It is vital for people living with Parkinson's disease (PD) and care partners to make social connections and find support. Whether you have been newly diagnosed with PD, have been living with PD for a while, or are caring for someone with PD, connecting with others can help. 

Challenges associated with PD, including movement symptoms, cognitive changes and emotional fluctuations, can lead to social withdrawal and isolation. Engaging in social activities can provide a valuable support network, combat feelings of depression and loneliness, maintain cognitive function and emotional well-being.  

Why are support groups important? 

Finding the right support group can help you build your PD community. In these groups, people share their experiences, learn from each other, and get access to resources that suit their needs.  

Through these connections, individuals affected by PD not only find companionship and empathy but also gain a sense of belonging and resilience that can improve their PD journey. With the support provided by groups, people affected by PD can navigate the condition with greater confidence, hope and well-being. 

Types of Support Groups 

There are many kinds of PD support groups available. They include: 

• People with PD: These groups focus on people living with PD, allowing them to share their experiences, learn from each other and offer support. 

• Care partners: Care partners know Parkinson’s and its ups and downs. These groups provide a space for care partners to share their challenges, receive support and learn coping strategies. 

• Combined Groups: Many support groups welcome people with PD and care partners, fostering a supportive environment where both groups can share experiences, offer mutual support and learn from each other's perspectives. 

• Young-Onset PD (YOPD): These groups cater to those diagnosed with PD at a younger age, addressing unique challenges and concerns relevant to them. 

• Virtual: Online communities that allow members to share experiences from the comfort of their own home. 

• In-person: Face-to-face gatherings where people can meet to discuss their experiences. 

Tips for Starting A Support Group 

If you have not found a support group that is the right fit for you, consider starting your own. Explore our Support Group Guide for a step-by-step planning process. The most important part of any support group is to ensure members feel accepted, respected and comfortable when attending the group.  

Building and launching a support group requires planning, organization and attention to detail. The “let’s get started” phase can be overwhelming, but breaking down a big task into smaller tasks can make planning more manageable. Consider these key aspects before launching a support group: 

1. Who will attend this group? 

This step is crucial for building the foundation of your support group. Make sure you know your audience before you figure out any specific details about the group. You can choose from the types of support groups above to get started.  

2. Where will the group take place? 

If you decide to start an in-person support group, start looking for a potential meeting space. The location can make or break your group. Rule out locations that are not easily accessible.  

These locations are generally open to hosting support groups: 

• Public libraries 

• Hospitals 

• Community living centers 

• Places of worship (remember accessibility requirements for older buildings) 

• Town halls 

• Senior centers 

• Senior living facilities or nursing homes 

Each community is unique, so consider what other possibilities could exist in yours. Talk to people and let them know what you are looking for. Let others spread the word to help you secure a solid, consistent location. 

3. How often will your group meet? 

Many PD support groups meet monthly. Find the frequency that works for your group. Consider that the more often you meet, the faster members can become fatigued, and more planning will be required. Meeting less than once a month can limit the group’s ability to build relationships.  

Having a consistent day of the month (for instance, the second Tuesday of each month) helps people to remember when the group meets. 

An even bigger consideration is time of day — will you meet in the morning, afternoon, or evening? Make the decision that works best for you as a leader and ask potential participants for feedback. Establishing a regular time and place will help your group expand as more people become aware of its existence. 

4. What is the support group’s format? 

There are many formats you may choose to use for your group. The best advice is to stay flexible. You may start out with a formal meeting agenda and decide that you want to change things up and go less formal. Listen to what your group members tell you!  

To help “break the ice” at the start of each meeting, particularly for new members in attendance, introductions are a great technique. Not only does everyone get a chance to say something, but it also helps members remember names and relationships. 

5. How long are meetings? 

Support groups usually meet for no more than 90 minutes. It also may be helpful to design a break halfway through for refreshments and a rest room break. Find what works best for the group. 

Parkinson’s Education and Finding Guest Speakers 

Besides planning the basics, it is also important to consider things like topics for each meeting and if you plan to have a guest speaker. One common need for the Parkinson’s community is disease education.  

Guest speakers can include:  

• Local PD experts you or group members know. 

• Staff from a Parkinson’s Foundation Centers of Excellence  

• Parkinson’s Foundation volunteer. Email us at Volunteer@Parkinson.org and we can help connect you to someone in your area. 

If you are not sure where to start, ask your group members for suggestions and topic recommendations. 

Promoting Your Group 

Promotion is essential for a successful support group. Word of mouth can help but it is typically not enough. Consider creating a flyer or letter announcing the group, starting date, location and contact person. If you have a speaker scheduled, be sure to include that information and the topic they will be discussing. 

Social media can also be helpful in raising awareness of your new group. It can be especially helpful for reaching younger people with PD and their care partners. Managing a social media page could be a great volunteer role for a group member to take on. 

How To Find A Support Group 

Here are two ways to find a local PD support group: 

1. Visit our Parkinson’s Foundation Chapter page to search for one in your area. 

2. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org. 

For more information on starting a support group, check out our Support Group Guide. 

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

For people with Parkinson’s disease (PD) and care partners, dedicating time to maintaining mental health can feel like its own battle. From the mental exhaustion leading up to a Parkinson’s diagnosis to what can feel like ever-changing symptoms as PD progresses, it’s easy for mental health to not be a priority.

Below we explore eight practical ways to work on your mental health. Most of these can be applied to people with PD and care partners, as both are constantly navigating the complexities of mental health symptoms alongside the physical ones.

Jump to Our Top 7 Mental Health Resources

1.  Get to know the science behind the psychological impact of Parkinson's.

Depression, anxiety and apathy are all common Parkinson’s symptoms. In fact, up to 50% of people with Parkinson’s will experience some form of depression. Our research shows that together, depression and anxiety have the greatest impact on the health of people with PD, even more than the movement challenges.

The science behind mood symptoms is that Parkinson’s directly impacts the production of dopamine in the brain. Dopamine plays an essential role in helping the body move smoothly and the brain process emotions.

What can you do? Get to know non-movement symptoms. Learn the signs of depression. Bring up any mood-related symptoms to your Parkinson’s doctor. Together, you can find treatment options that work for you.

Resource that can help: Mood: A Mind Guide to Parkinson's Disease

2.  Exercise.

Research shows that exercise and physical activity can not only maintain and improve mobility, flexibility and balance but also ease non-movement PD symptoms. Exercise releases chemicals in the brain such as neurotransmitters and endorphins that make us feel good. It reduces immune system chemicals that can worsen depression, and it increases body temperature, which may have a calming effect.

PD-tailored exercises classes, from non-contact boxing to indoor cycling, are excellent forms of exercise and have the bonus of helping build your PD support system.

Increasing physical activity alone was shown in some studies to improve mood. Walking, gardening, housework, washing the car — any activity that gets you moving can help improve your mood. Even adding small amounts of physical activity throughout your day can be useful.

Resource that can help: Try an on-demand exercise class through our Fitness Friday videos, or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a PD-tailored exercise class near you. 

3.  Try complementary therapies.

Explore holistic approaches that can support mental wellness in addition to your treatment plan. About 40% of people with Parkinson’s use some type of complementary therapy as part of their regular treatment routine.

Complementary therapies include:

• Exercises, like Tai Chi and Yoga
• Vitamins and Supplements
• Acupuncture
• Meditation
• Massage Therapy
• Medical Marijuana

Talk to your primary care doctor before starting any complementary therapy. 

Resource that can help: Top Takeaways About Complementary Therapies and PD

4.  Change your diet.

Eating a whole food, plant-based diet, often called the Mediterranean diet, can help you live well with PD. Eat what you need to be happy — but also eat more of the food that is good for your health.

If you have Parkinson’s, every healthy lifestyle change can help. While it can be challenging to eat better, most people make minor diet changes gradually that become major changes over time. Always consult your physician before making major changes.

Resource that can help: Diet & Nutrition page

5.  Attend an in-person event and try a new resource.

For everyone, finding the tools that help you cope with stress and anxiety can be a lifelong endeavor. Explore Parkinson’s Foundation resources that can help you get the support you need.

These tools are designed to help empower you:  

• Mindfulness Mondays: Take part in guided relaxation techniques to help boost brain power and reduce stress. Explore recorded events.
• Hospital Safety Guide can help you prepare for an upcoming hospital stay.
• Find your local chapter for nearby support groups and exercise classes.
• Explore our PD Library for the PD topic that matters most to you right now.
• Build your community and find a nearby in-person event.

Resource that can help: Resources & Support page

6.  For care partners: check in with yourself.

How can I support my loved one with Parkinson’s through mental health changes? How can I support my own mental health? As a caregiver, you have a dual role — taking care of the person with Parkinson’s and taking care of yourself. These roles are equally important! A strong personal support network will help you have an outlet for your emotions and be able to take time off. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a local caregiver support group.

Regularly check in with yourself. Seek help professionally or from a trusted friend as you need it. Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.

Resource that can help: Caring for the Care Partner

7.  For everyone: Build your mental health support team.

Recognizing your individual emotional needs and building a strong support network that includes mental health professionals is part of a comprehensive plan to navigate PD.

Surround yourself with people who will listen, uplift and encourage you when you need them. Look for support among your friends, family and community. Take the time to find the right therapist. It may be difficult to find one familiar with PD, but those who are specialized in chronic illness, grief, anxiety and depression can often address common feelings and experiences of living with a PD diagnosis.

Resource that can help: Tips for Daily Living: Building Your Mental Health Team

8.  For everyone: Call our Helpline for personalized resources and tools.

Our Helpline is here to answer your Parkinson’s questions. Speak to our Helpline specialists to find resources that work best for you or your loved one with Parkinson’s. Regarding mental health, our Helpline can provide referrals to:

• Healthcare professionals.
• Community resources including exercise classes and local support groups.
• Mental health resources.

Resource that can help: Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

Our Top 7 Mental Health Resources

1. Expert Briefing: Mental Health and PD
2. Mindfulness Mondays: Take part in guided relaxation techniques to help boost brain power and reduce stress. Explore recorded events.
3. Tips for Daily Living: Building Your Mental Health Team
4. Episode 118: Managing Mental Health Problems with Parkinson’s
5. How to Advocate for Your Mental Health with Parkinson’s
6. For Care Partners: Answering the Top Care Partner Questions About Mental Health
7. For Care Partners: Caring for the Care Partner

Every day at we are grateful for the wonderful volunteers, known as Parkinson’s Foundation Ambassadors, who help make a difference in the lives of people with Parkinson’s disease (PD).

National Volunteer Week is April 17 to 23, and we want to celebrate and thank all the hard-working volunteers across the globe who spread awareness and improve their PD communities.

There are many ways to get involved and start volunteering, from Moving Day to joining our People with Parkinson’s Advisory Council. Finding the opportunity that fits your abilities and passion is key. Below are four volunteers who did just that, and who are excited to share their stories with you in the hopes that you might also find the volunteer role that works for you!

Rebecca

Volunteer, Brother is living with Parkinson’s 

Selfishness is normally considered a negative characteristic, but in this case, I’m proud to be a selfish volunteer for the Parkinson’s Foundation. Luckily, everything I do for the Foundation helps Greg, and vicariously helps others too! I think that’s pretty positive.

Read Rebecca’s story
 

Mike & Angela

Parkinson’s Research Advocates, Mike is Living with Parkinson’s and Angela is his care partner

Back in the day, it was uncommon for older people, especially African Americans, to seek medical attention for physical and mental needs. Now, as a Research Advocate, I can ask questions and help raise awareness for PD. I use this role to spread information about the importance of clinical research and genetic testing.

Read Mike and Angela’s story
 

Darrell

Volunteer, Living with Parkinson’s

There are many volunteer roles in the Parkinson’s Foundation and my interest settled on giving presentations in the community. First, I needed to complete the Ambassador training which was very helpful and increased my PD knowledge. My motivation to pass the training quickly became my reality and I became a Parkinson’s Foundation Ambassador for the Georgia Chapter.

Read Darrell’s story
 

Whether you are interested in becoming a Parkinson’s Foundation Ambassador like Darrell, a research advocate like Mike & Angela, or speaking to people in your community like Rebecca, we want to hear from you! Get to know more of our volunteers through this special volunteer edition podcast episode.

Complete our volunteer interest form to get started. You can also chat with the volunteer engagement team to help us educate others about PD and connect them to life-saving resources.

Already a volunteer? Check out our course offerings today! 

Learn more about how you can become a Parkinson’s Foundation Ambassador.