Understand Wandering, Being Lost, and Dementia

Vicky Pitner   -  

The wizard Gandalf, in JRR Tolkien’s book The Fellowship of the Rings, wrote a letter to the hobbit Froto explaining the riddle of Strider or Aragon, suggesting, “Not all who wander are lost.”  Why would I begin an article addressing “wandering” and dementia with this quote? Because I believe this is true when a person with dementia walks out of the house unexpectedly and possibly goes missing. The wandering event begins with a purpose, but during the journey, the person can become lost due to visual-spatial difficulties that may develop with a dementia diagnosis. This, of course, is distressing for the family and often for the person, but understanding why a wandering journey begins can help keep your family member safe and possibly avoid any dire consequences.

Wandering is not “escaping,” “running away,” or “just being difficult,” but rather an attempt to meet a need. The person may need to be physically active and go for a walk, with no awareness of their safety, and neglect to let someone know of their intention. The need may be to go shopping to purchase milk to help out at home, go to work, even though the person left the workforce many years ago, or the need to purchase a birthday gift for someone they love. When a loved one walks out of the house unexpectedly or “wanders” away from you in the shopping mall, understanding the intent is important. Perhaps this is really just “meaningful wandering” to find purpose in their day.

A person living with dementia may feel their life is turned upside down, and finding purpose is a way to make sense of a disorganized and confusing world. Thinking the grandchildren need to be picked up from school would give purpose, and grabbing car keys while heading out the door when driving has become unsafe is concerning.

Feeling lost and disconnected from everything around you with no purpose or direction in life can result in helplessness and sometimes hopelessness. Being spiritually lost and not feeling grounded in faith can contribute to the restlessness a person feels when living with dementia. When providing support at home, keeping your family member safe by taking necessary precautions while honoring the need to find purpose is important.

Taking regular walks with your loved one can help meet a need to be physically active. When asked who is at risk for wandering, the answer is anyone with cognitive decline, confusion, or memory loss. There are usually no warning signs the person is more likely to walk out of the house, and families are shocked when it happens, explaining the person had “never done this before.”  Wandering events are unpredictable, but If your loved one does walk out of the house or becomes disoriented and lost in the mall, consider if the person is left or right-handed, as wandering patterns tend to follow the direction of the dominant hand.

Look in familiar places or areas they have wandered before. If your loved one is not found in 15 minutes, notify your local police department, and when the person is located and returns home, please do not scold, fuss, or shame them for leaving. Chances are, the person was only trying to be helpful. If the wandering event, unfortunately, leads to serious or even deadly consequences, know your loved one was happy and content on their last journey because they were fulfilling a purpose that was very meaningful to them.

If you would like more information on our Memory Ministry, Memory Café, or need tips on supporting your family member, please contact Vicky Pitner at vpitner@firstumc.org.