Never Say Never: Plan Now to Protect Your Loved One
by: Amy Ernst, Program Director
Wandering is one of the most unsettling behaviors people with Alzheimer’s display. For what looks like unknown reasons, they develop a need to go out into unknown territory, or develop new patterns that put them at great risk for becoming lost. What is often labeled as aimless activity is often an attempt to communicate after language skills have been lost.
Alzheimer’s caregivers worry about the risk, but are often not ready to put safety measures in place that may mean the difference between a life and death situation, IF the person does go missing. All too often we hear that the person with dementia, “isn’t that bad yet;” “Is not left alone;” “Never goes outdoors;” “Goes on walks around the neighborhood or on the property, but always comes back.” But we recommend “Never Say Never."
Who is at risk of wandering?
Six in 10 people with dementia will wander.
Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It’s important to plan ahead for this type of situation. People with Alzheimer’s disease are being affected by a degenerative brain disease. They have changes occurring in their brains that will not just affect their memories, but their vision, perception, language, word finding and comprehension. It is not uncommon for people with Alzheimer’s type dementia to become disoriented or lost in their own home due to these changes. This is merely an aggravation when Grandpa cannot remember where his bedroom is. Once outside the home, the added distractions created by sights, sounds, smells and temperature can greatly decrease their ability to focus and accurately navigate. We have had conversation with caregivers, who have had loved ones walk outside, turn back to the house and not recognize the house, and were not able to identify how to go back into the home.
So what may contribute to the initial event? A normal daily routine, like a walk or a drive to the grocery store. Something as simple as feeling lost, or as though they have lost something. Colors, sunlight, rain, wind, traffic patterns, noises, animals, voices, detours, can all contribute to altering the person’s perception as well as reflecting on a past experience or event that may create a need to seek or flee. It can also signal such basic needs as hunger and thirst, the need to void, or the need for exercise or rest. Wandering also may be related to:
- medication side effects,
- attempts to express emotions, such as fear, isolation, loneliness or loss,
- restlessness or boredom,
- stimuli that trigger memories or routines, such as the sight of coats and boots next to a door, a signal that it’s time to go outdoors,
- being in a new situation or environment.
Make a plan
Explore home safety tips and safety support programs in your area. It’s important to plan ahead. Wandering among people with dementia is dangerous, but there are strategies and services to help prevent it. Suggestions include:
- Keep a current photo of the person with dementia, and update it at least monthly.
- Keep a journal of normal daily routines and patterns, AND note any changes in those patterns (changes you have created and changes you have experienced in the person’s communication, verbalizations, personality and needs).
- Document medical conditions or limitations the person has (like distance they are able to walk, visual impairment, hearing impairment).
- Maintain a list of favorites and a list of dislikes – update the list as changes occur
- Make a history of past life experiences that may have been life altering or memorable (things they spoke about both positive and negative).
- Alert neighbors and local law enforcement of your caregiving for a person with dementia so they can be aware, and attuned to anything out of the ordinary.
- Make sure the person with dementia has ID on them. Even a business size card in every pocket can be helpful. If your loved one is enrolled in Medic Alert®+ Safe Return® you will receive not only ID cards but clothing tags as well.
- If the person with dementia goes missing, call 911 immediately. Time is precious for recovery, and there is no 24-hour missing persons waiting period for someone with Alzheimer’s or a dementia.
Enroll in Safety Programs
Register the person in a program for safety. Those offered by the Alzheimer’s Association are as follows:
- MedicAlert®+ Alzheimer's Association Safe Return® is a nationwide identification program designed to save lives by facilitating the safe return of those who wander.
- Comfort Zone® and Comfort Zone Check-In® allows families to monitor a person with dementia›s whereabouts remotely using Web-based location services.
- In addition, West Virginia has 48 counties supported by Project LifeSaver. Project Lifesaver provides police, fire/rescue and other first responders with a comprehensive program including equipment and training to quickly locate and rescue “at risk” individuals with cognitive disorders who are at constant risk to the life threatening behavior of wandering including those with Alzheimer’s disease, Autism, and Down syndrome.
Tips to Prevent Wandering
Wandering can happen, even if you are the most diligent of caregivers. Use the following strategies to help lower the chances:
- Having a routine can provide structure. Create a daily plan and stick to it as much as possible.
- Identify the most likely times of day that wandering may occur. Plan activities at that time. Activities and exercise can reduce anxiety, agitation and restlessness.
- Reassure the person if he or he feels lost, abandoned or disoriented. If the person with dementia wants to leave to “go home” or “go to work,” use communication focused on exploration and validation. Refrain from correcting the person. Reassure and acknowledge instead. For example, “We are staying here tonight. We are safe and I’ll be with you. We can go home in the morning after a good night’s rest.”
- Ensure all basic needs are met. Has the person gone to the bathroom? Is he or she thirsty or hungry?
- Avoid busy places that are confusing and can cause disorientation. This could be a shopping malls, grocery stores or other busy venues.
- Place locks out of the line of sight. Install either high or low on exterior doors, and consider placing slide bolts at the top or bottom.
Visit alz.org/safety for more tips on wandering.
As with so many things, we must take appropriate precautions. It is better to have a plan for a situation we hope we never have to face. Never say “never.”