to make it easier to turn in bed.

Adequate hydration can improve PD symptoms, boosting low blood pressure and easing constipation. However, drinking liquids too close to bedtime can cause frequent nighttime urination. Minimize beverages a few hours before bed.

Research

Light hitting the eyes is one of the biggest environmental factors regulating the circadian system. The timing of meals, exercise, naps and rest also influences our body clock. In turn, this timer regulates our mood, behavior, immune response and more. Researchers are exploring ways to improving circadian system function in PD.

Light therapy shows great promise as a noninvasive, widely available, nonpharmacological treatment to ease non-movement symptoms of Parkinson’s, including fatigue, sleep issues and mood changes.

In a 2017 JAMA Neurology journal study, Videnovic et al. found that exposure to bright light (10,000 lux) or dim-red light (less than 300 lux) — twice daily in one-hour sessions over two weeks — improved daytime alertness and sleep quality.

Those findings were carried over into the recently completed ENLITE PD trial conducted at 25 sites across North America. The study analyzes the effect of daily light therapy on PD symptoms, including sleep. At the time of this Expert Briefing, the study’s authors were preparing to submit their findings for publication, with the aim of conducting a phase III clinical trial.

Learn More

To learn more about Parkinson’s and sleep explore these resources:

• Parkinson’s Disease and Sleep
• Sleep Disorders
• Care Partner Deep Dive: Three Experts Discuss Sleep, Cognition and Mood in Parkinson's

Pain is a common, often overlooked symptom of Parkinson’s disease (PD). If you live with unaddressed pain, it can significantly impact your quality of life. Tracking, assessing and effectively managing your pain can make it easier to continue doing day-to-day activities. Find out how to begin taking control.

This article is based on Understanding Pain in Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented by Apurva Zawar, PT, DPT, Board Certified Geriatric Clinical Specialist, University of California, San Francisco volunteer assistant clinical professor and Beyond Rehab founder.

Research shows people living with Parkinson’s experience significantly higher levels of pain compared to people without PD. Pain in PD can make movement difficult and amplify stress, anxiety and depression. One of the best medications for PD symptoms is an active, social lifestyle. But when you feel overwhelmed, you are less likely to exercise, stay mentally active and connect socially. This can create a vicious cycle. Recognizing your pain patterns can help you take control and get back to living well.

Pain is a personal experience. It is important to communicate what you are feeling. Acute pain is often directly connected to an injury, while chronic pain can last three months or more. Use the tips below to track your pain experience a few days before you meet with your Parkinson’s doctor.

Determine whether your pain is linked to Parkinson’s

(Mylius et al., 2021)

If you answer yes to one or more of the below questions, your pain is likely PD-related:

• Has my pain started or become more severe since the onset of PD symptoms?
• Does my pain worsen when rigidity, tremors, or slowness of movements are more intense?
• Is my pain associated with excessive or abnormal movements (choreatic dyskinesia)?
• Does my pain improve when taking PD medications?

Classify your pain

There are three types of Parkinson’s pain:

1. Musculoskeletal and dystonic (nociceptive) pain

   Musculoskeletal aches include muscle tenderness, joint pain, decreased joint mobility and postural changes. Most people report lower limb and low back pain. In early Parkinson’s 34% of people experience musculoskeletal pain. It can impact nearly 50% of people living with advanced Parkinson’s (Valkovic et al., 2015).

   Dystonic pain is tied to abnormal, involuntary cramping movements in PD that can happen when the effect of levodopa medication wears off between doses. Over 10% people experience this type of pain around the time of diagnosis, while 23% of people who have lived longer with Parkinson’s are affected (Valkovic et al., 2015).

2. Neuropathic (radicular) pain can include burning, tingling, numbness and the feeling of being pricked by pins and needles. Nearly 20% of people experience this in the earlier PD stages. As symptoms advance, close to 35% of people feel neuropathic pain (Valkovic et al., 2015).
3. Central (nociplastic) pain is a constant, dull aching pain experienced by nearly 20% of people in early Parkinson’s and 25% of people living with advanced PD (Valkovic et al., 2015).

Rate your pain level

Ask yourself:

• How intense is the pain on a scale of 1 to 10, with 10 being the greatest possible pain?

• How often do you experience pain: occasionally, frequently or constantly?
• What is the level of impact pain had on your quality of life: minimal, moderate or major?

It’s important to note:

• What makes the pain worse or better?
• What does it feel like: achy, electric shock-like, dull?
• Is the pain in one place or does it move around the body?
• When did it start, and is it affected by the timing of PD medications?

Be sure to also list every medication you are taking and how frequently, including any over-the-counter drugs.

The Impact of PD Pain

Unmanaged pain in Parkinson’s can have a major bearing on well-being (Choi et al., 2017). It can occur at any time throughout the course of Parkinson’s, including:

• Pre-motor stages: Pain can begin one to two years before PD-related slowness, stiffness and balance issues (known as movement symptoms).
• Early Parkinson’s: People often report pain as one of their most bothersome non-movement symptoms. Research shows 20% percent of people with Parkinson’s experience chronic pain at the time of diagnosis (Mylius et al., 2021).
• Advanced PD: People living with Parkinson’s for five years or more reported experiencing 35% more pain than people in early stages of PD.

What Causes PD Pain?

Pain affects nearly 80% of people throughout the course of Parkinson’s (Mylius et al., 2021). PD-related pain can stem from many causes, such as:

• Decreased dopamine production. Parkinson’s diminishes this feel-good brain chemical that influences movement, mood and more.
• Dysfunction of pain pathways. Parkinson’s impairs the nerve pathways that control sensation and pain in the brain, brainstem and spinal cord.
• Musculoskeletal pain. People with Parkinson’s often feel aching muscles and joints.
• Altered inflammatory signals. The body sends chemical messages to initiate healing after injury. Parkinson’s can interrupt or change these messages.

Getting Pain Management Right

Relief is often most effective for people who are empowered to take an active, educated role in pain recovery. Parkinson’s pain and other symptoms can change over time. Treatment should be tailored to your needs. Building a team of healthcare professionals well-versed in PD who collaborate in your care can help you address challenges as you face them.

Managing pain often begins with a neurologist or movement disorders specialist, who can work with you to optimize Parkinson’s medication and help you find the right interdisciplinary care. Tell your doctor about any mood changes you are experiencing. Depression and anxiety are common PD symptoms. Untreated, these can intensify other Parkinson's symptoms.

You might receive a referral to a physical or occupational therapist (or both), speech-language pathologist, psychologist, wellness coach or other professional to help you build a pain-management toolbox. Healthy habits, exercise and education are all essential to easing discomfort.

Recovery in Action

Participants in PD PowerUp, a four-week Parkinson’s pain management study funded in 2023 by the Parkinson’s Foundation, reported increased movement and the ability to actively manage their pain symptoms following the program. This program gave them tools to:

• Interpret and understand what causes pain.
• Increase confidence in pain management.
• Gain active coping skills.
• Boost engagement with others.

People who participated decreased dependency on over-the-counter pain medications by 20% and increased use of active coping strategies by 30%.

Tips to Recognize Pain

Look out for these pain triggers:

• Watch your posture: sitting or sleeping in an uncomfortable position can activate pain.
• Notice whether seasonal changes (which can influence hormonal changes) impact how you feel.
• Can your pain be related to stiffness or sedentary activity? Take time to stretch. Try our PD-tailored Fitness Friday: Flex and Flexibility video that you can do from home, at any time.
• If you experience other inflammatory conditions, including age-related stiffness such as osteoarthritis, talk to your healthcare team about ways to address and manage your discomfort.

Learn More

Explore our resources about pain management in Parkinson’s:

• Pain in Parkinson's Disease

• A Beginner's Guide to Managing Pain Through Mindfulness
• Understanding Pain
• PD Health @ Home Fitness Friday exercise videos