Abstract
OBJECTIVES: Dementia with Lewy bodies is characterised by rapid fluctuations in attention, which are known as "cognitive fluctuations." Despite the fact that cognitive fluctuations are considered to be a core dementia with Lewy bodies symptom, they are very difficult to define and measure using existing quantitative subjective measurement tools, which are typically completed by caregivers. Cognitive fluctuations are also likely to be influenced by various aspects of sleep, but this is as yet unexplored. The primary aim of this qualitative study was to investigate the phenomenology of cognitive fluctuations in dementia with Lewy bodies by understanding caregiver experiences. METHODS: Seven caregivers of people with dementia with Lewy bodies completed one-to-one semistructured interviews, which were conducted by telephone. Caregivers were asked to describe the nature, frequency, duration and potential triggers of cognitive fluctuations that were experienced by the individual with dementia with Lewy bodies. Caregivers were also asked about the subjective sleep experience of the individual with dementia with Lewy bodies, and about their own sleep experiences. Interviews were audio recorded, transcribed verbatim and analysed using Thematic Analysis. RESULTS: Caregivers reported that there was a great deal of individual variation in the frequency, duration and severity of cognitive fluctuations. Patient sleep disturbances, including excessive daytime sleepiness, nocturnal awakenings, restless legs and sleep apnoea, were common. However, the impact of sleep alterations or experiences upon the fluctuations was reported to be less clear. Caregivers also reported that their own sleep was negatively affected, potentially due to actively listening for overnight events and behaviours. CONCLUSIONS: Qualitatively, caregivers report that dementia with Lewy bodies cognitive fluctuations show large individual variations in terms of their frequency, duration and severity, but that subjectively, sleep may not consistently influence this symptom. Specific, caregiver-focussed interventions are likely to be necessary to maintain good sleep health in dementia with Lewy bodies caregivers.