Pre‐death grief in the context of dementia caregiving: a concept analysis

Lindauer, Allison; Harvath, Theresa A.

doi:10.1111/jan.12411

Cited by 101 publications

(116 citation statements)

References 81 publications

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“…Most of the risk factors of PDG may possibly be conceptualized within the context of losses related to the past, present, and future 15,34. Most of the risk factors of PDG may possibly be conceptualized within the context of losses related to the past, present, and future 15,34.…”

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confidence: 99%

“…Most of the risk factors of PDG may possibly be conceptualized within the context of losses related to the past, present, and future 15,34. Three of the variables (primary caregiving role, behavioral problems in PWD, and more severe dementia) are related to higher care responsibilities which increase the risk of caregiving burden-such constant struggle with caregiving burden can serve as an ongoing reminder to caregivers of the present reality of ambiguous loss, whereby the PWD may be physically present but is a vestige of what he used to be 9,15. Three of the variables (primary caregiving role, behavioral problems in PWD, and more severe dementia) are related to higher care responsibilities which increase the risk of caregiving burden-such constant struggle with caregiving burden can serve as an ongoing reminder to caregivers of the present reality of ambiguous loss, whereby the PWD may be physically present but is a vestige of what he used to be 9,15.…”

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confidence: 99%

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Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis

Liew

Tai

Yap

et al. 2018

Int J Geriat Psychiatry

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Background Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. While such phenomenon of pre‐death grief (PDG) has been increasingly described, we are uncertain how it can be distinct from the well‐studied construct of caregiver burden. Objective To determine whether there are differences in the risk factors of PDG and caregiver burden to aid in our understanding of the relationship between the two constructs. Methods Spouses or children of community‐dwelling PWD were consecutively sampled from two tertiary hospitals. They completed questionnaires containing a PDG scale, a caregiver burden scale, and information related to the caregiver and PWD. Risk factors of PDG and caregiver burden were identified using multivariate regression, within which PDG and caregiver burden scores were jointly included as two separate dependent variables. Results We recruited 394 caregivers with a mean age of 53.0 years (SD 10.7), majority were Chinese (86.6%), children caregivers (86.3%), and primary caregivers (70.8%). In the regression analyses, we identified three risk factors which were shared by both PDG and caregiver burden (later stage of dementia, behavioral problems in PWD, and primary caregiving role) and three other risk factors which were unique to PDG alone (younger age of PWD, lower educational attainment of caregivers, and spousal caregiver). Conclusions The different risk factor profiles evidence a distinction between PDG and caregiver burden. They may possibly be distilled into a framework to direct our approach to PDG interventions, which may include using caregiver burden as an opportunity to initiate conversations on grief, exploring the various aspects of losses and encouraging adaptive coping.

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confidence: 99%

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confidence: 99%

Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis

Liew

Tai

Yap

et al. 2018

Int J Geriat Psychiatry

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“…Alzheimers Australia (2014) recognises this as a common feeling among dementia carers. One recent study referred to this loss as "pre-death" grief and noted that as a scholarly point of view, it is an emerging concept [26]. The grief cited by respondents and supported by the literature review [26] refers to carers witnessing the changes and losses in the person with dementia.…”

Section: Discussionmentioning

confidence: 99%

“…One recent study referred to this loss as "pre-death" grief and noted that as a scholarly point of view, it is an emerging concept [26]. The grief cited by respondents and supported by the literature review [26] refers to carers witnessing the changes and losses in the person with dementia. Presumably, the closer the previous relationship, the greater the amount of stress felt by the dementia carer.…”

Section: Discussionmentioning

confidence: 99%

What Do Rural Dementia Caregivers Find Stressful?

Ervin¹,

Reid²,

Moore³

2015

OJN

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This study aimed to determine what carers of people with dementia in rural Australia found stressful in their caring role. It was part of a broader mixed methods study exploring carer depression, anxiety and stress and utilisation of formal community support services. The findings suggest that carer stress varies among individuals, but that a predominant source of stress is the unremitting burden experienced when caring for someone with dementia. Improved utilisation of support services in rural areas and tailoring services to individual carers dependent on the source of stress is recommended.

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“…This almost inevitably affects pre-existing relationships and can lead to 'social death' (Sweeting & Gilhooly, 1997) whereby the person with dementia is treated as being 'as good as dead' and is therefore, not interacted with at all or in any meaningful way. Consequently, dementia has been described as 'dual dying' (Jones & Martinson, 1992), with 'bereavement' experienced firstly as the disease evolves and 'takes away' the known person, giving rise to 'pre-death grief' (Holley & Mast, 2009Lindauer & Harvath, 2014), and secondly, when physical death occurs.…”

mentioning

confidence: 99%

‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia

Sikes

Hall

2017

Mortality

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MortalityPromoting the interdisciplinary study of death and dying Research suggests that the grief experienced by the family members of persons with dementia has a distinctive nature that differentiates it from sorrow attendant on most other ill health causes. Over a variable period of time, the way in which dementia manifests in cognitive and physical changes tends to be experienced as a series of serious losses, each of which can be a source of grief leading to significant stress and emotional, mental, psychosocial and physical ill health. Research to date has focused on spouses and adult children: here we seek to add to the literature by re-presenting the grief-related perceptions and experiences of children and young people who have a parent with a young onset dementia. We draw on findings from a narrative auto/ biographical investigation to describe what dementia grief was like for study participants and to make suggestions for resources and support for those in this position.

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Pre‐death grief in the context of dementia caregiving: a concept analysis

Abstract: The concept of pre-death grief has salience for researchers and caregivers. This analysis lays the foundation for use of the concept in nursing research and practice across cultural, environmental and illness domains.

Cited by 101 publications

References 81 publications

Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis

Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis

What Do Rural Dementia Caregivers Find Stressful?

‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia

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