A Plan for Balancing Independence and Safety for A Loved One Living With Dementia
If your loved one with dementia goes missing, a wandering plan can help improve the likelihood they’ll return home safe and sound.
There’s no feeling like the icy fist of terror that clenches around your heart when you discover someone you love has gone missing, particularly if that individual is vulnerable due to a health condition. And unfortunately, if you have a family member who is living with Alzheimer’s or another form of dementia, there’s a good chance that you could face that frightening scenario one day. All you need to do is read Tracy’s story to know what this situation feels like.
“Data tells us that six in 10 people with dementia will go missing at some point in the trajectory of the disease,” explains Christina Stergiou-Dayment, Senior Director, Programs and Partnerships at the Alzheimer Society of Ontario. “But what’s really distressing about that figure is that if those individuals who go missing aren’t found within 24 hours, up to 50 percent will be found severely injured or deceased.”
However, there are proactive strategies that, when used together, can form a layer of protection to help keep your loved one as safe as possible without compromising their quality of life. One key thread in that safety net is a wandering plan.
What is a wandering plan?
A wandering plan is an information packet that aims to increase the chances of a positive outcome if a person with dementia goes missing. The first component is a list of particulars to help first responders recognize, identify, and best approach the person when they are found. The second part of the packet is an action plan—a list of instructions for family members and friends to follow as soon as they suspect their loved one may have gone out and lost their way.
“In a crisis, it’s hard to think of the information you need to provide to police services and first responders to expedite their ability to find the missing person,” says Stergiou-Dayment. Preparing information ahead of time ensures you’ll have all those details at your fingertips even if your mind is frozen with fear.
An up-to-date list of personal details
Stegiou-Dayment suggests starting by creating a file containing essential facts about your loved one. (You can find a detailed “Identification Kit” template for download here, from the Alzheimer Society of Ontario’s “Living Safely With Dementia” program.) This should include:
● A recent photo.
● Physical description. In addition to height, weight, hair colour and complexion, include any other distinguishing features. Does the person have a tattoo? Do they wear glasses? Does the individual walk with difficulty, or use a mobility aid, like a cane?
● Name and nickname. An individual may not use or recognize their legal name, notes Dr. Stephanie Tan, Associate Vice President, Research and Programs at MedicAlert Foundation Canada. She cites the example of her late grandmother; who had dementia. “She went by a nickname, but no one outside the family would have known that,” Dr. Tan says.
● Languages spoken. It’s important to know if the person grew up speaking another language, since some people with dementia experience “time- shifting”—that is, they experience the present as if they are living at an earlier time in their life.
● Former addresses. Again, due to time-shifting, someone with dementia might head to a place they once lived, thinking they’re going home.
● Places the person frequents.
● Wandering history. If the individual has wandered before, where were they found?
● Medical conditions and medications. Update this list any time your loved one is given a new diagnosis, or prescription.
● Tips on approaching or connecting with the person. “What sort of strategies from a personality perspective might help calm them down?” Stegiou-Dayment asks. For example, she adds,” if the person likes gardening, that’s something they might be excited to talk about.”
An additional layer of protection
As you go through this process, it’s an ideal time to consider including MedicAlert in your wandering plan toolkit. First of all, a MedicAlert ID with a special blue-coloured logo is a visual cue for first responders that the wearer has memory problems. Plus, if you subscribe to MedicAlert’s Safe & Found Program, all the above-mentioned data and more can be stored securely in MedicAlert’s database, so first responders can get immediate access when necessary. Not only does it make updating and centralizing the information about your loved one easy, it also means first responders have instant access to that information and do not need to take the time to go through these details with you. Their focus can be immediately on looking for your loved one. When seconds count, this can be an important factor in the outcome of a wandering incident.
Dr. Stefanie Tan is MedicAlert’s Associate Vice President of Research, Innovation and Programs. In her family’s case, they got reassurance from being able to link her grandmother’s current address and emergency contact information with her MedicAlert bracelet. “For sure, she wouldn’t have remembered my mom’s number,” Dr. Tan says.
The phone number for MedicAlert’s 24/7 Emergency Hotline listed on the bracelet is another feature of the Safe & Found program that can expedite the missing individual’s reunion with their family. Should a member of the public encounter an individual who seems confused, calling the number allows for swift identification of the person and transmission of that information to first responders. It also enables the MedicAlert team to notify family members that their loved one has been found by a Good Samaritan.
Some families may also want to investigate adding a GPS tracking device to their safety plan. Where suitable, they may provide the person with dementia a sense of independence while offering some reassurance to the family. However, the various options do have drawbacks and limitations. (The Alzheimer Society of Ontario has created a website in collaboration with the University of Waterloo to help families consider all factors related to GPS usage.) MedicAlert is also working on its own GPStracking device that can be embedded directly into a MedicAlert ID. While that still a couple of years away, it will be an important additional layer of safety to help bring a love one home.
Create a wandering action plan
A written wandering action plan walks you through all the key steps you need to take if your loved one goes missing. (You can find a link to a more detailed checklist here.) These include:
● Calling 911 immediately and notifying the operator the missing person has dementia. Other information to provide police with:
○ Estimated time since you last saw the person.
○ Places where they might go.
○ Any medical conditions or medications the person is taking.
○ Any ID or locator device the individual might be carrying.
○ Any registry program the person is enrolled in, such as MedicAlert Safe and Found.
○ The licence number, make, model, and colour of the individual’s vehicle.
○ Whether the person has a credit card (and if so, whether to call the company)
● Rallying other resources.
○ Ensure someone remains at home
○ Call/text friends, family, and neighbours and tell them the person is missing.
● Performing a quick search. Check:
○ Inside the house (including possible hiding places like closets).
○ For missing items such as car keys, suitcase, or credit cards.
○ Around the exterior of your house (only if you have an enclosed yard).
What to do with your completed plan
Once your plan is complete, you’ll want to make several copies. You’ll also want to make sure all of the information is available in your loved one’s MedicAlert Personal Health Information Record. Hand some out to other people who spend time with your loved one. Keep two copies: one for yourself, and another to give to police in an emergency. Store these in a central location. The Alzheimer Society of Ontario recommends putting them in a Ziploc bag and storing that bag in the freezer, with a note on the fridge door indicating where to find it. And be sure to review the plan regularly, particularly when any details change.
If you want to ensure you have access to the plan and your loved one’s information at anytime anywhere, you should consider MedicAlert’s new +CARD. The +CARD is a convenient plastic card the size of a credit card that uses secure QR code technology that enables you, family members or other people whom you trust with your loved one’s health information and wandering plan to access that information through their smartphone.
The payoff for having a wandering plan in place is knowing you’re helping keep your loved one with dementia as safe as possible. Not only that, notes Dr. Tan, it gives families greater peace of mind.
“As soon as a diagnosis is given, a wandering plan should be started,” she says, “because you never know when that time will come.”
For additional support, programs, and community services for those living with Alzheimer’s disease or another form of dementia, check out Alzheimer Society of Ontario’s First Link® program and connect to your local Alzheimer Society