A qualitative study exploring the potential adaptation of DREAMS:START for people with Lewy Body Dementia or Parkinson's Disease

Introduction: Sleep disturbances are common in individuals living with dementia, especially those living with Lewy Body Dementia (LBD) and Parkinson’s Disease (PD). These disturbances are associated with increased depressive symptoms among carers and can precipitate transition to care homes. DREAMS:START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) is a clinically effective intervention for sleep disturbance in all-cause dementias. However, the experiences of supporting individuals living with LBD or PD and sleep disturbance remains unexplored. Therefore, this study sought to address this gap.

Method:  Semi-structured interviews were conducted with fifteen family carers of individuals living with LBD, or PD across the UK exploring the types of sleep disturbances, what previous support had been accessed, and reflections on DREAMS:START. The data was analysed thematically using NVivo 14.23.3. 
Results: Carers reported heightened fear at night related to specific disturbances such as REM Sleep Behaviour Disorder, hallucinations and night-time disorientation and wandering. This led carers to remain hypervigilant throughout the night, listening for signs of disturbance, with anxiety centred on increased risks of falls due to mobility changes. DREAMS:START was well-received by carers who valued the use of strategies and having somebody neutral to talk to. Suggested adaptations included the opportunity to engage with other carers, structured follow-up after completion and clearer guidance on how the condition may progress to support preparedness and future planning. 
Conclusion(s): Sleep disturbances in individuals living with LBD, PD or PDD are complex and multifaceted. Whilst DREAMS:START was deemed acceptable and many carers wished to take part, future optimisation could benefit from enhanced signposting to access information and support that is tailored to their specific needs and extends beyond the focus of sleep. Thus, better equipping carers to navigate the evolving challenges associated with these conditions.