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 medical details of PD, but rather tried to get to the heart of the caregiving experience. The people with PD were asked:  What do you need from your care partner? What parts of caregiving is your partner doing well? What parts is your partner not doing well?

The care partners were asked: How would you grade yourself as a caregiver? What do you do well and what do you not do well?

Q: What did you discover?

A: What I found can be summarized in the title of the book that was just published based on the information I gathered: You are a Better Parkinson’s Disease Caregiver Than you Think. 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.

I also found that, not surprisingly, care partners need that confirmation that they were doing a good job.

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 am not seeking a sponsor or a way to monetize it –I just 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. One, for example, will be about the decision to move a loved one to a nursing home. There are many out there who struggle with this and it is very helpful to hear the perspectives of others and how they reached their decisions.

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, and APDA has a number of other excellent resources for them including:

Becoming a Care Partner:

This educational supplement is a great overview full of useful guidance for all PD care partners, including tips for taking care of yourself as well as a helpful list of resources for additional information and support.

A Conversation with a Care Partner:

In this episode of Dr. Gilbert Hosts, I talk with Lianna Marie, a trained nurse, PD care partner, PD advocate and author, for an insightful and personal conversation about navigating care for people with PD.

Care Partner Perspectives:

Being a care partner for someone with PD can be a whirlwind of challenges, responsibilities, setbacks and victories. Here, three care partners bring their unique perspectives to our readers who might be grappling with similar issues.

Tips and takeaways

• Kevin Klos, a movement disorders physician in Tulsa, OK, shared with us his perspective on PD caregiving, both as a physician and son of a person with PD.
• His main message is that PD care partners are often more successful in their role than they think.
• Care partners are a critical part of the PD team and APDA has resources to support and help you in this challenging but rewarding role.