Online group support for family carers in Lewy body dementia- does it work?
Parallel 6
18 November, 2026 3:30 – 4:40 pmFamily Carer Wellbeing
Rachel Thompson
Consultant Admiral Nurse, Lewy body dementia
Lewy Body Society & Dementia UK
Rachel Korosi
Admiral Nurse, Lewy body dementia
Dementia UK
Summary
The need for tailored, carer support is particularly acute for those caring for someone with Lewy body dementia (LBD), a condition whose complexity creates distinctive and largely unmet needs. LBD is the second most common type of neurodegenerative dementia accounting for ~15-20% of all dementias although often clinically underdiagnosed. It includes both Dementia with Lewy bodies and Parkinson’s disease dementia with both conditions sharing complex symptoms including hallucinations, fluctuations in cognition, REM sleep behaviour disorder and parkinsonism. Carers of people with LBD report higher stress levels and more severe depressive symptoms than carers of those with other dementias. The information and support needs of this group are also different compared to other types of dementia due to the variability and complexity of symptoms, with families reporting that relevant information and support is often lacking. The availability of specific psychosocial interventions for people with LBD and their carers has been found to be limited. However online delivery offers one promising route to addressing this gap.
Technology-based interventions are increasingly used in healthcare including family carer support and show promise in offering flexibility, wider reach and positive outcomes. However, drop-out is often high particularly when self-directed. In contrast, interventions which include interactive features and personalised strategies for specific types and stages of dementia appear to have significantly lower dropout.
A promising approach is an online group programme, developed for family carers of LBD supported by a specialist Admiral Nurse service Evaluation of the service highlighted the importance of specialist knowledge and expertise in enabling family carers to better support their relative with LBD. The programme aims to increase understanding of LBD symptoms, developing positive coping strategies, facilitating mutual support and promoting self-care. It has been informed by evidence-based interventions including psychoeducation, Cognitive Behavioural techniques (CBT), development of coping strategies and self-care strategies as identified in the STrAtegies for RelaTives (START) programme and Acceptance and Commitment Therapy (ACT). Internal evaluation used pre-and-post wellbeing measures and online surveys to gather feedback about impact, content and delivery. This demonstrated the intervention was seen as acceptable and made a positive difference to coping and wellbeing; plus significant improvements in mental health wellbeing were observed.