Being a care partner for someone with Parkinson’s disease (PD) can be a difficult but potentially very rewarding role. Making it even more challenging is the fact that the role is assigned without consent of the care partner, without any training, and without the option of refusal. Care partners often lack confidence in their caregiving skills and are very unsure about whether they are performing their responsibilities adequately.
Dr Kevin Klos, author of You are a Better Parkinson’s Disease Caregiver Than You Think: What Every Caregiver Should Know and a movement disorders physician in Tulsa, OK, would like to change that. He has experience taking care of people with PD and educating families. This is informed by the fact that he is also a care partner for his mother, Judy, who has PD. He is committed to helping his fellow caregivers with education and support to guide them on their journey with their loved one.
Q: You are a movement disorders physician with more than 20 years of experience treating people with PD. What made you explore the topic of caregiving?
A: When my mom was diagnosed with PD, I gained a new perspective on being a care partner and I wanted to explore resources for care partners. I realized that there was limited information that was directed specifically to caregivers.
Caregiving is not a role that you ask for, or that you can train for. It is a role that is thrust upon you. I realized that I wanted to explore resources for care partners and expand the resources that were available. I started by researching the area of caregiving among my patients.
Q: How did you investigate caregiving in your practice?
A: I started a project in my own clinic, gathering information from both care partners and patients. I distributed comprehensive surveys and questionnaires, conducted anonymously during the clinic visits. Surveys from a care partner and person with PD pair, were linked. I also had my nurses extract information from the medical chart to couple it with the anonymized survey results, so we knew certain details about the person with PD, such as what stage of PD he/she was in.
Q: What did you discover?
A: People with PD typically rated their caregivers as A+. The same care partners were giving themselves terrible ratings. The caregivers were being loving and supportive, but they lacked confidence and feared that they were doing things wrong. So the overarching theme was “you are doing much better than you think” because the most important rater of the caregiver is the person with PD.
Q: How did being a caregiver for your mother inform your perspective?
A: I talk in the book about my mother’s cognitive challenges, and specifically her visuo-spatial difficulties that became apparent as she lost her ability to drive safely. This is something that many care partners face and it is a very difficult aspect of being a care partner. Having that personal experience has certainly made me more attuned to the experiences of my patients and their loved ones and has pushed me to explore this very important topic.
Q: How else are you looking to help care partners?
A: I am designing another way to help caregivers—through a podcast. I want it to be useful information for care partners from their peers who have already gone through some of the issues that they may be grappling with. The podcasts will be focused on different concerns. My first book was just released, which focuses on the perspective of the one who delivers the care. I envision a second book based on my surveys which explores the other side of the coin: what is the person with PD’s perspective as the recipient of caregiving?
We thank Dr Klos for his extremely informative perspective. Care partners play a tremendous role in the PD journey. Check out Dr Klos’ book, podcast, and resources from APDA to support and help you in this challenging but rewarding role.
