"I need to be alert at night to provide care": Factors associated with problematic sleep among young Australian caregivers.

OBJECTIVES: There is increased recognition that young people (<25 years) may occupy a carer role for family or others with health conditions or disability. This is often in addition to study and social activities. This means competing demands on time, and insufficient sleep. Our aim was to determine the contribution of caring duties to problematic sleep in young carers. METHODS: A survey of Australian carers was conducted, including questions on demographics, characteristics of the carer and care recipient, and sleep quality and quantity. Participants were eligible if they reported sleep time <7 hr or dissatisfaction with their sleep, and were aged 15-24 years. RESULTS: A total of 110 participants (71.8%_female = 79, 15-17 years = 62, 18-24 years = 48) were included in analysis; 55.5% (n= 61) reporting dissatisfaction with their sleep and 62.7% (n= 69) reporting typically less than 7 hr sleep per night. Sleep duration was significantly shorter for those who reported 1-2 or ≥3 awakenings to provide care, compared with no awakenings (p_< .05). Sleep quality, as described by scores on the Pittsburgh Sleep Quality Index (PSQI) was also significantly worse for those who were frequently awoken by their care recipient (p < .05). Worrying about the care recipient, being woken by the care recipient, and listening out for the care recipient were the most frequently identified factors impacting on sleep. CONCLUSION: Young carers experience reduced sleep duration and poor sleep quality. Strategies to alleviate the burden of care work on young carer's sleep would benefit the health and safety of this group.

Sleep disturbance in caregivers of individuals with Parkinsonism: a systematic review and meta-analysis.

OBJECTIVES: The global prevalence of Parkinsonism continues to rise given ageing populations. Individuals with Parkinsonism who have moderate or severe symptoms typically require a high level of care, including assistance with activities of daily living. This care is often provided across the 24-hour period by a family member or friend. It is likely that providing care significantly impacts the sleep duration and quality of the caregiver given overnight caring responsibilities, in addition to worry and stress associated with the caregiving role. The aim of this systematic review and meta-analysis was to investigate whether providing care to an individual with Parkinsonism was associated with disturbed caregiver sleep, and to identify associated factors that may contribute to disturbed sleep in this population. SETTING: Five databases were electronically searched on 30 June 2021 including CINAHL, PubMed, PsycINFO, CENTRAL and EMBASE. PARTICIPANTS: Eligibility criteria included a population of caregivers whose care recipient has a form of Parkinsonism. PRIMARY AND SECONDARY OUTCOME MEASURES: To be included in this systematic review, outcome measures of caregiver sleep (eg, sleep duration, sleep quality) were required. RESULTS: Eighteen studies (n=1998) were included. Findings indicated that caregivers of individuals with Parkinsonism typically experience poor sleep quality (mean (95% CI): 5.6 (4.8 to 6.4) points on the Pittsburgh Sleep Quality Index), increased sleep latency and poor sleep efficiency. CONCLUSIONS: The degree of poor sleep quality was clinically significant. However, further investigation of sleep outcomes is required using sleep measurement tools tailored for this population (eg, measures that capture overnight sleep disruption by care recipient/s). Additionally, there is a need for appropriate individual and societal-level interventions to improve caregiver sleep. PROSPERO REGISTRATION NUMBER: CRD42021274529.

Non-pharmacological interventions for managing dementia-related sleep problems within community dwelling pairs: A mixed-method approach.

Dementia-related sleep problems can be complex and challenging. Environmental interventions which resynchronise the sleep/wake cycle have been trialled with promising results for people with dementia in institutionalised settings. However, there is less research concerning community-dwelling people with dementia and their family carers. This study involved a five-week feasibility study including timed light therapy, exercise and sleep education. Sleep and physical and mental functioning were measured at the beginning and end of the trial using objective measures, standardised questionnaires and structured participant feedback. Of 15 community-dwelling pairs who participated, nine completed the trial. The case studies presented here reveal that it is feasible for this population to use non-pharmacological interventions, with positive outcomes. However, there are also issues that can mask benefits or prevent compliance. The options for treating dementia are limited. Environmental interventions may help manage dementia-related sleep problems and further trials would be worthwhile to improve compliance and evaluate effectiveness.

Understanding the sleep problems of people with dementia and their family caregivers.

Sleep disturbances are common with dementia and can adversely affect waking function. However, the perspectives of people with dementia and their family caregivers concerning their sleep are under-researched. We conducted three focus groups with 12 community-dwelling pairs (a person with dementia and their family caregiver). Discussions addressed sleep disturbances, coping strategies, and beliefs and attitudes surrounding sleep. Thematic analysis indicated that dementia-related sleep disturbances were common, including confused awakenings and dementia-related behaviors at night, changes to sleep timing, and nightmares. Common issues for caregivers included being woken at night, having problems getting back to sleep, trips to the bathroom, and daytime sleepiness. Participants often normalized their sleeping problems and had developed a number of coping strategies. These findings highlight the impact that sleep disturbances can have on people living with dementia. Their experiences and beliefs need to be considered for developing effective interventions to improve sleep, waking function, and wellbeing.