This research explores and represents the sleep of people caring for a family member with cognitive impairment or dementia. A thematic analysis was applied to the open-ended comments from 526 carers from a postal survey concerning sleep, health and caregiving. Themes are presented within a framework of five dimensions of sleep health. Themes of sleep duration included striking a balance between ‘achieving the hours’ whilst also sacrificing sleep to manage responsibilities. Themes of sleep efficiency included symptoms of insomnia (‘losing sleep over the situation’) and ‘sleeping on guard’ in case night-time support was required. Timing of sleep was themed as either restricted to ‘when the one I care for sleeps’ or salvaged as a luxury ‘quiet time’. Levels of alertness were represented within themes of being ‘tired all of the time’ whilst also in a state of ‘high alert’. Finally, overall sleep satisfaction ranged from themes concerning ‘sleeping fine at the moment’ to sleep being ‘a big problem’. The sleep experience of family carers is unique and often includes tensions between roles and responsibilities and their own need for sleep and well-being. Findings have implications for community support and healthcare interventions for families affected by dementia.
Dementia-related sleep changes can lead to disruptions among families living with dementia which can jeopardise carers’ wellbeing and ability to provide support. This research explores and represents the sleep of family caregivers across the trajectory of caring, before, during, and after the key period of their care recipient moving into residential care. The focus of this paper is viewing dementia caregiving as a trajectory, characterised by care needs which change over time. Semi-structured interviews were conducted with 20 carers whose family member with dementia had transitioned into residential care within the prior 2 years. Themes constructed from these interviews indicated that sleep was linked to earlier life course patterns as well as to significant moments of transition in the caregiving journey. As dementia progressed, carers’ sleep progressively worsened in relation to the less predictable nature of dementia-symptoms, difficulty maintaining routines, and constant responsibilities creating a state of high alert. Carers attempted to facilitate better sleep and wellbeing for their family member, often sacrificing their own self-care. Around the care transition period, some cares reported not realising how sleep deprived they were; for others the busy momentum continued. After the transition, many carers acknowledged that they were exhausted, although many had not realised this while providing home-based care. Post-transition, many carers reported ongoing sleep disruptions associated with poor sleep habits established whilst caring, insomnia or nightmares and grief. Carers were optimistic that their sleep would improve with time and many were enjoying sleeping according to their own preferences. The sleep experience of family carers is unique and includes tensions between their essential need for sleep and the experience of care as self-sacrifice. Findings have implications for timely support and interventions for families living with dementia.
Sleep has been recognised as compromised in dementia care. This study aims to represent the experiences and needs of informal carers via sleep-related accounts. Retrospective interviews were conducted with 20 carers concerning sleep changes across the trajectory of dementia care. Key interactive narratives were around: ‘sleep as my sacrifice’; tensions between identities of being a ‘sleeper’ versus ‘guardian’; and ‘sleep as a luxury’. Maintaining healthy sleep and preferable sleep practices is challenging while balancing the responsibilities of dementia-related care. Acknowledging sleep as a sociological practice enables a greater understanding of carers’ nuanced experience and support needs.
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