PSBC staff and clinical counsellors, Courtney Doherty and Myriame Lépine Lyons, answer questions about mental health to support awareness and reduce stigma.
1. What are some common mental health challenges faced by people with Parkinson’s disease (PD)?
The mental health challenges faced by people with PD vary widely based on several factors, including the stage of PD (e.g., newly diagnosed vs. later stages), one’s support system and the individual’s mental health history – to name just a few.
As clinical counsellors, some of the more common mental health challenges that we see faced by people with PD are:
- grieving the loss of one’s identity
- feeling lonely and lost after a diagnosis
- worrying about what others may think of them now
- feeling distraught about the future
- not knowing how to move forward after a diagnosis
These challenges are also known as grief, depression and anxiety. Other mental health challenges that can occur, but are not as common, include: difficulties with impulse control, hallucinations, paranoia and trauma.
2. What are some ways friends and family can support people with mental health challenges?
While family carepartners, caregivers, relatives and friends can act as valuable sources of support, it is important to recognize that they are not trained mental health professionals. Seeking professional help may be necessary in certain situations.
Education is a major way that family and friends can support their loved ones with Parkinson’s disease. Learning about the disease is essential to cultivating a supportive environment. The Society offers many learning opportunities to get familiarized with Parkinson’s terminology, symptomology and treatment, many of which are available at www.parkinson.bc.ca/resources-services.
Once a basic understanding of Parkinson’s disease is established, it is equally important to listen to what is actually going on for the individual with Parkinson’s, rather than generalizing, ignoring or minimizing their situation. When family and friends understand how the disease impacts their loved one, they are able to build greater empathy for that person as well as offer more effective support. It is also important to recognize when challenges may be beyond one’s capacity and to seek other sources of support, such as counselling or support groups, when needed. Attending a Parkinson’s support group can be very beneficial to know that no one is alone on their journey and to learn what has helped others dealing with similar challenges.
Increasing communication about mental health is another way to effectively support loved ones with mental health challenges. Carepartners, relatives and friends are often eager to “fix” the person with PD and so find themselves helping with activities of daily living (e.g., putting on a coat or buttoning up a shirt). Sometimes, this is unnecessary and could hinder the individual with PD, who may not want this type of help. It is important for family and friends to ask the individual with PD what they need and listen to them. Listening to others can be empowering to all parties involved and can provide a foundation to move forward, together.
Another way that friends and family can show their support is by exercising patience, as well as empathy and compassion, for their loved one with Parkinson’s and for themselves. Carepartner burnout is real; developing patience, empathy and compassion can help family and friends to avoid burning out, enabling them to provide support on a long-term basis. As counsellors, we see the difference in clients who choose to develop these capacities for their loved one and themselves. They are often more grateful, relaxed and grounded.
3. What are some actions/phrases friends and family should avoid when communicating with people experiencing mental health challenges?
Most of us want to be helpful when we know a loved one is dealing with mental health challenges. However, we often struggle with what to do and say that will actually be supportive. Here are some of the actions and phrases that should be avoided, as they tend to cause more harm than good.
“Just snap out of it already. You shouldn’t be depressed because you have PD.”
Not only does this phrase minimize the issue at hand, it is demeaning. Minimizing a loved one’s mental health challenges closes the door for any future support opportunities and enables silence. The person can become more isolated, withdrawn and alone. Instead say something like: “I’ve learned that depression can affect many with PD. How can I support you best?” This understanding phrase opens the door for communication and support.
“You’re dealing with a lot of stress right now. You’ll feel better soon.”
At first this phrase appears to help, however it also minimizes the stress that the person is experiencing. Instead say something like: “It sounds like you’re having a difficult time, which is understandable. Maybe we can go for a walk and chat about what options there might be for you to move through this?” This phrase offers a healthy distraction (walking) and a safe place to brainstorm an action plan for easing the stress or anxiety (Everyday Health, 2018).
“I know what you’re going through.”
This phrase is simply inaccurate as it is not possible to know the exact experience of another person. Instead say something like: “I can only imagine what you’re dealing with. Is there any way you can help me to understand more?” This empathetic phrase demonstrates support without requiring someone to have experienced another's circumstances. Being empathetic is the ability to understand or feel what another person is experiencing from within the other’s frame of reference. We do not need to take on their feelings, but rather be there to witness and hold space for it.
4. Can you describe the type(s) of counselling offered by Parkinson Society BC?
PSBC offers short-term counselling services (approximately 5-8 sessions) to tackle the most pertinent issues that an individual is facing. As mentioned, these are often grief, depression and anxiety. Other challenges that clients bring to counselling are relationship struggles, panic attacks, hallucinations, impulse control problems, and inadequate coping strategies. If long-term counselling is identified as being beneficial, the individual(s) will be referred to other resources. Counselling is a very individualized process and clients can expect a tailored approach. As counsellors we use evidenced-based approaches (e.g., Cognitive Behavioural Therapy, mindfulness, solution-focused) where appropriate.
5. Why is it important for the Parkinson’s community to have access to counselling?
Parkinson’s disease is can be a very challenging and complex condition. People with Parkinson’s and carepartners alike are often greatly impacted and may experience grief, depression and anxiety. Access to counselling is important because it provides a safe space to explore challenges, establish a support network, and to gain coping strategies to move forward.
6. Is there anything else you would like to add?
Brené Brown is a professor at the University of Houston and expert on courage, vulnerability, empathy and shame. She says: “Courage is contagious. Every time we choose courage, we make everyone around us a little better and the world a little braver.” It takes courage to chat about mental health, regardless of whether or not these conversations happen in a clinical setting.
View a video narrated by Brené that explores the difference between empathy and sympathy: https://youtu.be/1Evwgu369Jw
Brown, B. (2018). https://brenebrown.com/
Everyday Health. (2018). 7 Best and Worst Things to Say to Someone with Depression. Retrieved from: https://www.everydayhealth.com/depression-quiz/what-to-say-what-not-to-say.aspx