I know that for most of my patients with Parkinson’s disease, one of the keys to success is a fully engaged caregiver. Caregivers play an important role in helping their loved ones cope with the impact of the disease and the complexity of home-care regimens. Caregiving is not easy and it can be more than a full time job. It is always hard for a spouse-caregiver to watch increasing disability in their once-vibrant partner. Helen Keller’s caregiver, Anne Sullivan, once said, "I cannot explain it, but when difficulties arise, I am not perplexed or doubtful. I know how to meet them." A new study from the Parkinson's Foundation is highlighting just how important the caregiver is.
In our Parkinson’s Outcome Project, we have assembled the largest longitudinal cohort of Parkinson’s disease patients ever assembled in a clinical study. We have been collecting a measure called the multi-dimensional caregiver strain index on all of the spouses and caregivers in the study, and we have learned that recognizing and treating caregiver strain is critical.
We took the data we collected and asked, how can we show the importance of the caregiver to a person with Parkinson’s and how can we show the dramatic impact of being a caregiver on the people thrust into this role? To understand this, we decided to look at situations where the caregiver changed. How hard was it to be thrust into the role of being a caregiver in the middle of the course of a patient’s disease?
We expected to find that caregiver strain was higher for new caregivers, and we did. When a patient changed from having his or her spouse as caregiver to having another family member, the caregiver strain increase was 20 points higher that it was a year earlier when the spouse was the caregiver. For patients where the spouse stayed the caregiver, the change was just 5 points. In this 72 point scale, this 15 point difference is 20% of the way from no impact at all to intolerable strain, and is quite serious.
However, we noticed some other factors: Patients who switched from having their spouse as their caregiver to another family member also suffered worse health. They got sicker (they were more likely to move up the Hoehn and Yahr scale), they reported worse health on a health status questionnaire (the PDQ-39), and they suffered slower mobility that we measured in our clinics.
We realized that not only do experienced caregivers have well developed coping skills, but they also provide better care and better health to their loved ones.
In another study, Tanya Simuni at the NPF Center of Excellence at Northwestern University examined the impact that caregiver strain had on patients, also using data from our large Parkinson’s Outcome Project. She found that the better the patient reported their own health, the lower the caregiver strain. This was important because we also measured the patient’s disease clinically, and it was more patients’ perception of their health that determined strain than the clinical measurement of the impact of the disease.
This new evidence of the impact of caregivers has really shed new light on how I look on the concerned spouse who accompanies my patients to their visits with me. Caregivers are an integral part of care, and we found that a happy, knowledgeable caregiver not only is better able to cope with the stress of caregiving; he or she also is just as important as any other member of the care team. While I tell my patients what pills to take and encourage them to exercise, when the going gets tough it’s the caregivers who keep them fighting on, and it’s the caregivers who give them the encouragement and embody a reason to work to achieve the best lives they can. I’ve known this in my heart since I started treating people with Parkinson’s, but this important research will help us to prove that it’s true, and also to set a baseline to measure the things we do to make life better for people with Parkinson’s and their loved ones in the future.
You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.