Pilot Evaluation of a Virtual Intervention for Caregivers of Persons with Lewy Body Dementia (LBD) (Preprint)

BACKGROUND Compared to other types of dementia, family caregivers of people with LBD report higher stress and more severe depressive symptoms. OBJECTIVE We performed a pilot evaluation of a digital intervention designed to help caregivers address challenges that they have experienced, with the end goal of reducing psychological distress in this population. METHODS We recruited 15 family caregivers to participate in the quasi-experimental single-arm mixed methods study entitled VOCALE-LBD. The study offers an 8-week online intervention that uses a web-based discussion platform and involves moderation, peer-to-peer support, didactic training, and problem-solving skill enactment. RESULTS Participants’ baseline characteristics were as follows: Mean age (SD)= 66(8); 93% female; 100% White; and 53% had at least a post-graduate degree. Throughout the intervention, participants engaged in weekly online discussions, generating a total of 434 posts (average 4 posts/week). Attrition was 20%. At the study exit, participants showed improvements in depression, burden, stress, and loneliness. When we calculated differences in the proportion of participants with clinically significant improvement versus worsening of 0.5 SD or more for each outcome, we observed net improvements of 50%, 33%, 25%, and 25% in depression, loneliness, burden, and stress, respectively. When we assessed the benefits of participation, 75% of the participants reported that participation helped them to improve their understanding of LBD ‘a great deal,’ vs. 25% selecting the ‘some’ response option. Similarly, in response to a question about confidence in dealing with difficult behaviors of the care recipient, 50% of the participants selected ‘a great deal’, 42% ‘some’, and 8% ‘not at all’ response options. Finally, in response to a question about improvement in one’s abilities to provide care to the care recipient, 33% of the participants selected ‘a great deal’, 58% ‘some’, and 8% ‘not at all’ response options. CONCLUSIONS The study generated promising feasibility and efficacy data for a low-cost, online intervention designed for caregivers of persons with LBD. As the study was not powered for significance, we observed nominal average and net improvements in important psychological outcomes. Moreover, many caregivers reported that study participation helped them better understand the disease, feel more confident in dealing with difficult behavior of the care recipient, and improved their ability to care for the care recipient. If validated in future studies, the intervention could be an accessible, on-demand resource for caregivers to engage in moderated remote discussions with peers at their own convenience in terms of location, time of day and frequency. As far as pragmatic considerations, the intervention could be used in conjunction with caregiver usual care and as a stand-alone module in circumstances, such as current and future pandemic emergencies, when professional interventions in general and subspecialty care in particular might not be readily available.