#WorldALSDay: 'Survey on Home Care Support for ALS Patients' Released - Challenges and Policy Recommendations from Voices of Approximately 500 Multidisciplinary Professionals and Families Nationwide

Ahead of World ALS Day on June 21, the results of a national survey were announced at a press conference at the Ministry of Health, Labour and Welfare on June 10.

U-STYLE LABORATORY Co., Ltd., a specialized provider of care for severe disabilities and intractable diseases, and as the largest provider of severe home-visit care services in Japan, has been involved in supporting the largest number of ALS (Amyotrophic Lateral Sclerosis) patients in Japan.

Going beyond daily care, to fundamentally improve the home environment for ALS patients, the company conducted a survey titled 'Survey on Home Care Support for ALS Patients' in collaboration with the specialized journal 'Intractable Diseases and Home Care,' targeting families and support professionals involved in home care for ALS patients.

We are releasing the content announced at the Ministry of Health, Labour and Welfare ahead of World ALS Day on June 21, an awareness day for ALS.

Background of the National Survey of Supporters: Visualizing Challenges Seen by Those Involved in ALS Support

ALS is an intractable disease in which the nerves that control muscles (motor neurons) gradually degenerate, leading to progressive muscle weakness and atrophy throughout the body. While consciousness, sensation, and intellect are preserved, functions of the limbs, speech, and breathing are lost. The number of patients in Japan is estimated to be approximately 10,000.

As the disease progresses, 24-hour care including medical procedures such as suctioning of sputum and tube feeding becomes necessary, making the support of families and support professionals (counseling support specialists, medical/nursing staff, care workers, etc.) indispensable.

Currently, with the development of various disability welfare services including severe home-visit care, the option for ALS patients to 'live at home' has become possible. However, in the field of support, there are voices saying 'information and support are insufficient' and 'we want to provide better support.'

What are the actual difficulties and challenges in home care support?
This survey visualizes challenges from three perspectives: 'families,' 'social workers (counseling support professionals),' and 'medical/care professionals,' and makes recommendations to society. While previous surveys have mainly focused on patient awareness surveys or medical trials, this project is the first national survey of its kind and the largest in Japan to extract challenges in home care support from the perspective of 'all parties involved in ALS support,' including families caring for patients and the multidisciplinary professionals supporting the care field.

● Survey Purpose: To improve the quality of home care support for ALS patients by visualizing the 'challenges' seen from the perspectives of families and supporters. It aims to visualize the challenges faced by supporters (decision-making, lack of social resources, psychological burden, etc.) and provide an opportunity for society as a whole to think about ALS support on World ALS Day, June 21.
● Survey Overview: Extract challenges from three perspectives: 'families,' 'social workers,' and 'medical/care professionals' who support ALS patients.

[Survey Subjects and Overview]

● Subjects:
　○ Families caring for ALS patients
　○ Social workers (counseling support specialists, care managers, MSWs, public health nurses, etc.)
　○ Medical/care professionals (severe home-visit care workers, home-visit nurses, home-visit care workers, etc.)
● Survey Method: Widely recruited via SNS and other means; responses collected via web form.
● Response Period: February 16, 2026 – March 13, 2026
● Valid Responses: Total 486 (from 42 prefectures nationwide)
　○ Families caring for ALS patients: 136
　○ Social workers: 66
　○ Medical/care professionals: 284
● Survey Content: Challenges visible from each of the three perspectives were answered in a selection format. Families were asked whether they wish to provide lifelong home care (and the reason) in selection and free-text formats. What each of the three groups wants from the other groups and from the administration was answered in free-text format. In addition to the above questions, cross-data such as 'years of caregiving experience' and 'number of people supported' were also collected.

■ Summary of Survey Results

1. Families: The 'Communication Barrier' and Physical Burden Continuously Faced in Long-Term Care

[Survey Data] (Subjects: Families, Total 136)

● Most challenging issue
　○ 1st: Difficulty communicating with the patient (20 responses)
　○ 2nd: Lack of information on available social resources and welfare services (12 responses)
　○ 3rd: Difficulty getting service provision approved, physical burden of caregiving, lack of treatment information and clinical trials/palliative care (11 responses each)

● Issues perceived as challenging (multiple choice, top 5)
　○ 1st: Difficulty for the patient to express their will (70 responses)
　○ 2nd: Physical burden of caregiving (64 responses)
　○ 3rd: Difficulty communicating with the patient (63 responses)
　○ 4th: Challenge of balancing caregiving and family life (57 responses)
　○ 5th: Lack of treatment information and clinical trials/palliative care (52 responses)

● Wish to provide lifelong home care?
　○ 1st: Yes (83 responses / approx. 61%)
　○ 2nd: Don't know (45 responses / approx. 33%)
　○ 3rd: No (8 responses / approx. 6%)

The first notable point from the family survey is the reality of long-term care and the high percentage wishing for home care. Over half of the respondents (76) had caregiving experience of '3 to less than 10 years,' and including those with '10 years or more,' many have been providing care over a long period. Furthermore, while only about 6% answered 'do not wish to provide lifelong home care,' approximately 61% (83 responses) answered 'wish to provide lifelong home care,' showing how much they value life in their familiar home.

Main reasons included 'because the patient wishes it,' 'because in facilities or hospitals, a fixed caregiver cannot provide one-on-one care, causing inconvenience for the patient,' and 'because we want to be together as long as possible.' In the free-text responses from families who answered 'don't know,' the main reason cited was 'the possibility that I myself may not be able to continue caregiving.'

On the other hand, the biggest challenge in daily care was 'difficulty communicating with the patient' (20 responses). This was particularly high among those with caregiving experience of '3 to less than 10 years.' Generally, it is thought that caregiving becomes easier with experience. However, in the case of ALS, as the disease progresses, vocalization, facial expressions, and even eye movements are gradually lost. This suggests that families repeatedly experience the loss and reconstruction of communication methods over many years, where even after establishing a method, it becomes impossible again due to disease progression. This 'communication barrier,' which does not diminish over time, can be said to be the anguish faced by families.

Furthermore, the survey highlighted challenges such as a lack of information on available social resources and welfare services, and treatment information, and even when information is found, difficulty getting service provision approved. Additionally, while 'physical burden of caregiving' was ranked 3rd in 'most challenging issue,' it was ranked 2nd in 'issues perceived as challenging (multiple choice, top 5),' and 'challenge of balancing caregiving and family life' (4th) was also high, highlighting the issue of decreased QOL for the families themselves.

2. Social Workers: The Difficulty of 'Standing in the Gap of All Shortages' of Information, Knowledge, and Local Resources

[Survey Data] (Subjects: Social Workers, Total 66)

● Most challenging issue
　○ 1st: