As we age we become more vulnerable. Our bodies move a little slower. Our minds may need a little more time to process information. And with that vulnerability comes a need for others to be mindful and protective of the dignity of the aging individual.
The need to respect the dignity of an aging individual can be challenging when safety becomes an issue. Dementia can bring challenging behaviors that test the patience and peace-of-mind of caregivers. A loved one who habitually gets lost can be a constant source of strain and the solution of a locked care floor an unwelcome choice.
Can tracking technologies offer a solution?
Individuals with a cognitive impairment, like dementia, may wander. The Alzheimer’s Foundation of America estimates that roughly 60% of individuals with dementia wander, and over half of those who go missing for more than 24 hours die or are seriously injured. This is a devastating blow to caregivers and one that they want to avoid.
Tracking technologies are touted as being a solution to the potential consequences of wandering. They can be placed in shoe heels, wristwatches, mobile phones or a necklace. These technologies can potentially save the life of someone who gets lost by notifying authorities or caregivers and helping to locate them.
Even just the presence of the device can improve the peace of mind of both caregivers and patients. [caregivers]
[Patients] The reason for the device can make a difference. A Swedish study interviewed seniors who were given safety alarms that they could activate themselves. For the majority of these individuals, the fact of electronic surveillance actually made them feel more secure and allowed them to live longer in their own homes.
[Cost concerns] By making it easier to find people who are lost, it can also reduce the strain on public resources and law enforcement. On average, it takes 9 hours to locating a wandering person at a cost of $1500 an hour.
However, tracking technologies are invasive. They impose limitations on the privacy of the individual. They can also represent an affront to the dignity and autonomy of the individual. There is also a temptation to use the tracking devices in place of human contact — ie. checking in electronically rather than in person.
The Universal Declaration of Human Rights enshrines both privacy and freedom of movement as fundamental rights. In research today, best practices are being developed to use tracking devices in a way that respects these rights and promotes the dignity of the individual.
Tony Yang and Charles Kels in their paper “Ethical Considerations in Electronic Monitoring of the Cognitively Impaired” identify seven ethical principles that need to be considered:
Liberty. Setting an alarm to trigger when a person crosses a virtual line obviously puts limits on a person’s movement. This can affect the activities they participate in and the choices they make (walking outside vs. sitting in front of the T.V.). On the other hand, having virtual rather than physical boundaries is less intrusive to a person’s life. Having a safety net to protect against wandering can also help a person feel more secure living in their own home or in a less controlled care setting.
By using electronic monitoring to promote rather than restrict independence, caregivers can ensure they respect the liberty of the person.
Privacy. Electronic monitoring of any kind means having constant surveillance. This surveillance can be visual, GPS-based, auditory, etc. In any form it can be extremely uncomfortable to the person subjected to it. The individual may choose to trade some of this privacy, however, for the ability to live longer in their own home.
By limiting access to the data collected by the electronic monitoring system and limiting the use of constant surveillance methods as much as possible, caregivers can ensure they respect the privacy of the person.
Dignity. Most people associate electronic tracking with negative situations (criminals on house arrest or bail) or undignified situations (animals released back into the wild, postal packages). These negative associations can threaten the dignity of those seniors who might otherwise benefit from some form of electronic tracking. Other researchers have pointed out that having electronic tracking for people who wander might help reduce incidents of wandering that result in stigmatizing.
By ensuring that any electronic tracking devices are discreet and regularly reassessed to determine their necessity, caregivers can help preserve the dignity of the person.
Respect for persons, including autonomy. When a cognitive impairment is involved, the person’s ability to consent to electronic monitoring may not always be present. The individual may not always remember to use the device properly (putting on the wristwatch before going out, wearing the necklace around the house) or may not choose to do so.
By avoiding deception around the use of electronic tracking and trying at all times to maximize the involvement of the individual in decisions, caregivers can ensure the person is respected.
Beneficence. As discussed above, wandering is very dangerous, particularly for seniors with less stable health. The stress associated with the potential wandering can seriously wear down the health of the family caregiver. On the other hand, wandering may be caused by an unmet need and so can act as a wake-up call for caregivers to revisit their care plan. For instance – an individual may be lonely and so wander off in search of a friend.
By examining the reasons behind behavior that seems to justify electronic surveillance and by not considering electronic surveillance as a quick-fix solution, caregivers can ensure they are considering the overall benefit of the individual and maintain a comprehensive care plan.
Tracking devices should not be used to replace human interaction. Research shows that face-to-face interactions are important for mental health and so continuing to have human points of contact is important. The potential for tracking devices to allow more freedom of movement within a care setting has not been fully explored but is promising.
Using technology to enhance and support individuals to live with dignity is something we can all get behind. The challenge will be in not removing the human interface and defaulting to electronic care.
Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.