Contradictory Responses to the COVID-19 Pandemic in Amyotrophic Lateral Sclerosis Patients and Their Families and Caregivers in Japan

Yanagihashi, Masaru; Sugisawa, Tatsuki; Fuchimoto, Masaaki; Saotome, Yuuichi; Onozawa, Keiko; Matsumoto, Yukinori; Bokuda, Kota; Ebina, Junya; Shibukawa, Mari; Hirayama, Takehisa; Murakami, Yoshitaka; Washizawa, Naohiro; Ebihara, Satoru; Kano, Osamu

doi:10.2169/internalmedicine.6810-20

Cited by 5 publications

(4 citation statements)

References 15 publications

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“…Telemedicine’s rapid expansion in response to the pandemic has received much attention [ 13 , 18 – 22 ], as has alternative approaches for study recruitment and data collection [ 13 , 23 – 25 ]. A smaller body of questionnaire-based research reports increased anxiety, loneliness, and depression among people affected by ALS, both PwALS and their family caregivers [ 11 , 26 , 27 ]. To date, the experiences of PwALS and their families as they responded to Covid-19 and enacted protective behaviors has received limited attention.…”

Section: Introductionmentioning

confidence: 99%

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

et al. 2022

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Background People with amyotrophic lateral sclerosis (ALS) are at high risk for severe outcomes from Covid-19 infection. Researchers exploring ALS and Covid-19 have focused primarily on system response and adaptation. Using Protection Motivation Theory, we investigated how people with ALS and family caregivers appraised and responded to Covid-19 threat, the ‘costs’ associated with pandemic response, and how health professionals and systems can better support people affected by ALS who are facing public health emergencies. Methods Data were drawn from the ‘ALS Talk Project,’ an asynchronous, moderated focus group study. Participants were recruited from regions across Canada. Seven groups met online over 14 weeks between January and July 2020. Fifty-three participants contributed to Covid-19 discussions. Data were qualitatively analyzed using directed content analysis and the constant-comparative approach. Results Participants learned about the Covid-19 pandemic from the media. They rapidly assessed their vulnerability and responded to Covid-19 threat by following recommendations from health authorities, information monitoring, and preparing for worst-case scenarios. Adopting protective behaviors had substantial response costs, including adaptations for medical care and home support workers, threatened access to advance care, and increased caregiver burden. Participants expressed need for ALS-specific, pandemic information from trusted health professionals and/or ALS health charities. Telemedicine introduced both conveniences and costs. Prior experience with ALS provided tools for coping with Covid-19. Threat and coping appraisal was a dynamic process involving ongoing vigilance and adaptation. Findings draw attention to the lack of emergency preparedness among participants and within health systems. Conclusions Clinicians should engage ALS patients and families in ongoing discussions about pandemic coping, strategies to mitigate response costs, care pathways in the event of Covid-19 infection, and changing information about Covid-19 variants and vaccines. Healthcare systems should incorporate flexible approaches for medical care, leveraging the benefits of telemedicine and facilitating in-person interaction as needed and where possible. Research is needed to identify strategies to mitigate response costs and to further explore the interaction between prior experience and coping. Further study is also needed to determine how communication about emergency preparedness might be effectively incorporated into clinical care for those with ALS and other medically vulnerable populations.

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Section: Introductionmentioning

confidence: 99%

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

et al. 2022

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“…Differently from other studies involving caregivers or patients with ALS during the COVID-19 pandemic, the novelty of the present study is that it observed the impact of this situation on caregivers by also taking into account the presence of minors who were meanwhile receiving psychological support, and investigated its indirect effects [26][27][28]. It is already known in the literature how much the well-being or malaise of caregivers affects that of their children and this was all the more accentuated during the Covid-19 pandemic, where the worsening of parents' mental health occurred together with the worsening of children's behavioral health: parents already exposed to a higher risk of distress also due to situations prior to lockdown had compromised being supportive caregivers by compromising children's mental health [29][30][31].…”

Section: Caregivers' Management Of Als During the Covid-19 Pandemicmentioning

confidence: 99%

Coping and Managing ALS Disease in the Family during COVID-19: Caregivers' Perspective

Testoni¹,

Palazzo²,

Pompele³

et al. 2023

OBM Neurobiol

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Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects motor neurons, the nerve cells in the brain and the spinal cord that enable voluntary muscle movement. Managing ALS is complex and increasingly requires informal care, most often by the patient's companions/spouses or children. The COVID-19 pandemic posed additional critical issues, particularly the disruption of home care and the increased time caregivers spent on patient care. One aim of this research was to assess caregivers’ health conditions and to understand how the lockdown has affected their lives and the management of their relatives’ illnesses. Another was to observe whether a psychological support intervention for caregivers’ minor children could indirectly impact caregivers. The study involved Italian participants: 26 caregivers (31% males and 69% females) aged between 20 and 69 years (M = 43.85 years, SD = 10.17). The following variables were measured at t0 and t1: reflective functioning with the Reflective Functioning Questionnaire (RFQ), depression with the Beck Depression Inventory-I (BDI-I), hopelessness with the Beck Hopelessness Scale (BHS) and burden of care with Family Strain Questionnaire (FSQ). At t1 only 18 participants also participated in a semi-structured interview to explore the impact of the COVID-19 pandemic, specifically on caregivers of the psychological support participants' children received. The results at t0 showed that caregivers exhibit significant distress symptoms, high stress levels and burden of care. At t1 it was found that the pandemic hurt caregivers' emotions; however, they do not show a worsening but a decrease in hopelessness. The interviews showed that the intervention on their children had a positive effect by allowing containment of the negative effects on well-being. This suggests that it is essential that ALS management also includes a whole-family intervention.

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“…8 Although we have reported the impact of COVID-19 on the mental status of patients with amyotrophic lateral sclerosis, it has also been impacting patients with PD during the pandemic. 78 Several reports have described the impact of COVID-19 on PD, in which mental instabilities have worsened motor symptoms. 61,79 Older people with frailty, depression and anxiety are commonly observed.…”

Section: Relationship Between Pd and Psychological Frailtymentioning

confidence: 99%

Similarities, differences and overlaps between frailty and Parkinson's disease

Ebina

Ebihara

Kano

2022

Geriatrics Gerontology Int

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Parkinson's disease is a neurodegenerative disorder clinically characterized by bradykinesia, rest tremor, rigidity, and postural and gait disturbances, which are frequently observed in older people. It also shows non‐motor symptoms, such as depression, anxiety, cognitive impairment and dementia. The number of patients is gradually increasing worldwide. Aging is a risk factor for the onset of Parkinson's disease, and various physiological effects of aging influence its progression. Frailty is a geriatric syndrome in which the reversible and vulnerable status between robustness and disability is affected by various physiological stressors with aging. Frailty consists of physical, psychological and social aspects. Furthermore, sarcopenia, a syndrome characterized by the loss of muscle mass, strength and function, is also significantly associated with frailty. To maintain the quality of life of older people, frailty, including sarcopenia, should be quickly and appropriately managed. Polypharmacy is an important factor causing the progression of frailty in geriatric syndrome. Although Parkinson's disease and frailty have similar symptoms, and are considered to affect each other, the clinical features and mechanisms of both largely remain unclear. Nevertheless, little literature on the relationship between frailty and Parkinson's disease is currently available. This narrative review aims to clarify the relationships between Parkinson's disease and frailty, not only on the physical, but also on the mental, cognitive, and social aspects and issues regarding polypharmacy in Parkinson's disease explored by previous studies. Geriatr Gerontol Int 2022; 22: 259–270.

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Contradictory Responses to the COVID-19 Pandemic in Amyotrophic Lateral Sclerosis Patients and Their Families and Caregivers in Japan

Cited by 5 publications

References 15 publications

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

Coping and Managing ALS Disease in the Family during COVID-19: Caregivers' Perspective

Similarities, differences and overlaps between frailty and Parkinson's disease

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