Episode 27: More Than Movement: Addressing Cognitive and Behavioral Challenges in Caring for PD

Dan Keller 00:08

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Aside from motor symptoms, people with Parkinson's and their care partners often face cognitive, behavioral, and emotional challenges. Addressing these troubling symptoms can be daunting for both clinicians and the people they treat because of misinformation, fear, and stigma. People with PD may be reluctant to discuss them, and physicians may not have enough time during a clinic visit to ask about them. Dr. Jennifer Goldman saw a need for an approach that addresses neuropsychiatric aspects as well as motor symptoms and therefore set up an integrated cognitive behavioral movement disorder clinic at Rush University Medical Center, a Parkinson's Foundation Center of Excellence. We discuss the kinds of non-motor symptoms that some people with PD experience and how she and her team deal with them.

Dr. Jennifer Goldman 01:39

These non-motor symptoms range from affecting areas such as cognition, or thinking and memory, to mood and behavior, to also other areas such as sleep and autonomic function, and even elements like pain and fatigue. They vary in how common they are in Parkinson's disease, but in the course of the illness, many patients can be affected by them, and at different degrees.

Dan Keller 02:10

Do patients often experience constellations of these, or do they come on one at a time? And how different are they from patient to patient?

Dr. Jennifer Goldman 02:18

So among the non-motor symptoms, I'll focus a little bit on those that affect cognition and mood and behavior aspects, although we recognize that these can be tied into other non-motor features, such as sleep and fatigue and even things like low blood pressure or other non-motor symptoms. Sometimes they can occur together, but at other times, these symptoms can occur separately. For example, some patients, even before they have the motor symptoms of Parkinson's disease, can experience mood changes like depression and anxiety as well as sleep disturbances. And some of these can even go back years before someone presents to a doctor's office with changes in their walking or tremor. And other times, we can see the development of different types of non-motor symptoms and neuropsychiatric symptoms throughout the course of Parkinson's. So some of these may occur later in the stages in more advanced Parkinson's disease, such as greater cognitive impairment or a syndrome that we call dementia, when patients have had significant changes in their cognitive abilities and it has impacted their function in everyday life.

Dan Keller 03:43

Are patients adequately prepared for these sorts of changes? Do they just think it's a movement disorder?

Dr. Jennifer Goldman 03:50

Well, for many years, the emphasis in Parkinson's disease has been on its motor features, so its cardinal features of tremor or slowness, stiffness, and changes with walking. But in more recent years, in particular, there's been a shift to recognizing that patients can experience these non-motor symptoms and neuropsychiatric symptoms, either individually or in combination, throughout the course of their Parkinson's disease. We've also come to recognize that, for example, cognitive complaints or challenges with things like attention or multitasking—juggling more than one activity at a time—can occur even early in the course of Parkinson's disease. It may be mild. People with Parkinson's disease can recognize it as well.

Dan Keller 04:51

How can people prepare for these sorts of changes? Who is a good resource?

Dr. Jennifer Goldman 04:58

It's really important to have an open dialogue as a person with Parkinson's disease with their caregiver and family, as well as with their healthcare provider. Many times we hear from people with Parkinson's that they wish they had known about some of these features, and although they may be scary to talk about or potentially associated with fear and stigma, as many mental health issues can still be, they're important to discuss early and often. Sometimes symptoms can be aggravated by certain medications, and therefore it's important to talk to one's physician or healthcare provider about medicines, because they can contribute to cloudiness of thinking or sleepiness, or even psychosis, where patients have hallucinations. As a healthcare provider, I routinely ask my patients that I see and their families about these types of symptoms. Many of the symptoms, for example affecting mood like anxiety or depression, are very treatable, and we have a number of medications and non-medication therapies or counseling that can be effective. There are also medications that have been approved for treating dementia and psychosis in Parkinson's, and they may be helpful in some patients.

Dan Keller 06:30

What's the hope for the future? Is there research going on in these areas? Is there more attention to it than there had been in the past?

Dr. Jennifer Goldman 06:38

With a greater recognition that these problems or challenges can occur in Parkinson's disease, in the last decade and more recent years, there has been an extraordinary amount of attention being paid to them. This has helped us advance our research to understanding why people with Parkinson's may develop issues or changes with their thinking and memory, mood, and other behavioral elements. With this research, we've begun to understand some of the mechanisms—what goes on in the brain and in the body—with other biomarker studies, and it has led us to develop and design clinical trials for new therapeutics to address these symptoms. There's also been a great interest and growing interest in non-pharmacological ways to help people with Parkinson's who are having thinking and memory problems or changes in behavior. Some of these include physical exercise and cognitive exercise, and we are seeing that those can play an important role in the alleviation of symptoms and management of the symptoms in patients. In addition, the social settings in which many times these therapies occur can also be really good for helping people cope with cognitive and behavioral changes.

Dan Keller 08:14

Is there anything we've missed or important to add?

Dr. Jennifer Goldman 08:18

It's important always to keep in mind that people with Parkinson's are very individual, and while these cognitive and behavioral challenges may be very daunting and may only affect some patients, we recognize that each person really needs to have an individualized care treatment program, and this is best accomplished with the person with Parkinson's and potentially their caregiver or family member working hand in hand with their healthcare team.

Dan Keller 08:53

I think you bring up a good point of a healthcare team. This doesn't all just fall on the physician, does it?

Dr. Jennifer Goldman 09:00

No, the healthcare team taking care of a person with Parkinson's disease is actually really broad. So not only might it include the neurologist, and in particular a movement disorder specialist, but other members, and these other members are vital to the care of a person with Parkinson's. They include people who work in allied health professions such as physical therapists, occupational therapists, speech therapists, nutritionists, social workers, and neuropsychologists and psychiatrists. Working as a team advances the whole care of the patient and their loved ones. Greater good can come from having more members on the team who work together hand in hand.

Dan Keller 09:55

And do they coordinate regularly?

Dr. Jennifer Goldman 09:57

A core element of a team approach is being able to work hand in hand with each other and discuss what each specialty brings to the table. Movement disorder specialists notice different things from what the social worker and physical therapist might, as well as the nurse. And so in order to have comprehensive care, each of these team members brings their assessments and strengths to bear on determining what steps might be needed in the care of the patient.

Dan Keller 10:33

Pretty good. I appreciate it. Thanks.

Dan Keller 10:42

The integrated cognitive behavioral clinic at Rush University sees people with Parkinson's and their caregivers from anywhere in the country for a comprehensive assessment. People living within commuting distance can choose to continue receiving care at Rush. If they come from farther away, they'll receive their assessment, a treatment recommendation, and a referral to a clinic and doctor closer to home. To find out more about cognitive, behavioral, and emotional challenges in PD, visit our website at parkinson.org or call our toll-free helpline to speak with the PD information specialists who are here to answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. And remember to check our social media channels for special activities related to Parkinson's Awareness Month going on through April. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO—that's 1-800-473-4636. Thank you for listening.