Parkinson’s disease (PD) changes the brain, which can impact the whole body. While slowed movement and stiffness are among the more familiar PD symptoms, Parkinson’s can also affect cognition — the way someone thinks, how they learn, make decisions, approach and solve problems. Though some people notice thinking changes (also called cognitive changes) decades after living with PD, others can begin noticing challenges even prior to a diagnosis. 

Cognitive changes can be difficult to discuss. People sometimes fear that others will see or treat them differently if they open up about their thinking issues. Additionally, they may worry about losing their place in the family, livelihood or independence. Though challenging, recognizing and talking about cognitive changes can help you and your care team identify the best therapies and coping strategies to promote your mental well-being.

Our Mental Wellness Series is dedicated to mental health conversations. This article complements our virtual round-table conversation, Addressing Parkinson’s-Related Thinking Changes. This article can help you recognize, treat and cope with cognitive changes related to Parkinson’s:

Recognizing PD-Related Thinking Changes

Have you ever said, “don’t talk to me while I’m cooking,” or doing a specific task? While everyone struggles to some degree with multitasking, it is particularly difficult for people with Parkinson’s. Other tasks that rely on executive function, such as participating in group conversations, reading a book or balancing a checkbook, can also be challenging. 

Executive function is an umbrella term used to cover many cognitive skills that impact daily living. These skills include attention, focus and multitasking, as well as those involved in problem solving, planning and following multi-step instructions. These abilities help us accomplish everyday tasks and make important life decisions. Parkinson’s can also impact other cognitive areas, such as thinking speed, word-finding, language and speech, vision, depth perception and more. 

Addressing Cognitive Symptoms

Since Parkinson’s disease affects cognition, it can be hard to know whether memory and thinking changes are PD-related or due to normal aging, medication, stress, sleep issues, depression, anxiety or other health conditions. If you or a loved one suspect memory or thinking changes, talk to your neurologist. Sometimes, adjusting PD medications can help. Other times, effectively treating other symptoms and conditions can improve thinking issues. 

Exercise is a powerful tool to improve not only PD movement symptoms, but some non-movement symptoms such as changes in memory and thinking. Research shows that exercising regularly can improve concentration, information processing and overall cognition. Participating in a Parkinson’s-specific exercise class, going for a walk, taking a yoga or Tai Chi class or stretching can help to improve your cognitive function. 

Your neurologist might also refer you to other specialists, such as neuropsychologist or speech-language pathologist. These healthcare professionals offer specialized assessments and teach strategies to cope with thinking changes and improve daily living.

Prioritizing Mental Wellness Throughout Cognitive Change

Self-care, creative strategies and staying social can help you maintain your mental well-being while coping with thinking changes. These tips can help:

1. Give yourself permission to feel grief. Our thoughts, memories and the way we think form part of our identities. Experiencing cognitive change can cause feelings of loss. Recognize and honor your feelings around these changes.
2. Lighten your load. Accept help — whether with medication management, making your home safer or transportation. Even though it can be difficult, accepting help allows you to focus on other important tasks and activities.
3. Lessen your stress. Research suggests stress can worsen movement and non-movement PD symptoms, including executive function and cognition. Exercise and mindfulness, the practice of being fully in the present moment, decrease stress and are linked to symptom improvement.
4. Use strategies to compensate. Sticking to a daily routine and limiting distractions can make it easier to remember the essentials. Reminders on your smartphone or on a piece of paper in the right location can also provide useful cues to keep you on track. Other strategies include gathering all items needed for a task — preparing a recipe, for example — and putting them away as you go.  
5. Stay engaged. Building healthy social connections can help keep cognition strong. Foster relationships with friends, family and members of your community. Consider finding a new support group to share your experience and connect with others. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) to find a nearby group or visit PD Conversations, our online community.

Advanced Thinking Changes

As Parkinson’s advances, thinking changes can evolve from subtle changes to mild cognitive impairment (MCI) or even dementia — more severe thinking changes that can impact independence. Talk to your doctor about how to best manage advanced thinking changes. 

Research shows some medications used in Alzheimer’s disease may have benefits in Parkinson’s disease dementia (PDD), including donepezil, galantamine and the FDA-approved PDD medication, rivastigmine.

Helpful Resources

The Parkinson’s Foundation is here for you. Explore more of our mental wellness resources now:

• Cognition: A Guide to Thinking Changes in Parkinson's Disease
• Let's Talk About Dementia
• More Than Movement: Addressing Cognitive and Behavioral Challenges in Caring for PD

Research shows that touch boosts physical and mental wellness — it can lower heart rate, decrease depression and anxiety, strengthen the immune system and relieve pain. For couples, touch communicates affection and acceptance, which plays an important role in supporting intimacy.

When people talk about intimacy in relationships, they commonly focus on sex; however, there are many types of intimacy, including emotional, intellectual, spiritual and physical intimacy. These are often interconnected and build upon one another. Physical intimacy — both sexual and non-sexual touch — helps promote connection and overall wellbeing.

Like everything else in a relationship, physical intimacy evolves as people change and new challenges arise. With Parkinson’s disease (PD), changing relationship roles, self-esteem issues, stress, medication side effects and PD symptoms — including movement issues, mood changes, urinary problems and fatigue — can influence sexual health and physical intimacy. Care partners also experience stress, depression, fatigue and other health issues over time that can impact physical connection.

Our new Mental Wellness Series is dedicated to mental health conversations. This article complements our virtual round-table conversation, Redefining Intimacy in Parkinson's Disease & Beyond, which features certified sex therapist Gila Bronner, MPH. The below tips can help you find new ways to build intimacy with your partner while navigating PD-related challenges:

1. Build Connection with Your Partner

Life’s pressures and the day-to-day stress of living with a chronic illness like PD can cause couples to drift apart. Look for ways to stay connected and continue growing together. Share your thoughts and feelings. Spend quality time together. Take a walk, make a date for coffee, read to each other, watch a funny movie or take dance lessons — anything that unites you as friends and reduces stress.

Discussing sex or physical intimacy issues can be uncomfortable and frustrating. Many couples need help navigating these conversations. Don’t be afraid to seek out counseling or join a support group, either together or separately. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a counselor or a support group.

2. Enjoy the Moment

Even just a minute of physical touch can boost “happiness” hormones, such as oxytocin and serotonin, and reduce cortisol and noradrenaline and other “stress” hormones that can cause anxiety and restlessness. Having expectations that physical touch will lead to a specific outcome can eliminate the pleasure of the experience, create anxiety or even lead to fear.

Rather than planning for a particular result, aim for connection and pleasure. Put on a few songs, take time to exchange gentle touch with your partner, such as caressing the face, arms or shoulders, and enjoy the experience — without any demands or expectations.

3. Broaden Your Horizons

It has often been said that comparison is the thief of joy. Defining physical intimacy in terms of what it means to others, what we have been told it should mean to us or by what it has meant to us in the past can diminish our own experiences.

If you and your partner are experiencing mismatched sexual desire, talk about it. Is it due to stress, fatigue, hormones, PD or another health issue? Sexual desire and activities change over the years for a variety of reasons.

Staying connected through touch is vital to a healthy, loving relationship. Try to meet each other where you are. Of course, if you are both on the same page, sexual activity doesn’t need to stop just because it can’t be the same as it used to be. You might need to adapt your techniques, explore modifications or even plan out those moments that go beyond sensual touch.

4. Discuss Intimacy with Your Healthcare Team

Many PD symptoms affect sexual health in men and women, as well as the ability to touch, be close, communicate or even concentrate. Some of these issues can be treated, but it can be difficult to know who to turn to for advice.

For people with Parkinson’s and care partners, talking to a medical professional they feel comfortable with is often the first step, suggests Gila Bronner. Your neurologist, primary care doctor or another healthcare professional can offer advice, treatment or refer you to the appropriate specialist, such as a urologist, sex therapist or counselor.

5. Be Aware of Medication Side Effects

Dopamine agonist medications sometimes used to treat PD symptoms can lead to impulse control and hypersexuality issues. People experiencing these issues are at risk of putting themselves or others in unsafe or unhealthy situations. If you notice these side effects, let the neurologist know right away, as these medications may need to be reduced or discontinued.

Other medications, such as those for high blood pressure or antidepressants, can also impact sexual function. Discuss any concerns over medication side effects or your sexual health with your doctor, who can recommend medication adjustments or appropriate therapies.

Helpful Resources

The Parkinson’s Foundation is here for you. Explore more of our mental wellness resources now:

• Intimacy and Parkinson’s Fact Sheet
• Female Sexual Health & Parkinson’s
• Male Sexual Health & Parkinson’s
• Emotional and Mental Health

Parkinson’s disease (PD) is life-changing. For some people, a diagnosis can be a relief — an explanation for ongoing, unexplained symptoms. Others might experience loss or grief. Some may not even begin to process a diagnosis until years later.

Coming to terms with a Parkinson’s diagnosis is often the first of many changes a person living with the disease will navigate. The path forward, what you expect in a day, in relationships or in the future, can be uncertain. These day-to-day uncertainties can bring about feelings of ambiguous loss (a type of loss without closure).

In January 2023, the Parkinson’s Foundation launched our Mental Wellness Series, featuring blog articles and webinars dedicated to mental health conversations. The below tips are adapted from our first virtual round-table conversation in the new series. These tips can help you begin to discover healthy ways to navigate change when it comes to Parkinson’s.

1. Acknowledge your grief or feelings of loss.
   Throughout life, we experience change. Hobbies, careers, relationships and roles can further change and evolve with Parkinson’s disease. When uncertainty feels like a frequent companion, life can be challenging. Honor your feelings around these changes.
2. Be kind to yourself.
   Whether you are a person with Parkinson’s or a care partner, it’s important to recognize the challenges you face and take time out for self-care. Mindfulness can be helpful in processing change and practicing acceptance, and exercise can ease depression and other PD symptoms.
3. Lighten your load.
   Connection — sharing your worries, your trials and your joys, and listening to the experiences of others walking their own path with Parkinson’s — are good reminders that you are not alone. Whether talking to a trusted friend, reaching out to a local support group or connecting through an online discussion group, such as PD Conversations, you can begin to open up about your hopes and frustrations.
4. Build a care team.
   People experience the symptoms of Parkinson’s differently. Empower yourself with information on the disease management therapies that work best for you. Team-based care relies on various healthcare professionals with PD expertise to manage your symptoms on an as-needed basis.
5. Mental health care can help you work through change. This can include counseling and psychotherapy (talk therapy). Find reasons to hope.
   Radical acceptance is when you acknowledge and honor the reality of life, as it is, in the moment. It can free you to channel your energy toward activities in which you find purpose, meaning and hope. For some, volunteering holds promise and purpose. Others find hope and community through raising awareness or sharing their story. In the face of continual change, exploring healthy coping techniques and finding mental wellness strategies that work for you can help you stay connected to what matters most.

Helpful Resources

The Parkinson’s Foundation is here for you. Explore more of our Mental Wellness resources now:

• 6 Questions for Exploring Your Parkinson’s-Related Grief
• 6 Helpful Tips for Finding Your Ideal Mental Health Counselor

• Emotional and Mental Health

Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations.

Question: With Parkinson’s, how do you find enough time in the day to get everything done and not feel completely overwhelmed? I'm trying to find enough hours in the day to get in the exercise, the cognitive activity, my daily household chores, eating right and taking meds. Any tips?

A Parkinson’s disease diagnosis changes many areas of your life. You may have to readjust the way you work, rest and live. The changes that come with PD can cause emotional distress. Common PD symptoms may also include anxiety, apathy and depression. It is normal to have overwhelming feelings through all the changes of living with Parkinson’s, but there are resources to support your mental health and help you live well with PD.

Time management can sometimes feel like another task for your to do list, but it is crucial to create a schedule and plan that works for you and your unique PD needs. The change of lifestyle that comes with a Parkinson’s diagnosis is unavoidable, but there are ways to actively respond to this change.

Here are tips to help you manage your time:

• Establish a consistent schedule. You may not always be able to plan for everything but creating a consistent schedule can help life feel less overwhelming. Talking to your doctor about the priorities and needs of your health is important for establishing a schedule.
• Make time for rest. During the busyness of life, it can feel impossible to create time to rest. Setting aside time to slow down and relax can mean just 15 minutes of your day. Rest will look different for every person, but it should be a self-care activity that brightens your day and allows you to relax. Practicing self-care and rest can help to ease the overwhelmed feelings and bring mindfulness to your day.
• Create goals for what you want to get done each day. Small, achievable goals can help you move forward with your health. These goals do not have to always be serious; you can create fun goals like going on a walk in a beautiful park or making a new recipe that sounds delicious.
• Make time with friends and family. During the day-to-day stress, it is normal to feel lonely. Having intentional time with people you love can help support your mental health. This can be a space to process what you are feeling and connect with loved ones.
• Talk with professionals to clarify any confusion and process stress. You are not alone in living with Parkinson’s. It is important to talk to the people on your care team about what you are experiencing. Health professionals can help you manage and plan what needs to get done in your daily life. It may be helpful to talk to a mental health professional about the emotions you experience as well.
• Find exercise classes and mental health activities that work for you. Looking for quick, on-demand exercises for your mind or body? Our Mindfulness Mondays videos offer guided relaxation techniques, while our Fitness Friday videos provide at-home workouts led by exercise pros.

We have resources to help with the overwhelmed feelings when living with PD:

• Getting Support
• Mental Health in a Medical Setting
• Managing Stress with a Mindful Approach
• Key Questions for Your Doctor's Visit
• Channeling Creativity Throughout the Parkinson’s Journey
• Staying Active: Hobbies and Leisure Pursuits

We are here to support you and your family through these changes. Please call the Parkinson’s Foundation Helpline for answers to your Parkinson’s questions or referrals to nearby health professionals, support groups or exercise programs at 1-800-4PD-INFO (1-800-473-4636).

Do you have a question for the PD community? Check out our PD Conversation discussion groups: Newly Diagnosed, Symptoms, Caregiving, Tips for Daily Living, Young Onset and more.

There are more than 110,000 veterans living with Parkinson’s disease (PD). The Parkinson’s Foundation is interested in the differences between those who receive care at the Veteran’s Health Administration (VHA), a government organization within the Veteran’s Administration (VA) that provides primary and specialized healthcare to veterans of the U.S. military, and the veterans who receive care elsewhere.

A Parkinson’s Foundation survey sought to understand the health status, demographics, and health care utilization of veterans living with PD. The goal was to uncover differences between those who received care within the VHA versus those outside of the VHA.

In the U.S. today, there are more than 19 million veterans, yet less than half of these veterans receive care through the VHA. It is important to find out how care can be improved and in what areas care needs to be improved in order to provide the best possible care for veterans living with PD.

Survey Results

Demographics

The Parkinson’s Foundation distributed the survey to 1,532 veterans living with PD in July 2021 and analyzed 409 complete responses. Survey participant demographics include:

• Responses from 47 states
• Average respondent age was 74 years
• Average amount of time living with PD is 7 years
• Primarily white males with around 94% of respondents being white and 92% being male.
• Respondents were mainly retired (85%)

Health Service Utilization

Only one-fifth of participants reported receiving care from the VHA. Among those who utilized care from the VHA, 23% did not know that the VHA offered specialized care. Among all respondents:

• 77% reported seeing a neurologist specializing in PD
• 75% reported being given a referral for either physical therapy, occupational therapy, speech language pathology or mental health therapy from their PD provider
• Physical therapy was the most common referral (67%)

Mental Health

One in three respondents reported mental health concerns in the previous 12 months. Those receiving care at the VHA were more likely to report mental health concerns and were more likely to report poorer mental health, but were also more likely to talk about their mental health concerns with someone (a doctor, friend, family member, etc.).

Reported Falls

Among all respondents:

• One out of five reported falling frequently
• Two out of five reported having frequent near falls
• One-fifth of those who experienced one or more falls, did not report the fall(s) to anyone.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Explore the below Parkinson’s Foundation resources for veterans and their loved ones:

• Veterans and Parkinson’s Disease
• Parkinson’s Foundation Surveys

Many people first heard the term dementia with Lewy bodies when it grappled headlines alongside Robin Williams, who was diagnosed with the disease before his passing. What should you know about this brain disease? 

Approximately 1.4 million people in the U.S. are estimated to live with dementia with Lewy bodies (DLB), a progressive brain disorder also known as Lewy body dementia. This progressive disease is often difficult to diagnose. However, knowing the signs can help you or your loved one get answers, and treatment, sooner. 

Symptoms  

Dementia with Lewy bodies can cause confusion, alter the way a person thinks and behaves and impact movement and memory.  

Symptoms include: 

• Challenges with memory, concentration or multitasking. 

• Tremor 

• Rigidity 

• Slow movement 

• Balance issues and other movement symptoms 

• Sleep disorders including Rapid eye movement (REM) and Sleep behavior disorder (RBD), which can cause a person to physically act out their dreams. 

• Depression is a common symptom for DLB and Parkinson’s. Untreated, depression can lead to suicidal thoughts.  

Diagnosis 

Dementia with Lewy bodies is diagnosed when cognitive decline (thinking changes) is an early symptom, occurring before or within a year of the onset of movement symptoms. 

DLB is known as an atypical parkinsonism. Atypical parkinsonism is difficult to diagnose. Over half of the people living with atypical parkinsonism disorders are initially diagnosed with Parkinson’s disease (PD). In most cases, people see multiple doctors before receiving a diagnosis. 

Treatment 

While there are currently no medications that slow or reverse DLB, there are many treatments aimed at relieving symptoms and helping ensure safety. People living with dementia with Lewy bodies benefit most from comprehensive, team-based healthcare that includes a mental health professional.  

Caring for the body and the mind — through medication, physical and mental exercise — is essential for people living with DLB. 

Symptom management is tailored to a person’s unique needs and can include: 

• Medications such as donepezil (Aricept), galantamine (Razadyne) or rivastigmine (Exelon), may improve cognitive symptoms. 

• Selective serotonin reuptake inhibitors (SSRIs) and Serotonin and norepinephrine reuptake inhibitors (SNRIs) medicines are used to address depression and anxiety.  

• Clozapine (Clozaril), quetiapine (Seroquel) and pimavanserin (Nuplazid) are used to lessen hallucinations. 

• Melatonin or clonazepam can be helpful for RBD. 

For those with dementia with Lewy bodies, many Parkinson’s dopamine medications can cause or worsen confusion. These may need to be reduced or eliminated, under a doctor’s guidance. Certain medications sometimes used to treat tremor, called anticholinergics, such as trihexyphenidyl (Artane) and amantadine, can also negatively impact thinking. 

Older antidepressants, some bladder medications and nonprescription antihistamines containing diphenhydramine (Benadryl and others) can also negatively impact cognition. 

Learn More 

If you recognize dementia with Lewy bodies symptoms in your loved one, speak to their Parkinson’s doctor, or a neurologist, who can help you find answers. For more information, explore these resources:  

• Lewy Body Dementia Association 

• Dementia with Lewy Bodies 

• Robin Williams: Lewy Body Dementia, Suicide and Parkinson’s 

• Podcast Episode 87: What is Lewy Body Dementia and How Does it Relate to Parkinson’s? 

• Dementia & Parkinson’s 

We’re here for you. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s and caregiving questions.  

April is Parkinson’s disease awareness month and we thought it would be fitting to discuss how we are approaching the measurement of quality, and how best to measure depression at the bedside in Parkinson’s disease.

The Parkinson's Foundation has been committed to improving the quality of care throughout its Centers of Excellence network and throughout the world by funding and promoting the Quality Improvement Initiative Study. The study was modeled after the Cystic Fibrosis Foundation’s successful registry, profiled by Atul Gawande. In the Cystic Fibrosis experience, their focus on identifying best practices yielded a 10 year increase in life expectancy. In Parkinson’s disease we are hoping for similar success.

The Parkinson's Foundation Quality Improvement Initiative was launched several years ago and the aim was to understand Parkinson’s disease and its care by annually completing a simple profile of the status of people with Parkinson’s and the treatments they receive: one patient assessed on one page, once a year. The study now has 5000 enrolled patients, and, by looking at how patients change each year, we are getting new insight into important issues like mobility, depression, and cognition in patients and their impacts on quality of life, caregiver stress, and hospitalization. 

A management guru named Peter Drucker described his philosophy as, “what’s measured improves.” Now, for the first time in a massive, multi-center study across all stages of the disease, we are measuring health and health care in people with Parkinson’s. I am really thrilled to be a part of this important initiative and I and my team are drawing insight from this project every day.

Another of the leaders on our Quality Improvement Initiative is Laura Marsh, MD, of the Houston VA. She specializes in mental health and Parkinson’s and has focused on the evaluation of depression in Parkinson’s disease. This month she published the long-awaited Methods of Optimal Depression Detection in Parkinson's Disease (MOOD-PD) study. This study compared 9 depression scales and made recommendations for use in Parkinson’s disease.

The most important finding was that depression is more common than many thought. She recommends that doctors always screen for depression in Parkinson’s disease patients because it can be well managed, but when it’s not identified, it can affect everything in a patient’s life. Interestingly, the depression screening on the commonly used Unified Parkinson’s Disease Rating Scale performed the worst, and was not recommended for use in screening patients. All other scales performed well. The authors stressed that depression screening should be part of the routine evaluation in Parkinson’s disease patients.

In conclusion, as we strive for better quality of care, we will need to improve our ability to measure quality and to select bedside tests that can help us to better optimize the management of all Parkinson’s disease patients. The Parkinson's Foundation Quality Improvement Initiative Study and the MOOD-PD study are two important steps in this direction.

Selected References

1. Okun MS, Siderowf A, Nutt JG, O'Conner GT, Bloem BR, Olmstead EM, Guttman M, Simuni T, Cheng E, Cohen EV, Parashos S, Marsh L, Malaty IA, Giladi N, Schmidt P, Oberdorf J. Piloting the NPF data-driven quality improvement initiative. Parkinsonism Relat Disord. 2010 Sep;16(8):517-21. Epub 2010 Jul 6. PubMed PMID: 20609611.

2. Williams JR, Hirsch ES, Anderson K, Bush AL, Goldstein SR, Grill S, Lehmann S, Little JT, Margolis RL, Palanci J, Pontone G, Weiss H, Rabins P, Marsh L. A comparison of nine scales to detect depression in Parkinson disease: Which scale to use? Neurology. 2012 Mar 14. [Epub ahead of print] PubMed PMID: 22422897.

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.

For more insights on this topic, listen to our podcast episode “Staging PD – UPDRS: What it Measures and What Your Score Means”.