A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options

Trail, Marilyn; Nelson, Naomi; Van, John; Appel, Stanley H.; Lai, Eugene C.

doi:10.1016/s0022-510x(03)00003-0

Cited by 149 publications

(122 citation statements)

References 18 publications

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“…More speciically, it has been found that between 13.0% and 61.0% had moderate to severe levels of depression and about 16.0% take medication for depression [63][64][65]. However, caregivers may be actually experiencing anticipated grief and pain for the future loss than a typical situation of care, characterized by progressive but prolonged deterioration over time.…”

Section: Amyotrophic Lateral Sclerosis (Als)mentioning

confidence: 99%

Psychopathological Symptoms in Caregivers of Demented and Nondemented Patients

Vázquez¹,

Otero²,

Blanco³

et al. 2018

Caregiving and Home Care

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Currently, more than 1 in 10 adults living in the Organization for Economic Co-operation and Development is involved in nonprofessional care of a dependent family member. The main causes of dependence are dementia, followed by other conditions such as cerebrovascular accidents, limb impairment, depression, and vision impairment. Although care provided by the caregiver is crucial to the well-being of the cared person, it can also have negative consequences on the caregiver's emotional state. This chapter aims to describe the psychopathological symptoms experienced by caregivers based on the condition of the person cared for. A bibliographic search was conducted to examine the efects of care on the emotional state of caregivers, distinguishing patients with dementia from those with other conditions. Depressive and anxiety symptoms were the most frequent psychopathological symptoms, both in caregivers of demented and nondemented patients, experienced by caregivers of patients with dementia, cerebrovascular accidents, traumatic brain injury, schizophrenia, cancer, amyotrophic lateral sclerosis, and autism spectrum disorder. In caregivers of patients with bipolar disorder and vision impairment, depressive symptoms were most prominent, whereas anxiety symptoms were common in caregivers of patients with spinal cord injuries. Sleep disturbances were found among caregivers of dementia and schizophrenia patients. Strategies for preventing psychopathological symptoms were provided and the importance of professional support when they occur was pointed out.

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Section: Amyotrophic Lateral Sclerosis (Als)mentioning

confidence: 99%

Psychopathological Symptoms in Caregivers of Demented and Nondemented Patients

Vázquez¹,

Otero²,

Blanco³

et al. 2018

Caregiving and Home Care

View full text Add to dashboard Cite

show abstract

“…The impact of nutritional intervention on survival is recognized; however, the benefit of gastrostomy alone has not been shown [118][119][120]. Retrospective population studies suggest that the relationship is "tentative" and other factors such as age and site of onset along with riluzole and the use of noninvasive positive pressure ventilation, may be more significant prognostic determinants.…”

Section: Percutaneous Endoscopic Gastrostomymentioning

confidence: 99%

Challenges in the Understanding and Treatment of Amyotrophic Lateral Sclerosis/Motor Neuron Disease

Rosenfeld¹,

Strong

2015

Neurotherapeutics

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With the acceleration in our understanding of ALS and the related motor neuron disease has come even greater challenges in reconciling all of the proposed pathogenic mechanisms and how this will translate into impactful treatments. Fundamental issues such as diagnostic definition(s) of the disease spectrum, relevant biomarkers, the impact of multiple novel genetic mutations and the significant effect of symptomatic treatments on disease progression are all areas of active investigation. In this review, we will focus on these key issues and highlight the challenges that confront both clinicians and basic science researchers.

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“…MND caregivers tend to have reduced social contacts, social network size and quality due to caregiving (39,54,58), which may contribute to social isolation and perceived burden (54).…”

Section: Mitigating Factors Associated With Caregiver Burden and Qualmentioning

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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A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options

Cited by 149 publications

References 18 publications

Psychopathological Symptoms in Caregivers of Demented and Nondemented Patients

Psychopathological Symptoms in Caregivers of Demented and Nondemented Patients

Challenges in the Understanding and Treatment of Amyotrophic Lateral Sclerosis/Motor Neuron Disease

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

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