Getting lost: It only takes one time!

Getting lost: It only takes one time, wandering is a common symptom of Alzheimer’s and dementia.

Many thoughts have run through my mind since the Silver alert went out last Thursday evening about Carol McHugh, a person with memory issues who went missing. Events like this are tragic, traumatic for families, and disruptive to entire communities. Witness the enormous effort by law enforcement agencies and volunteers that has gone into the search for Ms. McHugh.

This case has really hit home for Citrus County, but it is a situation that happens far more frequently than many people realize. More than 60 percent of those with Alzheimer’s or another form of dementia will wander, and if a person is not found within 24 hours, the odds are that the wanderer will suffer serious injury or death. Wandering is a common symptom of dementia, which currently afflict more than 6,000 people in our county!
In my work, I have provided many hours of education to caregivers about the danger and likelihood of wandering, but too many seem to take false comfort in the belief that “It won’t happen to me.” So often I hear responses like, “Well, he hasn’t wandered yet,” “He never leaves my sight,” or “It won’t happen because all he does is sit in his chair.”

I do not know whether people are really this unconvinced, or whether it is such a frightening prospect that they immediately leap into a state of denial. But for whatever reason, it seems to be a topic that we too often dismiss lightly until it is too late.

In my caregiver workshops and support groups, I tell a story about my son who owns a swimming pool. Some years ago, even before his young son could walk, he began to install a safety fence around the pool. They did not wait for him to become a toddler, and they did not wait for him to fall into the pool for the first time before they became concerned. Yet it seems so much harder for us to anticipate this kind of potential tragedy when there is an adult with dementia involved, rather than a child.

You might say, “Well this was their responsibility as parents. The real and present danger is obvious!” To this I would respond that when we know six out of ten adults with dementia will wander, the real and present danger should be equally obvious. Just as with the likelihood of the child drowning, we need to put countermeasures in place as soon as the problem becomes imaginable.

Please understand that this is not an indictment of the family and friends of Ms. McHugh, nor of the local community. I am only pointing out that it happens, it happens quickly, and it happens more often than we realize, and that when it happens we have already missed our opportunity to apply countermeasure.
One of the most important things we can do is get a human scent preservation kit, commonly called a Scent Kit. They are readily available in Citrus County; from the Sheriff’s Office, from Find M-Friends, from my company Coping with Dementia, from the libraries, and from the community centers. These kits enable scent-discriminating dogs to far more rapidly find or lead first responders to a person who has gone missing.

I should add here that scent kits are equally important for children, especially those with autism or mental disability. I urge everyone to get a scent kit now, before you need it rather than after, in which case it could be too late.

I have observed also that it is difficult for caregivers to make that 911 call when a loved one has gone missing. Perhaps they are embarrassed, or perhaps they underestimate the seriousness of the situation. They may wait for hours, hoping their person will turn up, or that they will find them without outside help. Don’t delay! If you cannot find your person in 30 minutes, you may have already waited too long. Get on the phone and call for help.
I too went through this with my husband who passed away in 2010. As his disease progressed, he began to leave the house while I was at work. More than once a neighbor or a Sheriff’s deputy called me to say they had found him and were bringing him home. This was because he had a wanderer’s ID bracelet with my phone number that I acquired as a member of the Alzheimer’s Family Organization.

But each time this happened, he was able to get farther away from home. It is shocking how far a person can travel in a short time, and finally I had to place him in a secure daycare while I was at work.
Coincidentally, I lived in the same neighborhood as Ms. McHugh where there are lakes, wetlands, swamps, and densely wooded areas. These are the features so many of us associate with our wonderful Citrus County quality of life. But they are the same features that increase danger and the likelihood of a bad outcome for a person with memory issues who has wandered.

Now I look back and realize I was one of the lucky ones, and my message to others is that it is foolish to rely on luck. Please do not let this happen to you. There are important things you can do to avoid tragedy. More countermeasures than we have space to discuss here are available. Do not wait, act now!

I refer you to the Alzheimer’s Association web site: