The burden and preparedness of care partners of people living with amyotrophic lateral sclerosis at home in Korea

In a recent issue of Muscle and Nerve, Lee et al. show in their study on Korean care partners of people living with amyotrophic lateral sclerosis (cALS) that Korean family care partners spend more than half of each day caring for people living with ALS (pALS) at home, with most cALS feeling depressed and emotionally distressed.1 This is compounded by a feeling among cALS of insufficient preparation for their care tasks. Despite these challenges, more than two-thirds of cALS wanted to continue caring for pALS at home. This study underlines the universal challenges experienced by cALS and brings new insights on cultural contributions to these caregiver burdens. The hallmark of ALS is its inexorable progression, with pALS gradually losing their ability to perform daily tasks, becoming nonambulatory, and then often reliant on non-invasive or invasive ventilation. Eventually, many pALS become fully dependent on their care partners who must assist with mobility, feeding, bathing, and management of their communication and ventilatory devices, among other daily activities. cALS must cope with not only the physical work of assisting pALS, but also the emotional and spiritual tolls of a fatal and incurable neurodegenerative disease.2 This emotional strain is often compounded by social isolation, as the demanding nature of caregiving reduces time for personal relationships and social activities. The financial impact is also considerable, as many cALS either reduce their working hours or leave their jobs entirely to provide full-time care, leading to a loss of income and increased economic pressure.3 It is important to explore whether the concerns of cALS in Korea, as described in Lee et al, are due to lack of availability of services or reluctance of cALS to utilize them due to cultural norms, or both. There are unique challenges associated with Asian cultures. In many Asian countries, such as Korea, China and Japan, there is a strong emphasis on familial duty and filial piety, so that caring for elderly and ill family members at home is considered an obligation and a moral duty, particularly for wives and daughters.1, 4 cALS may perceive asking for help as a failure to fulfill their familial duties.5 This cultural expectation can lead to feelings of isolation and helplessness, as cALS may feel that they have no choice but to continue providing care, even at the cost of their own mental health.5 They may experience high levels of burden and guilt if they seek external help or respite care.6 Additionally, cALS may feel less prepared and capable than those in Western countries due to a lack of availability and/or access to resources like home healthcare, caregiver education programs, respite care, and training provided through multidisciplinary care settings.1 Healthcare infrastructure limitations mean that cALS often must shoulder more responsibilities, which can lead to higher stress and depression levels. Even when professional home care and institutional support systems are available and accessible, the cultural expectation that families are responsible for caregiving may discourage care partners from seeking or accepting such support, exacerbating their physical, emotional, and financial burdens.4, 5 In contrast, seeking and obtaining professional caregiving services are generally more socially acceptable and often encouraged in Western cultures.7 Cultural norms in many Western societies also are more accepting of placing elderly or severely ill family members in professional care facilities, which can ease the burden on family caregivers.8 In Europe and the United States, there is a more robust infrastructure than in many Asian countries for professional caregiving services, including home health aides and nursing facilities.9, 10 Attitudes toward mental health care likely also contribute to levels of depression in cALS in Korea as noted by Lee et al., that are higher than those experienced by cALS in Germany, Poland, Australia and Italy.1 Despite increasing awareness of mental health, there remains a stigma associated with seeking mental health care in Asian cultures due to fear of judgment and a belief that they should be able to manage on their own.11 Mental health issues are often viewed as personal weaknesses.12 This can lead to untreated depression and anxiety.12 Moreover, the availability of mental health services specifically tailored to cALS is limited. Many healthcare systems do not routinely screen cALS for depression or offer them psychological support as part of the patient's care plan. This lack of proactive mental health care may contribute to the high prevalence of depression among cALS in Korea.1, 13 The perception of lack of preparedness by cALS for the tasks of caregiving is likely a result, at least in part, of the inconsistent availability of multidisciplinary ALS clinics in Asia to provide cALS with education on disease management, including physical and emotional aspects of caregiving, psychological support, and practical training in caregiving tasks, the availability of which could reduce caregiver burden and improve their preparedness and competence.14, 15 Without coordinated care and support from a team of healthcare professionals, care partners may feel isolated and overwhelmed, leading to increased stress and depression. Although Japan has been successful in establishing such clinics, these clinics are not widespread throughout the country.16 Economic barriers, such as the cost of care and travel to urban centers where clinics are located, further limit access, especially in countries without strong healthcare insurance.17 Understanding the challenges faced by cALS in Asia is important as the burden of ALS is growing in Asia due to aging populations and increased awareness and diagnosis of the disease.18 This trend highlights the urgent need for better support systems for caregivers. Rapid urbanization and migration trends in China are causing a gap in the availability of familial caregivers and an increased need for professional care services.19 In many Asian countries, there is a need to balance traditional cultural values with the practical realities of modern caregiving. This involves enhancing the preparedness of caregivers through education, resources, and support systems.20 Additionally, policymakers must recognize the crucial role that cALS play in the healthcare system and provide them with the support they need. This could include financial assistance, subsidized respite care services, and investment in caregiver training programs to standardize elements of care and specialized caregiver skills, such as the Sakura model, where pALS and their families train professional caregivers for ALS patients in Japan.21-23 Medical insurance coverage of ALS healthcare costs differs between countries, from almost none to 55% to much of the costs paid by the government in China, Korea and Japan, respectively,17, 24, 25 which directly contributes to financial burdens shouldered by families. Public awareness campaigns and community support programs can play a vital role in promoting cultural acceptance of care partners using external resources, such as homecare services, to fulfill their social obligations to take care of family members.25 Employers should be encouraged to implement flexible working arrangements and provide support for employees who are also cALS, helping them balance their professional and caregiving responsibilities and providing them tools to maintain their social network and financial stability.26 There is a need for tailored approaches that respect cultural contexts while addressing the universal challenges of caregiving. Next steps would include performing mixed-methods and longitudinal studies on cALS across other Asian and Western countries to understand the similarities and differences in cultural values, societal expectations, healthcare infrastructure, economic development, and availability of support systems and social services. Such studies could include qualitative interviews and surveys to examine specific tasks for which care partners are responsible in different cultural contexts, which may show differences in emotional, spiritual, or physical care.17, 27 Time-use diaries or surveys to log hours spent on daily caregiving could be used to determine how responsibilities affect daily life and work-life balance, and subsequently quality of life and mental health.28 Ethnographic studies and focus groups may shed light on the ways in which societal expectations can exacerbate or alleviate the caregiving burden by providing data on cultural perceptions of caregiving as a duty, shared responsibility or professional role.1-4, 25 Research also is needed to explore the level of support provided by various government and healthcare systems to care partners by comparing government policies, financial assistance programs, and available/accessible healthcare services.29 Country-specific surveys using standardized tools such as the Zarit Burden Interview and Caregiver Strain Index could provide insight into knowledge of caregiving tasks, perceived burden, and overall quality of life among care partners. Information should be collected on the availability and quality of caregiving training programs across countries. These studies could be used to develop insights on how the government, healthcare providers, and society can collaborate to ensure that cALS receive the recognition, respect, and assistance they deserve, and that both pALS and cALS receive the holistic support they need. Both authors contributed to writing and reviewing the editorial. Dr. Yeo and Dr. Simmons have no relevant financial or non-financial interests to disclose related to the content of this manuscript. Dr. Yeo and Dr. Simmons declare that they have no conflicts of interest related to the content of this manuscript. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. Data sharing is not applicable to this article as no new data were created or analyzed in this study.