“I think I could have coped if I was sleeping better”: Sleep across the trajectory of caring for a family member with dementia

Abstract

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.

“It’s Just [Complicated] Sleep”: Discourses of Sleep and Aging in the Media

“…Although empirical research indicates that changes to the structure of sleep and an increased incidence of sleep problems are associated with advancing age ( Ancoli-Israel et al, 2008 ; Roepke & Ancoli-Israel, 2010 ), the proliferation of such messages through the media may promote problematic beliefs ( Robbins, Grandner, et al, 2019 ). This includes both the normalization regarding sleep change identified in previous interview studies among older New Zealanders ( Crestani et al, 2022 ) and the hopelessness experienced by families living with dementia ( Gibson et al, 2014 , 2023 ). As people age, negative stereotyping and stigmatizing of older people can affect beliefs about their abilities and capacities ( Breheny & Stephens, 2019 ; Edström, 2018 ; Vasil & Wass, 1993 ).…”

“…Such discourses gender sleep problems and solutions without examining the norms and expectations that underpin the conditions under which women sleep. For example, older women have been identified as more likely to undertake caregiving duties than older men ( Alpass et al, 2013 ), roles that impinge on the quality and quantity of sleep ( Gibson et al, 2023 ).…”

“…The architecture and structure of sleep as well as sleep-related behaviors change over the life course. Periods of significant life transition such as retirement and care responsibilities typically influence sleep regulation and quality ( Gibson et al, 2023 ; Myllyntausta et al, 2021 ). Prevalence of insomnia, “problem sleep,” and sleep disordered breathing have been reported to increase with age.…”

“…Those with an illness or sleep disorder invariably disrupt those who they share a bed or bedroom with. This can be challenging in informal care situations with regard to care provision, functionality while awake, and overall well-being of household members ( Gibson et al, 2023 ).…”

The Effect of Tele-Savvy on Sleep Quality and Insomnia in Caregivers of Persons Living with Dementia

“…26,[28][29][30][31][32] Since stress and depressive symptoms are associated with poor sleep outcomes. 4,31,[33][34][35][36][37] and acts of self-care such as meditation and relaxation are related to having better sleep, [38][39][40] it is feasible to posit that a reduction in stress and depressive symptoms with enhanced self-care may improve sleep. In this paper, we examine the effect of Tele-Savvy on caregivers' sleep quality and insomnia symptoms.…”