After the care journey: exploring the experiences of family carers of people living with dementia

Jameson, Sonja; Parkinson, Lynne; Banbury, Annie

doi:10.1017/s0144686x19000667

Cited by 3 publications

(2 citation statements)

References 46 publications

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“…On the other hand, the loss of autonomy, the degree of cognitive deterioration of the patient with dementia, their physical manifestations and, especially, their behavioural manifestations, also influence burden [19][20][21]. However, some authors such as Van der Lee et al [22] place manifestations or behavioural disorders as the aspect of dementia that has the greatest impact on caregiver burden.…”

Section: Introductionmentioning

confidence: 99%

Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia

Gimeno

Val

Moreno

2021

IJERPH

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Dementia produces a loss of independence to carry out the activities of daily life. The great demand for care that these people need usually falls on the family through informal care. This study aims to analyse the burden showed by the informal caregiver of a person with dementia. In addition, we analyse whether this burden present in informal caregivers could be related to abusive behaviour. We also study the relationship between the stage of the disease, the appearance of behavioural disorders and the level of burden in the caregiver using the Scales of Zarit, CASE and FAST. The data showed that 45.50 per cent of caregivers have light burden or burden. After the research, it was identified that the presence of behavioural disorders in patients with dementia showed a correlation with the increase in both the main caregiver burden and abuse. An increase in the level of burden is followed by an increase in the level of abuse (r = 0.844; p = 0.000). Furthermore, we analysed several conditions that could have a correlation with this burden and abuse. It was found that burden in the caregiver could be linked with the presence of behavioural disorders, like aggression (r = 0.577; p = 0.008) and irritability (r = 0.600; p = 0.005) at the moderate stage of the disease. On the other hand, there is a positive correlation between the probability that people with dementia suffer abuse in the moderate stage of the disease and the presence of aggression (r = 0.732; p = 0.000), lack of inhibition (r = 0.571; p = 0.009) and irritability (r = 0.827; p = 0.000). Taking this data into account, burden and abuse seem to be linked to the presence of behavioural disorders in patients with dementia in the moderate stage.

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Section: Introductionmentioning

confidence: 99%

Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia

Gimeno

Val

Moreno

2021

IJERPH

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“…Moreover due to the short follow-up period of studies in this area, it is often difficult to extrapolate what the immediate and long-term effects of discontinuing care provision has had on the former carer. Jameson et al (2019) conducted a qualitative study in Australia of discontinued carers, who provided care to people living with dementia. The authors found that after the person with dementia died, spousal carers tended to struggle with the transition out of the caring role more so than adult children who had provided care for a parent with dementia.…”

Section: Associations Of Discontinuing Care the Caring Rolementioning

confidence: 99%

Associations of discontinuation of care: A longitudinal analysis of the English Longitudinal Study of Ageing?

Palmer

2020

Health Social Care Comm

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Informal carers play a vital part to ensuring that individuals in need of care, due to illness or disability, continue to experience a good quality of life. Care provision has been studied extensively, however, little is known about the associations of discontinuing care. This knowledge is important not only to ensure that informal carers are supported, even after caring episode, but also to ensure the care-recipients are not left without support. By conducting longitudinal analysis of the English Longitudinal Study of Ageing (ELSA), this paper uniquely starts to unveil the associations of dis-How to cite this article:

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“I Have Accepted My Father’s Death; I was not Sad but Relieved.” Adaptive Grief Responses for Bereaved Dementia Family Caregivers: A Scoping Review

O’Donnell,

Baker

2023

Omega (Westport)

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This scoping review explores findings from the psychological and medical literature on the adaptive grieving experiences of bereaved dementia family caregivers and integrates what healthcare professionals can do to support bereaved dementia family caregivers transition into a post-death role. Bereaved dementia family caregivers are particularly susceptible to prolonged grief disorder post-death due to the protracted caregiving demands and progressive course of the illness. The mention of caregiver grief while the person with dementia is living is quite common in the literature; however, limited research focuses on the bereaved dementia family caregiver and the methods they use to grieve adaptively. Three overarching adaptive grieving themes emerged from the review: 1) social health, 2) emotional and spiritual fitness, and 3) reclaiming activities. Given the growing prevalence of bereaved family dementia caregivers, understanding how they might most adaptively grieve and experience the greatest possible well-being should be a top focus for research.

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After the care journey: exploring the experiences of family carers of people living with dementia

Cited by 3 publications

References 46 publications

Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia

Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia

Associations of discontinuation of care: A longitudinal analysis of the English Longitudinal Study of Ageing?

“I Have Accepted My Father’s Death; I was not Sad but Relieved.” Adaptive Grief Responses for Bereaved Dementia Family Caregivers: A Scoping Review

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