Alzheimer’s GPS Device: Safety Measure or Privacy Invasion?

By Pamela D. Wilson, MS, BS/BA, NCG, CSA

legalAre Alzheimer’s GPS devices considered a safety measure to protect from the risks of wandering or an invasion of privacy? Retired Supreme Court Justice Sandra Day O’Connor announced a diagnosis of dementia two days ago. I wonder, now that she is diagnosed with dementia, how might she rule on electronic surveillance and the use of GPS tracking devices to support safety for persons diagnosed dementia? U.S. v. Katzin was an early Supreme Court case about surveillance. Does personal experience cloud legal judgment?

The possibility of a diagnosis of Alzheimer’s Disease increases the ethical considerations for estate planning, elder law and probate attorneys. Are you including care planning provisions for Alzheimer’s or dementia in your estate planning documents? Do you consider the use of a GPS tracking device for a client who wanders to be an invasion of privacy or a prudent safety measure?

According to the Alzheimer’s Association, 1 in 10 Americans over the age of 65, 14% of people age 71, and 32% of persons over age 85 have Alzheimer’s Dementia. This means that 1 in 3 older adults die with some form of dementia. (1) The statistics are sobering. Estate plans must address the possibilities of a diagnosis of Alzheimer’s Disease.

Wandering is a component of dementia that is rarely discussed until a tragic news story is published. An article in the Journal of the American Geriatrics Society reports, “as many as 70% of individuals with dementia wander from their homes at some point during the disease progression.  It takes law enforcement an average of 9 hours to resolve a wandering incident at a cost of $1500 per hour. “(2)

Many family members place loved ones prematurely in gated Alzheimer’s communities because of fear that the diagnosed spouse or parent will wander away from the home and be fatally injured.

Have you asked your estate planning clients if they would agree to some type of surveillance, like a GPS monitor, to protect safety and well-being if they were diagnosed with Alzheimer’s disease? Are you aware of the other questions that should be asked?

Estate Planning Documents Must Address Specific Considerations of  Alzheimer’s Disease

Estate planning for Alzheimer’s DiseaseAs a caregiving advocate and professional fiduciary for more than twenty years, I have been involved with many older adults diagnosed with Alzheimer’s disease. Some early in the disease, when they were able to describe their wishes for care. Others at the end of the disease when I had to use substituted judgment to make the decisions I thought my ward would make.

Discussions about desires for care with available family and friends were helpful. There were times when no family or friends were available and the decision was solely mine.

Placing older adults diagnosed with Alzheimer’s into a gated community because of wandering  can be traumatic. Besides the behavior of wandering, the older adult may still be relatively high functioning from a mental and physical perspective. Placing a high functioning individual in a low functioning environment poses risks. Individuals progress to the lowest denomination. If the persons living in memory care predominantly use wheelchairs, the high functioning individual will, sooner rather than later, find him or herself in a wheelchair.

In the documents I have seen, besides the standard, “take me off life support” questions, none of the medical power of attorney documents or living wills included information specific to “my wishes if I am diagnosed with dementia or Alzheimer’s disease.” None included for provisions of medical errors or unintentional error by care staff. None discussed provisions for wandering. None included “if I can’t speak for myself, this is what I want.”

Understandably the guardian or medical power of attorney has the power to make decisions. The reality is that most family members in these positions act like a deer in the headlights. They have no idea what steps to take to ensure better than average care.

Most estate planning documents include the standard statement of incapacity so that the medical power of attorney can be appointed as guardian in the situation of diagnosed incapacity. But what then? Where do concerns about safety intersect with autonomy, privacy, dignity, and consent?

Alzheimer’s Wandering and GPS Tracking Devices

Family members may err on the side of safety over all other concerns. Professional fiduciaries are to follow “least restrictive options.” Depending on considerations about wandering versus risk, the actions of the family member and the professional fiduciary may conflict. When—not if— you are contacted to resolve this situation, what will you do?

How are GPS devices for safety any different from the Granny Cams used in nursing facilities and care homes to protect residents from elder abuse? Families willingly agree to allow video cameras to be placed in the rooms and apartments of aging parents in care facilities to avoid loved ones being abused by care staff.

The goal of the Granny Cam is to support investigation of abusive practices by care staff. The videos allow a review of video taped interactions. Facilities support this practice because it is an added layer of protection against litigation by families who allege that care staff initiated abusive actions or were neglectful.

Did you know that when you visit clients at nursing facilities or care homes you may be on candid camera? Should this be another question you ask your estate planning clients? Would they approve surveillance by a video camera to protect their level of care and to avoid abuse by care staff? Or would they find a video camera to be an invasion of privacy?

Client Consent, Safety, and Autonomy

GTX Corporation of Los Angeles has developed GPS tracking soles marketed for persons with Alzheimer’s disease and young adults and teens with autism and developmental disabilities. (3) The GPS soles can be placed into any shoes and automatically tracks the location of the individual. The benefits are twofold: 1) quickly finding a wandering loved one and 2) avoiding the high expense of gated memory care communities.

As an elder law, probate, or estate planning attorney where did your mind track when reading about the GPS device? Lack of consent to place GPS soles in shoes? Concerns about privacy? What does the tracking company do with the data? Will the GPS soles really postpone more restrictive care?

Has the client expressed wishes specific to wearing this type of equipment? Would the client find their rights to privacy violated or would they view the device as supporting independence? Will tracking reduce the duty of family members to monitor care? Who will be responsible for monitoring the tracking device?

Using the GPS soles with the consent of family may decrease the odds of litigation associated with use of the devices. What happens in the case of the appointment of a professional fiduciary, guardian, who chooses to use the GPS sole to delay placement and family disagrees?

Surveillance Cases Have Reached the Supreme Court

Cases about electronic surveillance and personal privacy have been heard by the Supreme Court. What about Fourth Amendment rights and cases like U.S. v. Katzin? (4) A list of court cases specific to electronic evidence are available. (5)

Admittedly this new technology may provide safety and protection for older adults diagnosed with Alzheimer’s disease. Law enforcement may see fewer searches if the product becomes mainstream. Older adults may not be prematurely placed in gated memory care communities thereby preserving independence. At what cost does the compromise become acceptable?

Which returns us to estate planning documents. What will you do now, having this information? Put this on the back burner until you have a case to litigate? Begin talking to your clients about their wishes if diagnosed with Alzheimer’s or dementia?

A component of being proactive may be to collaborate with an estate planning team of a financial or wealth planner if one is in place and a caregiving expert familiar with Alzheimer’s care. Then develop a care plan or statements that may be included in estate planning documents to address all of the components surrounding Alzheimer’s care.

Remember the ever-famous trial of the century, “if it doesn’t fit, you must acquit,”? (6) This may be the case of “if you didn’t try to fit (the GPS sole), you must admit,” you quit. Quit trying to foster independence, safety and autonomy. Quit trying to support least restrictive alternatives. Rather than using medications or a gated memory care unit to eliminate the risks of wandering, how many of us would be willing to first try the GPS sole?

Sources:

(2) Yang, Y. Tony, et. al. “Does the Shoe Fit? Ethical, Legal, and Policy Considerations of Global Positioning System Shoes for Individuals with Alzheimer’s Disease,” JAGS 64
:1078-1715, 2016. https://onlinelibrary.wiley.com/doi/abs/10.1111/jgs.14265

© 2018 Pamela D. Wilson, All Rights Reserved.

Pamela D. Wilson, MS, BS/BA, CG, CSA, a National Certified Guardian and Certified Senior Advisor, is a caregiving and elder care expert, advocate, and speaker. Pamela offers family caregivers programming and support to navigate the challenges of providing, navigating, and planning for care. She guides professionals practicing in estate planning, elder and probate law, and financial planning to create plans to address unexpected concerns identified in her past role as a professional fiduciary. Healthcare professionals are supported by Pamela’s expertise to increase responsiveness and sensitivity to the extensive range of care challenges faced by care recipients and caregivers.

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