Depression, anxiety and other mood changes are common in Parkinson’s disease (PD). For some, these are the most bothersome aspects of the disease. They can worsen movement symptoms and make life less enjoyable. But mental health professionals, such as psychiatrists and psychologists, can help.
Mark Groves, MD, assistant clinical professor of psychiatry and neurology at Icahn School of Medicine at Mount Sinai Beth Israel in New York, says, “Unfortunately, there’s a stigma around mental health that we need to combat. People with Parkinson’s should not hesitate to open up and get the help they need.”
The Michael J. Fox Foundation for Parkinson’s Research (MJFF): Tell us about mood changes in Parkinson’s.
Mark Groves (MG): Mood symptoms and depression are part of the underlying disease. They are common in Parkinson’s and can precede onset or diagnosis by up to five years. Studies differ, but depression (of varying degrees) can happen in up to 50 percent of people. People may not recognize depression, which can look like changes in energy, motivation or sleep. And depression is the number one predictor of quality of life in PD — meaning depression has serious implications for how well a person lives.
MJFF: Who treats mood changes in Parkinson’s disease?
MG: There are different kinds of mental health professionals who can be important members of the care team. A psychiatrist has gone to medical school and can prescribe medication. Psychiatrists, nurse practitioners (and neurologists or movement disorder specialists) are the only providers who can prescribe medication. Some psychiatrists, like me, also do psychotherapy, or talk therapy. Then there are certain providers, such as social workers and psychologists, who only do psychotherapy. (They don’t prescribe medication.) So some people have a “mental health care team,” which includes a psychiatrist and a psychotherapist.
Sometimes a person’s movement disorder specialist can treat mood changes. But often it’s useful to have an initial evaluation with a psychiatrist to know if medication changes are an important part of the program, especially if there is serious depression with inability to function in daily life, suicidal thoughts or psychotic symptoms (hallucinations or delusions).
MJFF: When should you see a mental health provider for Parkinson’s mood changes?
MG: My own bias is that there is an opportunity for most people with Parkinson’s who have mood changes to benefit from consultation with a mental health provider. But I understand that some people have discomfort with seeing a mental health provider, and they can be difficult to find. Around diagnosis especially, though, mental health providers can provide support around fears, thoughts and feelings that can be enormously helpful. The goal is always quality of life. So if a person is having difficulty adjusting, then they should have a low threshold for talking to their doctor about whether a mental health provider would be a helpful addition to their team.
MJFF: How, specifically, do mental health providers help with mood changes in Parkinson’s?
MG: For a person with depression and Parkinson’s, there are many different ways that we can improve well-being. One example is people thinking they won’t enjoy activities and not participating in them. Through cognitive behavioral therapy (CBT), we can help structure and enrich their schedule with simple activities. It’s a concrete strategy that demonstrates to a person that, even if they don’t look forward to activities, once they show up, they can enjoy them. Anxiety is another common focus of many treatment strategies, such as reframing catastrophic thinking patterns, learning relaxation techniques and sometimes careful prescription of medication.
When I meet someone with Parkinson’s, I begin by asking about their goals. Then, I look for all of the potential non-motor symptoms — motivation, energy, sleep problems and perception changes (such as hallucinations) — that can affect mood and quality of life. Together, through a collaborative approach that works to meet their goals, we address as many symptoms as possible. Treatments can include exercise, physical therapy, psychotherapy, medication or other strategies.
I also love to bring in care partners and spouses to occasional sessions, with the patient’s permission, of course. Care partners’ observations can give me a better understanding of the full range of symptoms affecting my patients as well as the benefits and possible side effects of treatments. Mental health providers often also will do counseling, individually or in a group setting, to help care partners. We can validate frustrations and needs and show care partners ways to take care of themselves so they can support their loved ones. Sometimes care partners assign themselves too much responsibility to help their loved ones and we can help them set realistic and balanced goals.
MJFF: Why is it important for people with Parkinson’s to see a mental health provider?
MG: Parkinson’s is a brain disease. And the brain is also the organ that affects emotion. So depression, anxiety and concentration changes — these can be core parts of the illness. This is different than an orthopedic condition, like a broken hip. It may be common to have emotional and psychological changes along with a broken hip, but those are not as likely to be due to biological changes in the brain. There also are psychological challenges in adapting to a disease like PD, such as the dilemma of disclosure to friends or the workplace, self-consciousness about symptoms, and the awareness that life is finite. Parkinson’s also can bring catastrophic thinking. We can help people chip away at these views, put things into perspective and live their best lives with new challenges.
MJFF: How do you find a mental health professional?
MG: Get a recommendation from someone you trust — your movement disorder specialist or primary care physician, a loved one or someone with Parkinson’s. (Ask at support groups, either online or in person.) Sometimes a recommendation isn’t enough, though, because of course you may need to use your insurance benefits and it often can be challenging to find someone who accepts your insurance or to navigate your insurer’s list of providers. You also should get a phone consultation or face-to-face appointment and feel free to not stay with the first person you see. Ultimately, you should feel comfortable, trusted, listened to and not judged.
MJFF: What advice do you have for working with a mental health professional?
MG: It’s critical when you see any provider to bring a full list of your medications or even all your bottles. And if there’s a care partner involved, it’s useful to allow them to provide their observations and concerns. You have full autonomy, but remember that it doesn’t help to not share fully and honestly what stresses you most. Openness is important, so make sure you are with a provider who offers feelings of safety, privacy and confidentiality.
Coordination of care is critical, too. Your movement disorder specialist or neurologist can be your care “team leader,” but you may see your mental health provider more often. It’s important that doctors talk on a regular basis, especially about medication decisions or changes. Patients can encourage that periodic conversation.
MJFF: Any other thoughts?
MG: For many people with PD, quality of life is more determined by emotional or non-motor symptoms than motor symptoms. And motor symptoms, such as tremor, can be amplified by non-motor symptoms, such as anxiety or depression. People should have a low threshold to consider an evaluation with a mental health provider if there are any mood or psychological symptoms. We have many tools, treatments and strategies to offer that can significantly improve symptoms and quality of life. Mental distress is not a weakness or character flaw and there is no shame in getting mental health care.