Why aren't generic IoT wearables suitable for people living with Alzheimer's?

Sometimes we're asked "What's different about PreSafe, a Personal Rescue Beacon that protects people from the dangers of hypothermia, heat stroke, hard falls, getting lost, and traffic and water risk, compared to generic GPS/geofence trackers on the market right now?"

This question is usually posed an individual who has just started to experience the mixed blessings of being a caregiver.

So, to explain why generic IoT wearable solutions are often incompatible with the needs of people living with dementia, and their caregivers, it's important to review important facts about individuals living with Alzheimer's:

First, the person living with Alzheimer's (depending on the stage they are in):

  • Does not have a reliable short-term memory.
    • This means that if you give them a new device that requires them to operate it, they probably won't be able to. They may likely not recognize it, even if taken from their own pocket or purse (ie. A help button or walkie-talkie feature may go unused).
  • Has behaviors governed by long-term habits, and not new learning
  • Does not carry a smart-phone, needed for wearables that require a blue-tooth connection
  • Will likely "wander" — which is to say they will embark on a particular direction away from their home, and sometimes just keep going.
  • May want to remained undiscovered (hide) when they wander
  • Will likely remove a new piece of jewelry (a GPS amulet or a wristwatch) by the end of the day (they will have no idea who it belongs to—only that it is not theirs—or that it's unattractive, or "medical" looking that makes them feel ashamed and stigmatized).
  • May chafe repeatedly at a locked-on piece of jewelry. (One case study noted a caregiver explaining that her uncle would try to chew a wrist-worn device off)
  • May spend much of their time indoors, sometimes in rooms without windows like bathrooms

Wandering alone is not necessarily dangerous, but what happens during a wandering event can be—hypothermia, heat stroke, traffic accidents, and drowning are the most common causes of serious injury and death from wandering.

Wandering can be done in the front yard—aimlessly going back and forth, and deadly if it's snowing outside, or a very hot summer day from dehydration.

So, with this in mind, consider the generic GPS/geofence solutions, which are not built for people living with dementia or their caregivers, and see how they work.

The Generic Tracker:

This has a built-in modem, a gps chip, and let's you set a timer on how often it will ping your cell phone. It also uses a standard GSM modem, and a 2G network.

Wearability:

If it's worn around the neck, like an amulet.

Results: Often, it's taken off by the end of the day. If the caregiver rebukes the person living with Alzheimer's for taking off the amulet, that person will generally have no idea what the caregiver is talking about. On a case by case basis, for some individuals who have a well worn habit of wearing a necklace, and who don't reject an unfamiliar one, an amulet may work. To test for this, buy a plain plastic amulet at the store for $3, which weighs about 50g, and see if your loved one is wearing it at the end of the week. Careful observation will be needed.

It's worn on the wrist, like a wristwatch.

Results: Generally, it's taken off by the end of the day, and put away somewhere, unless it's locked on. The person living with Alzheimer's will experience the watch as an oddity, and remove it (just like you would if you suddenly found some else's watch on your wrist). If locked on, it may cause chafing and fixation, and consequently damage the paper-thin skin that some seniors have. Also, unless it's presented with pleasing aesthetics, studies by the AARP have found that it will be felt as stigmatizing and cause resentment. Like the amulet, it's a case by case situation, requiring careful observation over a period of time.

Just like the amulet, test it out. Buy a $3, bulky knock-off watch and place it on them, and check to see if they are wearing it at the end of a week.

Basically and importantly, new wearables that are intrusive will be abandoned.

Our Solution:

We visited over 30 Assisted Care and Memory Care units, interviewed the staff nurses, the caregivers, and the executive directors of the facilities, as well as directors of group homes and caregivers who were the adult children of parents with Alzheimer's, and the Medical doctors at Banners Alzheimer's Institute (because we're caregivers ourselves).

We learned that for those residents that had carried keys with them through their adult life continued to carry their keys wherever they went, and were careful not to leave their home without their keys.

It was a life long habit.

By observation, this life-long habits of carrying keys remained until the later part of mid-stage dementia.

Therefore, we designed PreSafe to be an unobtrusive key fob, which attached to the key ring that person living with Alzheimer's typical used. We observed that changing the nature of the key ring, such as the use of a simple, plastic covered coil in many residential care facilities, had no effect on whether the residents always carrying their keys with them.

Our answer was to build on long-term habits that required no new learning, and no foreign intrusions.

Thus, at the end of the day, if your generic tracker is either an amulet or a wristwatch, it may be removed, and careful observation over time is best. And, this is why we designed PreSafe as a key fob, for use by individuals who have carried keys for their adult life.