The Emotional Side Effects of Cognitive Change
When I think about cognitive change and it’s impact on people with Parkinson’s disease and their care partners, I think about these two quotes.
“My place in the world is changing.” …. a person living with PD
“This is not the same person I married.” ….a care partner.
And while I have heard these sentiments expressed, perhaps with different words, the message is similar from many who are living with cognitive change.
One tricky part of dealing with cognitive changes is that it is sometimes hard to figure out what is PD and cognitive change, what is part of the aging process and what are behaviors related to the core personality of the person.
And the fluctuations that are common with PD make dealing with cognitive change tricky too, as the PWP can be clear and focused one day and then not the next, making it hard to know what is fair to expect from the PWP on any given day.
Regardless of the cause of the cognitive changes and associated behaviors, coping on a daily basis can be challenging and coping strategies are necessary.
Cognitive change can impact many areas of life, not just remembering when to take medications or what the plan was for the day. The PWP’s self esteem can be impacted as behaviors related to cognitive changes may be misjudged or negatively judged by others.1 Also, onset of cognitive change can lead to the need for difficult conversations about driving, financial management, medication compliance or accepting help. 2 And with challenges in communication, role changes, and care partner fatigue, cognitive change in the PWP can impact intimacy as well.3
The emotional side effects of cognitive change are many and can include feelings of loss and grief, shame and embarrassment, anxiety and depression. How one copes with any of these emotions varies greatly among people and is very dependent on you as an individual. It is valuable to reflect on who you are (temperament, psychological resources) and what are the supports available to you and then choose coping strategies accordingly.
Given that emotional wellbeing affects cognitive function, employing some non- medicinal mood managing strategies can be impactful. Mindfulness and relaxation techniques like yoga, cognitive behavioral therapy, counseling and exercise are valuable mood managing strategies as well as engaging in meaningful activities including volunteering and maintaining spiritual connections.
Participating in advance care planning can also be very valuable in coping with the emotions associated with cognitive change as many can feel empowered, gaining a sense of control by proactively planning for the future. Start to have conversations early on in the condition and put plans in place before a problem arises and in advance of the presence of cognitive issues. Have a look at www.theconversationproject.org or www.agingwithdignity.org or www.gowish.org.
It is also easier to cope overall if you are able to minimize or mediate some of the day to day challenges. Look at what some of the challenges might be and then what solutions exist. Simple solutions like sticking to routines, timing activities well and avoiding trigger situations can make a big difference in the day in the life of a PWP.
To the PWP, be kind to yourself and live within you abilities. To the care partner, meet your loved one where he/she is at, with expectations that are appropriate. To the health care team, be sensitive to the non-motor challenges and act as a resource for practical solutions and support.
Living life with a chronic condition is a journey, often one without a roadmap. As you navigate this journey, asking for help, emotional or practical, is not a sign of weakness, rather it is a sign of strength.
In his memoir, “Life in the balance”, Dr. Tom Graybos, a physician diagnosed with PD, wrote about the search for hope and courage when dealing with serious illness, including Parkinson’s Disease and cognitive change…. 'hope that things will get better, and the courage to move forward even if they don’t.'
If you would like to learn more about cognition and Parkinson’s Disease, consider reading “Cognition: A mind guide to Parkinson’s Disease” available through the Parkinson Foundation helpline at 1-800-4PD-INFO or www.parkinson.org.
1.) Angulo, Julio "Raising Awareness of PD Shame and Embarrassment" WPC Blog, October 2, 2017
2.) "I don't know what to say: Beginning difficult conversations" Parkinson's Canada, October 25, 2017
3.) Bronner, Gila "Personal Intimacy and Sexuality in Parkinson's Disease" WPC Blog, September 4, 2017
Elaine Book MSW. RSW is a member of the WPC 2019 Program Committee and has presented at the Fourth World Parkinson Congress in Portland, Oregon and the Third World Parkinson Congress in Montreal, Canada. She is currently the Clinical Social Worker and Centre Leader for the Parkinson's Foundation Center of Excellence, the Pacific Parkinson's Research Centre at the University of British Columbia in Vancouver, Canada.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®