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"Achieving Independent Lives for People with ALS Connected to Artificial Respirators through the Process of Accepting Care from Non-Family Members"

Hasegawa, Yui (長谷川 唯); Masuda, Hideaki (増田 英明); Nishida, Miki (西田 美紀); Kirihara, Naoyuki (桐原 尚之); Kawaguchi, Yumiko (川口 有美子); Tateiwa, Shinya (立岩 真也)
2017/12/09 Poster Presentation, The 28th International Symposium on ALS/MND, The Westin Boston Waterfront, Boston

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◆Personal assistant Hideaki Masuda’s practice of selecting and nurturing caregivers


◆Daily life with a Personal assistant

★Currently there are 15 personal assistants, and most of them are students.
Students stop being personal assistants upon graduating.
Therefore, personal assistants are constantly being recruited.

◆Welfare Program

★Long-term Care Insurance System
Personal Care (Bathing), Rehabilitation, Technical aids (Electric adjustable bed, lift, wheelchair, ramp, etc.)

★Home-visit care for people with severe disabilities
(based on the Act on Comprehensive Support for Persons with Disabilities): 987.5 hours per month
1) Personal Assistants, 2)Visiting Care from the home care agency:about 80 hours per month

◆Personal assistant training

★Entrusting care to someone requires smooth communication

◆Point of view from the Family


◆Point of view from the ALS patient

→ Suggestions regarding decision-making are formed with a priority on alleviating the family’s burden of care.

◆The ALS patient is now receiving care from someone outside the family

→ The patient frees the family from the role of caretaker while shifting to a more autonomous lifestyle.

It is important for patients to receive personalized care tailored to their needs as well as a wide range of general assistance. Having a personal assistant makes this possible and also allows patients to rely on someone other than family members.

In this way, I believe patients can continue to communicate even if it becomes difficult to express their wishes.



uploaded by Ogawa, Hiroshi
Dec. 14, 2017 REV: Dec. 30, 2017
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