Abstract
The impact of dementia and Alzheimer's disease extends far beyond the healthcare needs
of the person with dementia. As the disease progresses, individuals with dementia
often require ongoing formal or informal care for their basic daily routine because
of behavior changes and continuing loss of cognitive function. Most of the care for
people with dementia takes place at home, and the unpaid, informal caregivers are
often spouses or other relatives. Providing long-term informal care at home for someone
with dementia is psychologically, physically, and financially draining. The tragedy
described in this case elucidates the far-reaching societal impact of dementia care
and the implicit health policy considerations.
In 2007, a 91-year-old Japanese man with dementia was in the care of his wife when
he wandered from home, was hit by a train, and died, immediately affecting the Central
Japan Railway Company operations and, subsequently, legal practice as well as Japanese
elder care policy. The railway sued the man's wife and son for negligence and lost
revenue, winning both trials at the local and district courts. This ruling shocked
families and caregivers in Japan, where care for elderly parents traditionally falls
on the oldest son, and brought attention to the complex issues related to dementia
care. A decade later, we revisit this case to provoke a renewed dialogue about the
matrix of responsibilities and liabilities associated with caregiving; to illuminate
the unmet needs of the person with dementia, as well as his or her informal caregivers;
and the financial implications related to long-term care policy. We close with 2 practical
suggestions which preserve the dignity of the individual and provide reassurance for
caregivers.
Keywords
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of the American Medical Directors AssociationAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Family of man with dementia killed by train wins liability appeal. Japan Today.(Available at:)https://japantoday.com/category/national/family-of-dementia-patient-killed-by-train-win-liability-appealDate accessed: January 15, 2018
- Japan: Dementia lessons from the world’s oldest country. The Star.(Available at:)https://www.thestar.com/news/world/2015/11/22/japan-dementia-lessons-from-the-worlds-oldest-country.htmlDate accessed: January 15, 2018
- Family of dementia patient who died in train accident relieved at top court ruling. The Mainichi.(Available at:)http://mainichi.jp/english/articles/20160302/p2a/00m/0na/010000cDate accessed: January 15, 2018
- Wandering: Unearthing new tracking devices.Consult Pharm. 2017; 32: 324-331
- Does the shoe fit? Ethical, legal, and policy considerations of global positioning system shoes for individuals with Alzheimer’s disease.J Am Geriatr Soc. 2016; 64: 1708-1715
- Antecedents, descriptions and consequences of wandering in cognitively impaired adults and the Safe Return (SR) program.Am J Alzheimers Dis Other Demen. 2001; 16: 344-352
- Wandering: A significant problem among community-residing individuals with Alzheimer’s disease.J Gerontol B Psychol Sci Soc Sci. 1998; 53: P294-P299
- Alzheimer’s and Dementia in Japan.(Available at:)http://www.alz.org/jp/dementia-alzheimers-japan.aspDate accessed: January 15, 2018
- Prevalence of dementia in Japan: Past, present and future.Rinsho Shinkeigaku. 2012; 52: 962-964
- Japanese aged 65 or above hit record 34.6 million. The Japan Times.(Available at:)
- More than 10,000 people with dementia reported missing in Japan last year. The Japan Times.(Available at:)
- Available at:)https://www.genworth.com/about-us/industry-expertise/cost-of-care.htmlDate accessed: January 15, 2018 (
- The Japan Times.(Available at:)http://www.japantimes.co.jp/opinion/2015/10/18/editorials/leaving-jobs-nursing-care/#.WYSg_vnytphDate accessed: January 15, 2018
- Caregiver burden of Alzheimer’s disease in Japan. Kantar Health.(Available at:)http://www.kantarhealth.com/docs/white-papers/caregiver-burden-of-alzheimer’s-disease-in-japan.pdf?sfvrsn=6Date accessed: January 15, 2018
- Aging Japan faces dementia time bomb. The Japan Times.(Available at:)http://www.japantimes.co.jp/news/2017/06/06/national/social-issues/aging-japan-faces-dementia-time-bomb/#.WYSgqfnytpgDate accessed: January 15, 2018
- Measuring dementia carers’ unmet need for services—An exploratory mixed method study.BMC Health Serv Res. 2010; 10: 122
- Location-based technologies for supporting elderly pedestrian in “getting lost” events.Disabil Rehabil Assist Technol. 2017; 12: 315-323
- Electronic tracking for people with dementia: An exploratory study of the ethical issues experienced by carers in making decisions about usage.Dementia (London). 2014; 13: 216-232
- GPS Locator Devices for People with Dementia. In: CADTH Issues in Emerging Health Technologies. Ottawa (ON): Canadian Agency for Drugs and Technologies in Health; 2016.(Available at:)http://www.ncbi.nlm.nih.gov/books/NBK391026/Date accessed: January 23, 2018
- Canadian Agency for Drugs and Technologies in Health (CADTH). Issues in Emerging Health Technologies: GPS Locator Devices for People with Dementia.(Available at:)https://www.ncbi.nlm.nih.gov/books/NBK391026/Date accessed: January 25, 2018
- Balancing autonomy and security over geotracking patients with Alzheimer’s using a personalized geotracking system with social support network.Procedia Comput Sci. 2012; 10: 1064-1072
- Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: An overview of the literature.Int Psychogeriatr. 2010; 22: 1129-1142
- Choosing for another: Beyond autonomy and best interests.Hastings Cent Rep. 2009; 39: 31-37
- Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems?.Alzheimers Dement. 2014; 10: 468-476
- Labor and Welfare, Ministry of Health, Labor and Welfare Service Guide 2017: For people, for life, for the future.(Available at:)http://www.mhlw.go.jp/english/org/pamphlet/dl/pamphlet-about_mhlw.pdfDate accessed: January 15, 2018
- Current Issues in Dementia and Dementia Care in Japan.(Available at:)http://hdl.handle.net/11094/50048Date accessed: January 15, 2018
- Available at:)https://www.health.ny.gov/professionals/patients/patient_rights/molst/Date accessed: January 24, 2018 (
- Innovation and consumer directed care: Identifying the challenges.Australas J Ageing. 2015; 34: 265-268
- Beyond advance directives: Importance of communication skills at the end of life.JAMA. 2005; 294: 359-365
Article info
Publication history
Published online: March 27, 2018
Identification
Copyright
© 2018 AMDA - The Society for Post-Acute and Long-Term Care Medicine.