Helping Caregivers Learn to Persevere
As we head into the holiday season and turn the calendar to December, many people may not realize that November was Family Caregiver Awareness Month! This designation recognizes the tremendous contributions that caregivers make to the lives of their loved ones. Caregivers are unsung heroes—especially in the case of Parkinson’s Disease (PD) and Lewy Body Dementia (LBD). More than 83% of people with PD and LBD rely on unpaid caregiving from family members, which totals 18.5 billion hours of care annually. Compared to caregivers of loved ones with Alzheimer’s Disease, PD and LBD caregivers have higher rates of caregiver strain, burden, and depression. Researchers believe this is because PD and LBD cause changes in movement, memory and thinking, psychiatric, and non-motor symptoms, and symptoms can vary tremendously and unpredictably from moment to moment and day to day.
As a movement disorders neurologist, I meet with PD family caregivers each day who are encouraging their loved ones to exercise, take their medications on time, eat well, and stay social. However, as their loved ones’ disease progresses, it can be hard for many PD caregivers to provide all the care that’s needed 24/7, especially if the person is working or has other caregiving responsibilities. My heart breaks each time a caregiver sighs and says, “Ok, I’ve reached the end of my rope. Can you send someone to help me in the home?” While healthcare systems vary, paid caregiving is not covered by insurance in the US (including Medicare or hospice) and can be upwards of $30/hour out of pocket. These costs are impossible to manage for many people, and even those who can afford paid caregivers often find that they may know very little about PD. What’s a PD caregiver to do?
Our research team began asking that question several years ago when we were conducting home visits for people with advanced PD and related disorders. We found that bringing a nurse, social worker, and movement disorders neurologist to the homes of people with PD and their caregivers could stabilize quality of life and keep people in their homes for longer. However, home visits alone were not enough to prevent caregiver strain from worsening. Taking a page from Alzheimer’s Disease, we wondered whether peer mentoring might help. Peer mentoring involves training someone who has gone through a particular life experience—like caring for someone with PD—and asking them to mentor or coach someone earlier in the same experience. In the first pilot test of peer mentoring for PD caregivers, we trained 34 experienced caregivers as mentors. Mentees were caregivers to people with advanced PD enrolled in our yearlong home visit study. Each mentor was asked to call their mentee weekly for 16 weeks, offering a friendly ear and sounding board. The mentor-mentee pairs spoke an average of 11 times over 16 weeks for about 30 minutes weekly, with high satisfaction (91/100), and no worsening of caregiver strain over the yearlong home visit study.
The feedback from the first study was so positive that we were encouraged to test out peer mentoring as a standalone intervention. First, we conducted focus groups with caregivers to hear what would be most helpful. They asked for a curriculum to help guide the weekly calls, covering not only key symptoms in PD and LBD, but topics specific to caregivers. These included: how to handle tough emotions, like anger, guilt, and resentment; ambiguous loss and anticipatory grief; finding joy and humor in the journey; and planning for the future. We wrote a giant handbook including all these topics plus conversation starters and additional resources. We made the intervention fully virtual, partnered with Parkinson’s Foundation and Lewy Body Dementia Association to share study information widely, and trained 36 new mentors from across the US. We also asked mentors and mentees for their preferences in who they’d be matched with—almost like a dating app. Then we matched 30 new mentees with a mentor, gave them the handbook, and asked them to call each other for 16 weeks in a study we called “Learning to PERSEVERE”. Not only did they speak with each other (averaging fifteen calls lasting about 45 minutes each), but mentees and mentors improved their knowledge of, and confidence caring for, someone with PD & LBD. What was really exciting was that 90% of mentors said they’d do it again, and 50% of mentees were ready to train as mentors and pay it forward, helping other caregivers on their own journeys.
Beyond caregivers helping each other navigate the PD journey, we suspected that knowledgeable, confident caregivers might even be able to prevent falls and pick up on changes in their loved ones’ conditions earlier, possibly preventing emergency department and hospital visits. So, with additional rounds of caregiver feedback, we designed a national, entirely virtual, randomized controlled trial to test whether this handbook paired with peer mentoring not only helped caregivers, but could make a difference in the quality of life and experiences of people with PD themselves. With funding from the National Institutes of Health, this 600+ person study is now enrolling in all 50 US states and all US territories! Family caregivers will receive weekly educational guidance through a 12-week curriculum with resources and activities. All participation is virtual and scheduled when it works for you.
Who qualifies? If you identify as a family caregiver or care partner to a person with PD who is having changes in their memory or thinking, such as trouble with attention, concentration, decision-making, or visual changes, and/or is having hallucinations, you may qualify. If you care for someone who carries a diagnosis of PD Dementia, Dementia with Lewy Bodies, or LBD, you may also qualify. Finally, if you were previously a caregiver or care partner for a loved one with any of the above, you also qualify for participation!There are no in-person visits and the person with PD Dementia or LBD does not participate—just caregivers. Caregivers fill out online surveys and assessments at baseline and every two weeks throughout their involvement in the study, including a six-month follow-up period after the 12-week curriculum.
Interested in learning more?
Visit https://redcap.link/PERSEVERE1 to watch a video providing more information about the study and hear testimonials from prior PERSEVERE study participants.
Email persevere@rush.edu with questions and help us find ways to support and celebrate family caregivers all year round.
Acknowledgment: PERSEVERE is supported by the National Institute on Aging, and prior studies were supported by the National Institute on Aging, National Institute of Neurological Disordesr and Stroke, CurePSP, Parkinson’s Foundation, Doris Duke Charitable Foundation, and philanthropic support.
Jori Fleisher, MD MSCE FAAN is an Associate Professor of Neurological Sciences, Co-Director of the Rush Parkinson’s Foundation Center of Excellence, Director of the Rush Lewy Body Dementia Association Research Center of Excellence, CurePSP Center of Care, and Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic. She is a WPC connection: committee member.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®