Grief support for informal caregivers of patients with ALS: A national survey

Hebert, Randy S.; Lacomis, David; Easter, C.; Frick, V.; Shear, M. Katherine

doi:10.1212/01.wnl.0000148586.79290.a6

Cited by 25 publications

(13 citation statements)

References 6 publications

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“…Although the VFS is commonly used for a general evaluation of dysphagia [13], quantitative analysis is difficult. The new devices for assessing MTP and IPG provided additional data for quantitative analysis (Figs.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Assessment of swallowing in motor neuron disease and Asidan/SCA36 patients with new methods

Morimoto¹,

Yamashita²,

Sato³

et al. 2013

Journal of the Neurological Sciences

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Section: Discussionmentioning

confidence: 99%

“…1A). The videofluoroscopic swallow study (VFS) is a classic technique that evaluates all four stages of the swallowing process [13]. In contrast, new digital apparatus for assessing maximal tongue pressure (MTP) can selectively evaluate the oral stage [14][15][16].…”

Section: Introductionmentioning

confidence: 99%

Assessment of swallowing in motor neuron disease and Asidan/SCA36 patients with new methods

Morimoto¹,

Yamashita²,

Sato³

et al. 2013

Journal of the Neurological Sciences

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“…Pagnini (37) Australian study demonstrated that MND family caregivers are at risk of prolonged grief (42). While there is a strong recognition for the value of grief and bereavement support, this support is often inadequate (41,42). In a 2001 Canadian study, 37% of caregivers were coping poorly or very poorly, sometimes years after death (28).…”

Section: End-of-life Caregiving and Requests For Hastened Deathmentioning

confidence: 99%

“…The most commonly documented mental and psychological health symptoms and issues among MND caregivers included depression (13, 15, 39-41, 45, 46, 60, 63, 64); psychological distress (15,40,50,57,60); and anxiety (27,41,46,57,62,63,65).…”

Section: Depression and Anxietymentioning

confidence: 99%

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

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“…33,34 Several authors have recommended that involvement in palliative care services for people with NDDs should occur relatively early in the course of the illness, anticipating active caregivers' needs well in advance of predictable physical deterioration, and assisting with later stage symptoms, psychosocial issues and decision making about the levels of active clinical intervention. 35,36 NDD caregivers reported that those who received more tailored services and SPCS input were the most satisfied, highlighting the need for responsive and flexible models of care for people with NDD and their caregivers.…”

Section: Aoun Et Almentioning

confidence: 99%

Caregivers of People with Neurodegenerative Diseases: Profile and Unmet Needs from a Population-Based Survey in South Australia

Aoun

McConigley

Abernethy

et al. 2010

Journal of Palliative Medicine

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Introduction: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. Methods: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using w 2 were complemented with a regression analysis. Results: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. Conclusion: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

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Grief support for informal caregivers of patients with ALS: A national survey

Cited by 25 publications

References 6 publications

Assessment of swallowing in motor neuron disease and Asidan/SCA36 patients with new methods

Assessment of swallowing in motor neuron disease and Asidan/SCA36 patients with new methods

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Caregivers of People with Neurodegenerative Diseases: Profile and Unmet Needs from a Population-Based Survey in South Australia

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