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UAlbany Professor Investigates Complexities of Caring for Those with Dementia

A 91-year-old man with dementia wanders away from home and is killed by a train. Who is responsible?

As nations across the world grapple with how to provide services for a growing elderly population, this is the question, based on a real-life case, that University at Albany School of Public Health professor Dr. Yuchi Young considered as she explored the matrix of responsibilities and liabilities associated with caring for the elderly, particularly those with dementia.

A worldwide epidemic

According to the World Health Organization, more than 47 million people worldwide are living with dementia; this number is expected to reach 75 million by 2030. Fast forward to 2050, and the number is expected to almost triple. Dr. Young, associate professor of health policy, management and behavior, notes that 60 percent of people with dementia wander from their homes and up to 50 percent of those who are not found within 24 hours face serious risk of injury and death.

In the peer-reviewed Journal of the American Medical Directors Association, Dr. Young, Mr. Maksim Papenkov, an undergraduate economics student, and Dr. Taeoko Nakashima of Rutgers University assert that the case is a prime example of how the impact of dementia and Alzheimer’s disease extends far beyond healthcare, saying “as the disease progresses, individuals with dementia require ongoing formal or informal care for their basic daily routines because of behavior changes and continuing loss of cognitive function.”

Who is responsible?

In this case, the man was killed by a moving train as he walked along a railway line in Obu City, Japan after wandering from the home he shared with his wife, his primary caregiver. The railway, having to cancel or delay 54 trains, sued the man’s wife and son for over 7 million yen ($65,000 US). The case triggered a national debate about who is responsible for the care of an aging population, and in a ruling that shocked the nation, the court declared that the man’s wife was liable.

Though she eventually won an appeal on the grounds that she was 85 at the time and disabled herself, the tragedy exposed significant issues related to long-term care in countries, including the United States.

Dr. Young notes that there are four parties that could hypothetically be held liable in an accident like the one studied:

  1. The person with dementia: It could be said that the collision and resulting train delays simply would not have occurred if not for his actions.
  2. “In-house” caregivers: Because long-term care is expensive, many people living with dementia rely on either professional care services or unpaid family caregivers.
  3. The railway company: Dr. Young notes that an argument could be made that the man with dementia was not prevented from walking on the tracks, indicating that the company had not been adequately monitoring the safety of their railway system.
  4. The government: In Japan, under the Japanese Long-Term Care Insurance Act, services are available to all citizens age 65 and older who meet the eligibility criteria. Dr. Young says this begs the question: “What is the government’s responsibility considering ever-increasing needs for long-term care and appropriation of limited resources?”

“While this tragic incident in Japan may seem to be an extreme example, the reality is that it’s not out of the realm of possibility for something like this to happen anywhere, at any time,” said Dr. Young. “Dementia is unpredictable and costly to manage; these are the types of conversations society needs to be having if we are going to be proactive about our aging population.”

Possible solutions

Dr. Young and her research partners believe a proactive approach to dementia care is necessary and they recommend two potential, albeit imperfect solutions. The first involves the use of wearable technology with the ability to track the exact location of individuals who wander, while the second suggests including dementia care options in healthcare advance directives.

“Wearable technology may lead to ethical issues related to autonomy, privacy, and liability, but it approaches a way to enhance safety,” said Dr. Young. “Along the same line, advanced directives must be designed to include language specific to dementia/Alzheimer’s disease and must be made available before onset of these conditions.”

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