An Inside Look at Parkinson’s Disease Care Partners
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 would like to change that.
Dr. Klos is a movement disorders physician in Tulsa, OK where he has close ties to the APDA Oklahoma Chapter. He has 20 years of experience taking care of people with PD and educating families, and has a particular interest in understanding the challenges of caregiving in PD. 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. His main message is that care partners, despite all their misgivings, generally do an excellent job. I sat down with Dr. Klos for a conversation about caregiving.
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: In my practice, I see my patients progress in their disease slowly over the years. The care partner role became more and more dominant with time.
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.
I practice in Tulsa, OK, and in the past there has not been a lot going on locally for care partners. What I saw happening for example, was that an impromptu caregiving support group would develop on the side as the boxing class for people with PD was going on. There was clearly a need for care partners to learn more about caregiving from each other. 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: About seven years ago, 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.
The surveys were not focused on the