Balancing sleeping with guardianship: narratives of sleep during informal dementia care

Gibson, Rosemary; Helm, Amy; Ross, Isabelle; Gander, Philippa H.; Breheny, Mary

doi:10.1332/239788221x16613777827869

Cited by 3 publications

(4 citation statements)

References 45 publications

(54 reference statements)

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“…The interviews and corresponding transcripts were rich with stories that were outside of the scope of the present thematic analysis. A separate narrative analysis was conducted exploring the overarching tensions of balancing individual sleep needs and preferences with the vulnerabilities of falling asleep potentially undermining the responsibilities of guardianship (see Gibson et al, 2022 ).…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2023

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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.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2023

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“…Extant qualitative data (open ended questions from a nationwide survey) conducted via regional dementia support service in 2016–17 for 526 caregivers to PLWD on sleep and wellbeing [ 24 ], plus follow-up interview data with 20 caregivers for whom the PLWD had recently transitioned into residential care [ 25 ]. Free text responses to the survey and interview data highlighting factors affecting sleep and wellbeing including continence identified in 94 of the 526 surveys and 13 of the 20 interviews.…”

Section: Methodsmentioning

confidence: 99%

“…Promoting continence and managing incontinence for PLWD in the community often requires hyper-vigilance by caregivers. This, in turn can contribute to sleeplessness and exhaustion for the caregiver, increasing the likelihood of residential care placement for the PLWD [ 15 , 20 , 24 , 25 ]. Presently, we do not know how unpaid caregivers, and families in NZ manage the challenges associated with promoting continence and managing incontinence.…”

Section: Introductionmentioning

confidence: 99%

Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study

Burholt,

Peri,

Awatere

et al. 2023

PLoS ONE

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Background The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Māori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. Methods and analysis A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers’ study, and collecting new cross-sectional and longitudinal qualitative data from Māori and non-Māori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.

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“…35 Follow-up interviews with a subsample of these survey participants suggest that sleep is among the most challenging issues among those caring for someone with dementia, having implications for carers mood, health and ability to cope with the overall situation. 37 However, the relationship between care recipients sleep and carer distress has yet to be explored in broader samples of New Zealand carers or using largescale population data.…”

Section: Strengths and Limitations Of This Studymentioning

confidence: 99%

Exploring older care recipients’ sleep status as a predictor for informal carer distress: evidence from New Zealand’s interRAI home care assessment data

Gibson,

Abey-Nesbit,

Gander

et al. 2023

BMJ Open

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ObjectivesUnderstanding factors affecting informal carers’ well-being is important to support healthy ageing at home. Sleep disturbances of care recipients are increasingly recognised as affecting the well-being of both parties. This research assesses the relationship between indicators of care recipients’ sleep status and carer distress, as well as carer distress with subsequent admission to residential aged care, using prospectively collected Home Care International Residential Assessment Instrument (interRAI-HC) assessment data.ParticipantsData were sourced from 127 832 assessments conducted between 2012 and 2019 for people aged 55 years or older who had support from at least one informal carer. The majority (59.4%) of care recipients were female and 59.1% were defined as having cognitive impairment or dementia (CIoD).SettingNew Zealand.DesignLogistic regression modelling was used to assess the independent relationships between indicators of care recipients’ sleep status (difficulty sleeping and fatigue) and primary caregivers’ distress (feeling overwhelmed or distressed). Kaplan meier curves illustrated the subsequent relationship between caregiver distress and care recipients’ transitions to aged residential care.ResultsCare recipients’ sleeping difficulty (32.4%) and moderate–severe fatigue (46.6%) were independently associated with caregiver distress after controlling for key demographic and health factors included in the assessment. Distress was reported by 39.9% of informal caregivers and was three times more likely among those supporting someone with a CIoD. Caregiver distress was significantly associated with care recipients’ earlier admission into aged residential care.ConclusionsIndicators of sleep disturbance among care recipients are associated with increased likelihood of carer distress. This has implications for managing the overall home-care situation and long-term care needs, as well as the well-being of both parties. Findings will inform research and development of measures, services and interventions to improve the sleep and waking health of older people, including those with CIoD and family caregivers.

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Balancing sleeping with guardianship: narratives of sleep during informal dementia care

Cited by 3 publications

References 45 publications

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

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

Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study

Exploring older care recipients’ sleep status as a predictor for informal carer distress: evidence from New Zealand’s interRAI home care assessment data

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