Burden of care in amyotrophic lateral sclerosis

Hecht, Martin; Graesel, Elmar; Tigges, Sebastian; Hillemacher, Thomas; Winterholler, Martin; Hilz, M. J.; Heuss, Dieter; Neundörfer, B.

doi:10.1191/0269216303pm754oa

Cited by 93 publications

(82 citation statements)

References 20 publications

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“…There are indications that female MND caregivers may experience greater burden than men (13,31,32,53,59).…”

Section: Mitigating Factors Associated With Caregiver Burden and Qualmentioning

confidence: 99%

“…In about 15% of cases, people with MND will develop frontotemporal dementia which presents additional challenging neurobehavioral symptoms for family caregivers including irritability, impulsivity, loss of insight, self-centeredness and lack of empathy, aggression, food cravings, and obsessions and/or compulsive behaviors (30). A German study found burden is markedly higher in MND caregivers who report encountering "problem-behavior" (32). Cognitive changes have a profound impact on caregivers, sharply increasing depression and burden and negatively impacting their quality of life (31).…”

Section: Cognitive and Neurobehavioral Declinementioning

confidence: 99%

“…This included interventions in the caregiving situation through: providing paid assistance for home help services(72); helping caregivers both socially connect with and mobilize their informal networks (32,58); connect with community support groups (13); providing direct psychological support (60); and targeted delivery of psycho-educational programs (50,63,64).…”

Section: Providing Supportive Services and Addressing Caregivers' Supmentioning

confidence: 99%

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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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“…There are indications that female MND caregivers may experience greater burden than men (13,31,32,53,59).…”

Section: Mitigating Factors Associated With Caregiver Burden and Qualmentioning

confidence: 99%

Section: Cognitive and Neurobehavioral Declinementioning

confidence: 99%

Section: Providing Supportive Services and Addressing Caregivers' Supmentioning

confidence: 99%

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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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“…Here, we report on two studies examining temporal cognitive changes in ALS. Indentifying and acknowledging that ALS patients may also be dealing with cognitive and/or behavioral changes in addition to their debilitating motor declines may help their physicians and caregivers to better care for the individual with ALS and anticipate problems that they may experience throughout the disease progression (Hecht et al, 2003). These cognitive changes can affect the everyday social interactions of ALS patients, and they are vital for the execution of more complex tasks such as decision-making, problem solving, and management of occupational demands (e.g., multi-tasking).…”

mentioning

confidence: 99%

Overview of Cognitive Function in ALS, with Special Attention to the Temporal Lobe: Semantic Fluency and Rating the Approachability of Faces

Schmolck¹,

Schulz²,

York³

2012

Amyotrophic Lateral Sclerosis

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“…In another study, 1 we found that time allocation affected the perceived quality of life and perceived burden of ALS caregivers, which was mostly related to "personal and social restrictions" 7 or to "time-dependence burden" and "developmental burden" (which is interpreted as the feeling of the person to be out of time with respect to his or her peers).…”

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confidence: 99%

Hypergraphia and the diagnosis of psychogenic attacks

Benbadis

2006

Neurology

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Abstract-The authors evaluated the caregiver time for 70 patients with ALS. The mean number of caregivers per patient was 2.0 (SD 1.3). Caregiver time increased with worsening of disability (p ϭ 0.0001). The most time-consuming duties were housekeeping, feeding, and toileting. With worsening of patients' disability, families relied increasingly on paid caregivers. Caregiver time is a hidden cost of ALS care and is a major burden for caregivers. NEUROLOGY 2006;67:902-904 A. Chiò, MD; A. Gauthier, PsyD; A. Vignola, PsyD; A. Calvo, MD; P. Ghiglione; E. Cavallo, MD; A.A. Terreni, MD; and R. Mutani, MDTime taken for caregiving is a major problem in ALS. 1 However, in contrast to other chronic neurologic disorders, such as Alzheimer disease (AD) 2 or stroke, 3 the amount and characteristics of caregiver time has never been formally assessed in ALS. We therefore assessed the use of time by ALS caregivers in relation to the severity of disability and the use of life-supporting procedures.Methods. We studied 70 consecutive patients affected by probable, probable laboratory-supported, and definite ALS, according to revised El Escorial criteria, who were attending the Turin ALS Center or were visited at their home by one of the authors during a 2-month period (February to March 2005). No patient declined participation in the study. All caregivers, professional (paid) or voluntary (unpaid), were interviewed. Caregiver time allocation was evaluated using the Caregiver Activity Time Survey (CATS), 4 which analytically measures the use of time in nine areas: feeding, toileting, bathing, dressing, administering medications, supervision, housekeeping, transportation, and other tasks. The caregivers were asked to record in a diary the total time (hours and minutes) spent for caregiving in a typical 24-hour period for each task. Disability of patients was evaluated with the ALS Functional Rating Scale (ALS-FRS). The Italian National Health System pays for tracheostomy and enteral nutrition. In addition, patients with severe disability receive 400 euros ($450) per month to help pay for professional caregivers.Statistical analysis was performed with multiple regression analysis. A p value less than 0.01 was considered significant.Results. The 70 patients (28 women, 42 men) had a mean age of 61.3 years (SD 10.6) with a mean disease duration of 48.8 months (SD 38.3; median 26 months, range 4 to 360 months). Twelve patients received enteral nutrition via percutaneous endoscopic gastrostomy/radiologically inserted gastrostomy, 10 used noninvasive positive-pressure ventilation (NIPPV), and 4 used mechanical ventilation with tracheostomy. The mean number of caregivers per patient was 2.0 (SD 1.3; range 1 to 8), including 121 voluntary caregivers (55 spouses, 51 sons/ daughters, 6 parents, 9 other relatives) and 18 paid caregivers. The mean time spent in caregiving was 570 minutes each day (SD 512; range 15 to 3,051). Caregiver time increased with increased disability score (r ϭ Ϫ0.48; p ϭ 0.0001) (table 1). The mean number of caregiver...

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Burden of care in amyotrophic lateral sclerosis

Cited by 93 publications

References 20 publications

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

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

Overview of Cognitive Function in ALS, with Special Attention to the Temporal Lobe: Semantic Fluency and Rating the Approachability of Faces

Hypergraphia and the diagnosis of psychogenic attacks

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