One of the most common safety concerns for people with dementia is that they will leave the house and get lost. In my 35 years of caregiving and work experience, no one I have encountered who is living with dementia just “wanders” aimlessly. In their minds there’s a reason: They are looking for something or someone; they believe they should be somewhere (work, home, picking up a child after school etc.); they want to do something (I once lost an adult day-care client because he wanted to go fishing); they have an unmet need (hungry, thirsty, tired, lonely, etc.); or they are scared. We may not understand what they are thinking or why they are confused — and they may not be able to communicate it.
In more than a decade of caregiving for my dad, who had Alzheimer’s, he went missing twice. Both times he was legitimately looking for someone. First, I was in a doctor’s exam room with Mom, and he was in the waiting room with my niece. She wasn’t paying attention, and he went to look for Mom. He went right out the back door (which someone had left open) and through two parking lots looking for us. Thankfully, I realized he was gone and figured out where he went quickly and spotted him in the distance.
The second time, my niece was visiting my parents at their senior community and decided to wait for her mother to pick her up at the entrance to the community. Dad got worried about whether she had been picked up and walked out to look for her. When he didn’t see her (she had been picked up), he went outside the entrance and up to the corner of a major road; then he couldn’t figure out how to get back home. Fortunately, a neighbor driving by saw him asking stopped cars for help, recognized him and brought him home. It’s hard to express the sheer terror I felt in both situations.
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We were extremely lucky in these instances and I put more safeguards in place when they happened. Now there are even more readily available safety options to help. Even if we don’t think our loved ones could get lost, we all need to be prepared.
Here are some steps you can take to lower the risk:
1. Install alarms and locks.
Consider gadgets and technology that will alert you that your loved ones are up and about before they leave the home, such as audio and video monitors, floor mat or seat pad alarms, motion sensor alarms (in the home and near the door or driveway) or simple door chime alarms. Make door handles more difficult to open by using door lever safety locks or door knob safety covers. Try installing deadbolt locks where they are harder to see — like above eye level or below the “normal” placement. You may need multiple items in place to attain peace of mind. Just be sure that you can exit in an emergency.
2. Make sure they can be identified.
Be sure your loved ones have some form of identification on them. Multiple forms of identification, emergency contact numbers and disclosure of their medical diagnosis of dementia are a good idea, in case one form is removed or lost. You might get an ID bracelet or pendant, or one that laces into shoelaces or attaches to a watchband, as well as identification inside their clothing and in their wallet. My boyfriend suggested a very simple Road ID bracelet with a comfortable wristband like the one he wore when he went running. I purchased one for my dad, and he wore it for eight years, never trying to remove it. Be sure you have recent photos in case they are needed for identification in a search effort to locate an older adult who is missing.
3. Use GPS tracking.
If your loved ones have a smartphone, ensure there is a GPS tracking system installed that you can access if you can’t find them, or if you need to track their progress when they travel alone. For example, use the Find My… app (iPhone, Apple watch, laptop, iPad, or an air tag that you’ve attached to keys or other items) feature on Apple devices, or Find My Device and Find My Friends on Android devices. Other smartphone apps like Life360 Family Locator and Glympse for Auto help you track loved ones in real time. Another option is a device attached to the car dashboard, such as MotoSafety.
You can attach GPS trackers that don’t require a smartphone to clothing, keys, wallets, cars (in the trunk or underneath the bumper) or just about anywhere, including shoe-sole inserts with embedded GPS. Consider a medical alert device (or personal emergency response system — PERS), that has GPS capability so people can access help or be tracked wherever they go if they become lost.
4. Pay attention to exits and safety hazards in the yard and garage.
People who have dementia and visual/perceptual impairments may walk into glass doors, so place stickers on them. Fence in and add locked gates to the yard and, separately, the swimming pool. Monitor safety of pathways and steps, including for rain, snow and ice; ensure adequate lighting. If the grill is a concern, lock the cover and access to gas tanks and all fire starters. Check the garage for safety hazards like gasoline, tools or ladders, and block access if they pose a danger. If your loved one can easily access a neighbor’s yard, talk with the neighbor about safety issues.
5. Assess whether driving is safe.
Many people drive for a while after a dementia diagnosis. If your loved ones are still driving, be sure to constantly monitor their judgment, vision and visual processing, safety and driving/navigating skills. They may be able to operate the car safely, but unable to find their way around. Confer with his or her doctor and review AARP's We Need to Talk online seminar about discussing hanging up the keys with a loved one.
Be mindful that your loved ones know that when they stop driving their independence is threatened. They may fear isolation, so be sure to have alternative transportation options available. Some caregivers must hide the car keys or remove the car from the home to prevent their loved ones from driving. Even if you don’t think there’s a chance they could get in the car and drive, it’s a good idea to put a GPS tracker in it.
6. Flag any access to bicycles, lawn mowers, tractors, golf carts.
Keep in mind your loved ones might decide it’s a good idea to ride one of these vehicles (especially if they are no longer driving cars). Be sure to monitor their ability to use them safely and block access if they can’t. One can get quite a distance in one of these alternative vehicles.
Remember that abilities and needs can vary greatly among individuals with dementia, and safety concerns can change as the disease progresses. Continually assess your loved ones’ risk for getting lost or injured if they leave the home. Do whatever you can to minimize the chance that they’ll be in danger and have a plan in place outlining what you’ll do if they get lost, including notifying authorities, friends and family. Don’t delay; preventive measures are well worth it when it comes to protecting our loved ones.
Amy Goyer is AARP's family and caregiving expert and author of Juggling Life, Work and Caregiving. Connect with Amy on Facebook, Twitter, in AARP's Online Community and in the AARP Facebook Family Caregivers Group.