Expert Voices: Caring for the Mental Health of People with Parkinson’s Disease

In this episode of our “Expert Voices” series, Parkinson’s News Today asked psychologist Amy MB Sullivan to answer some of your questions related to implementing integrative medicine in the care of Parkinson’s disease.

Sullivan is a clinical health psychologist and director of behavioral medicine at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research. Sullivan earned her doctorate at Argosy University in Atlanta, completed her internship at the University of Cincinnati, and earned a fellowship at the Cleveland Clinic in pain medicine. She specializes in mental health care for multiple sclerosis and is concerned with physician and caregiver self-care, burnout and psychological health.

Dr. Amy Sullivan cares about physician and caregiver self-care, burnout, and psychological health. (Photo courtesy of Amy Sullivan)

What mental health challenges are unique to living with a progressive illness?

I use Elisabeth Kübler-Ross’ adapted grief and acceptance work heavily with my patients, as these are patients who are dealing with a functionally, cognitively, socially, financially and emotionally disabling illness, sometimes at a very young age. age. This model theorizes that people move, in no particular order, through and between the different stages of grief (anger, denial, depression, negotiation, and acceptance/coping). Life without chronic disease is difficult; living with a chronic illness adds another layer of complexity.

What do you wish more doctors realized about the mental health challenges of Parkinson’s disease?

The high prevalence of mental health disorders in people with chronic conditions, particularly in relation to people with Parkinson’s disease, with up to 60% of patients suffering from depression during the course of the disease. This means that there are likely many contributing factors, one being adaptation to illness and functional changes. Another could be drug-induced mood disorders, and another is probably structural changes in the brain.

I wish they would screen for mental health issues. Prior to all appointments at the Mellen Center, our patients are screened using the PHQ-9 [questionnaire]. This is then pre-populated into their electronic health record note, and we can gauge mood over time. Providers are able to assess their mood and can choose to treat the patient or refer them to our behavioral medicine team.

How can caregivers help a loved one who is experiencing loneliness due to social avoidance related to their diagnosis or symptoms?

Listen and show empathy. Do not judge. Communication skills are important for all relationships, and even more so with a relationship that now has the unwanted guest of a chronic illness. Caregivers must remember to take care of themselves and be able to communicate effectively with the person they are caring for.

Parkinson’s disease can make a person feel like a burden. What advice do you have for a patient who fears expressing new limitations, such as those caused by fatigue, to their loved ones?

If one is in a relationship of trust and security, expressing one’s thoughts or feelings is healthy. They also need to realize that the caregiver/loved one is likely going through their own changes and it is just as important to listen to them. Role reversal is common: a person who was a household partner is now back at work and a person who was in the workforce is now in the household role. All of this is difficult and it is important that each party listens and shares their feelings.

What advice would you give to someone who feels compelled to be “tough” with their family and not show the toll of the disease on their psyche?

I think it’s really hard. I always encourage patients to be comfortable sharing their emotions, but that also depends on having the right support system in place. It is essential to have this communication between patients and caregivers.

Many who have suicidal thoughts feel that they will not be able to overcome these thoughts. How do you respond to that?

Get help immediately. Suicide is no joke. Sometimes it is important to have a space between the stimulus and the response. Thoughts can be fleeting and we need to take a minute to get that space.

It is often said that we have to deal with things like diagnosis and medical disappointments. But what does the treatment really look like, in practice?

It looks like the flow of experiences, thoughts, behaviors, and feelings, and how those experiences can change as information is accessed from different channels. The process will be different for each patient, and we need to recognize each individual’s needs and how they deal with the stages of their disease.


Expert Voices is a monthly series featuring a Q&A with an expert from the Parkinson’s space on a specific topic. These topics and questions are selected from a survey in which we ask readers what they would like to learn more from experts. If you would like to submit topics or questions for consideration in an upcoming episode of the series, click here to take the survey.

News about Parkinson’s disease today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website.

Expert Voices: Caring for the Mental Health of People with Parkinson’s Disease

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