Lewy body dementia (LBD) is the second most common form of neurodegenerative dementia. LBD is an umbrella term that includes individuals with Parkinson’s disease (PD) who later develop dementia and individuals with dementia with Lewy bodies, a condition in which cognitive and neuropsychiatric changes can precede the same movement symptoms of PD. LBD has unique symptoms that lead to more frequent hospital visits, shorter survival and increased strain of family caregivers compared to other forms of dementia such as Alzheimer’s disease or vascular dementia. However, no current, effective interventions exist for people with LBD (PLBD) or their caregivers.
The overarching goal of this National Institutes of Health-funded study is to determine whether a practical, LBD-specific educational intervention delivered by trained and experienced LBD caregiver peer mentors can 1) improve the well-being of current LBD caregivers and their care recipients; and 2) provide a successful framework for harnessing the knowledge of expert caregivers to support future caregivers in LBD and other dementias.
What’s the current problem?
Caregivers of PLBD experience an array of challenges in their role providing care for their loved ones. Lewy body dementia affects at least 2.4 million people in the U.S. and is associated with cognitive, motor and neuropsychiatric symptoms yielding higher morbidity and mortality than Alzheimer’s disease.
Moment to moment and day by day, PLBD can experience and display a sharp contrast in how they perform from cognitive, movement and behavioral perspectives. For instance, a PLBD may have no trouble walking around their block or going to the gym one day but struggle to even do their morning routine the next day. They may respond normally when an out-of-town guest visits but then have cognitive challenges, such as confusion, disorientation, agitation or hallucinations, once the guest leaves.
Caregivers are taxed in taking care of their PLBD, and the effects of around-the-clock care tend to build up and pose a chronic strain on the caregiver. For instance, PLBD experience multiple sleep disorders, often acting out dreams during sleep and kicking or thrashing without realizing it. Such incidents may wake or even injure their caregiver, sometimes multiple times per night. PLBD may also wake to use the restroom throughout the night, needing assistance from their caregiver to make it to and from the toilet safely. The side effects of losing sleep pose a challenge the following day when the PLBD needs help with daytime activities and the caregiver is struggling with stress and fatigue.
As a result, LBD caregiver strain 1) exceeds that of non-LBD dementia caregivers; 2) worsens caregivers’ physical and mental health; and 3) independently increases the risk of PLBD being hospitalized or placed in a nursing home. While considerable research has been done on the burdens and health consequences faced by dementia family caregivers, there has been minimal work focused on LBD caregiving where the needs for caregivers and patients are greatest. Additionally, the few interventions found to be effective for dementia caregivers — typically for Alzheimer’s disease — are costly and not widely available. Paid caregivers are not covered by insurance and are thus unsustainable out-of-pocket expenses for LBD patients and their families. Additionally, paid caregivers have high turnover rates and typically have minimal to no training in dementia in general, LBD, PD or end-of-life care.
Finally, PLBD have frequent emergency department visits and hospitalizations, most often caused by falls, infections, dehydration and neuropsychiatric symptoms. Given their relationship and proximity to PLBD, caregivers are uniquely positioned to identify and manage these issues early, potentially avoiding emergencies and complications. However, many caregivers lack the knowledge, skills, confidence, resources and support to do so.
Building on prior studies
One form of caregiver-focused intervention that has shown promise in non-LBD populations is peer mentoring. In these interventions, experienced caregivers for a loved one with cancer, for example, serve as mentors to family members whose loved ones were recently diagnosed. Mentors can share the knowledge and lived experience they have gained, providing their mentee with a figurative shoulder to lean on from someone who truly understands what the cancer caregiving journey is like. Peer mentoring interventions vary in population, whether a specific curriculum or framework is used, frequency and duration of calls or meetings between caregivers, and the outcomes measured.
At Rush, we first tested the peer mentoring concept with a group of caregivers of people with advanced PD. We matched an experienced or past caregiver with someone currently caring for their family member with advanced or late-stage PD. Peer mentors spoke with their mentee by phone weekly to share advice, listen and respond to the mentee’s questions. Mentors and mentees enjoyed the process and relationships and were interested in having a curriculum and resources available to learn more about their loved one’s condition. As a next step, we expanded the mentoring program to a national pilot, conducted entirely virtually, with 30 new mentor-mentee pairs and a resource-rich curriculum to guide pairs through conversations covering key LBD symptoms and key sources of caregiver strain. Once again, satisfaction and participation were very high, and in this second study, both mentors and mentees improved their LBD knowledge. Mentees also felt more confident caring for their PLBD after 16 weeks and half of mentees wanted to “pay it forward” and become mentors themselves. Participants requested adding even more underrecognized LBD symptoms and concerns to the curriculum and creating a web-based platform for easy access to reliable LBD topics anytime.
What does this study aim to do?
The new PERSEVERE study is the culmination of all the pilot work that has come before, driven by LBD caregiver input and community engagement at every step along the way. Our long-term goal is to improve PLBD outcomes by leveraging and creating a pipeline of knowledgeable, supported family caregivers as interventionists. We believe that peer mentor-delivered LBD education and support will improve caregiver strain and its mediators, along with PLBD health outcomes, compared with usual care.
The PERSEVERE study has three aims:
- Quantify the impact of the PERSEVERE program on caregivers receiving the full intervention — including weekly discussions with a trained peer mentor and access to the digital and mobile curriculum — on caregivers’ knowledge, attitudes, mastery and strain, compared to caregivers who receive only weekly emailed resources (the control group), measured both immediately upon completing the 12-week intervention and in follow-up six months later.
- Understand the factors that encourage participation and success in peer mentoring, including characteristics of both peer mentors and caregivers.
- Evaluate the extent to which this caregiver-focused intervention improves quality of life, emergency department visits, hospitalizations and mortality among the caregivers’ PLBD.
We believe that a theory-driven, iteratively tested, LBD-specific intervention delivered by trained caregiver peer mentors can have a positive and sustainable impact on the lived experience of both caregivers and PLBD. Our team’s overall hope is that by leveraging this untapped, experienced and motivated group of LBD caregivers, we can create a durable intervention that can help future LBD caregivers and PLBD manage the devastating disabilities of this condition. PERSEVERE is open for enrollment and looking for both current caregivers to a loved one with PD and dementia, dementia with Lewy bodies, or LBD. We are also looking for past caregivers for a loved one with these conditions who may be interested in serving as mentors.
How can I enroll or refer LBD caregivers?
For more information, to watch a video about the study logistics and enrollment criteria, and to complete the screening survey, please visit https://redcap.link/PERSEVERE1.
If you have any questions about the study or would like to enroll interested caregivers, please email persevere@rush.edu.
