70% of individuals living with dementia will go missing at least once over the course of living with the condition. Current estimations approximate that almost 1 million individuals live with dementia in the UK, meaning the number of those at risk of wandering is immense.

This article will cover:

• What is Wandering?
• What are Wandering’s Common Causes and Risks?
• What Should you do if Someone with Dementia Wanders and Goes Missing?
• How Lumiio Safeguards those Living with Dementia in the event of Wandering and Becoming Lost?
• The Importance of Retaining Independence for Those with Dementia

What is Dementia Wandering/Walking About?

Walking is generally a good form of exercise and an effective boredom reliever, however, when individuals living with dementia repeatedly leave their house to walk, it can become problematic. This is because individuals living with dementia can find making their way back home difficult due to memory loss, disorientation, and confusion. For those with dementia, beginning to walk more or repeatedly can be a sign that they are upset with something which they are struggling to express. Often, those living with dementia will feel discomfort, boredom, or distress but be unable to communicate these feelings, this can cause the urge to walk as a way of removing themselves from the situation.  

This behaviour of repeated walking outside of the house is referred to as ‘Wandering’ or ‘Walking About’. Wandering is a debated term as many believe it implies that those living with dementia are walking with no purpose, due to this many prefer to refer to it as ‘Walking About’ or ‘Walking with purpose’. However, the term Wandering is still widely used by police, councils, and charities across the UK. To reduce confusion, this article will use wandering and walking about interchangeably.

Common are Symptoms of Dementia that Cause Wandering

Underneath the umbrella term of dementia are many specific diagnoses, like Alzheimer's disease and Lewy body dementia. The different specific conditions affect those living with them in a myriad of ways; however, wandering is a common behaviour associated with most living with some form of dementia.

Symptoms of Dementia that can Cause Wandering Include:

• Memory loss: Individuals may begin their walking with a clear route or destination or goal but forget this due to short-term memory loss.
• Spatial and temporal disorientation: For those with dementia, confusion about what time it is and what is appropriate to do at that time are very common. Equally, many living with dementia may experience spatial disorientation, where their awareness and understanding of the environment around them become less accurate.
• Relieving Discomfort or Pain: Walking around to relieve discomfort or pain is common for most people, not just those living with dementia. It can be difficult for those living with dementia to communicate their needs and why they are in pain, hence walking to ‘remove’ themselves from the situation or feeling.
• Confusion: Due to memory loss and emotional distress, those living with dementia will often experience confusion about where they are and why they’re there. Feeling lost due to perceived unfamiliar surroundings can be distressing and confusing for those with dementia.  Equally, as their condition progresses, many living with dementia will begin to look for people and places from their past.
• Restlessness and boredom: Many living with dementia will experience feelings of restlessness, boredom, and agitation causing them to make repetitive movements, fidget, or walking. This can be caused by over and under stimulation, feelings of anxiety, or conditions like restless leg syndrome.

The Risks of Dementia Wandering

Being missing with dementia puts you at a considerably higher risk level. This level increases even more after the crucial initial 24 hours, where likelihood of serious injury or worse are far higher.

Those missing with dementia are at higher risk of:

• Dehydration
• Missed medication
• Being involved in a traffic incident
• Hypothermia (cold) or hyperthermia (heat)
• Falls
• Physical injury

Not only is there clear and significant risk of some form of physical damage or trauma for individuals with dementia when missing, the emotional and mental upset caused by one of these incidents can be immense. This is the case both for those living with dementia who wander and become lost, but equally so for their loved ones and carers who feel deep anxiety and fear in response.

What to do When Someone with Dementia Wanders and Goes Missing?

Always begin search and rescue efforts immediately upon noticing an individual with dementia is missing. Often individuals who wander are found within 1.5 miles from where they were noticed missing. Individuals with dementia are considered high-risk while missing, so it is critical to not wait 24 hours after they are noticed to be missing. After an initial, brief search of their home and grounds you should call 999 to report them as an individual missing with dementia.

Provide police with as much information as possible, including a description of their appearance and clothing, daily habits, and known locations to frequent. It is very important to highlight if they have any medical needs or conditions or if they may be dressed inappropriately for the weather conditions. Then, notify neighbours or shopkeepers/owners of businesses they may frequent that they are missing and who to call if they encounter or see them.

There are many preventative methods that discourage wandering, however if an individual does wander it is essential that they have some form of identification on them that includes their name and key information including their emergency contact.

How Lumiio Protects Individuals with Dementia Who Wander

One of the key issues that arises when a missing, lost, or confused individual with dementia is found are the information barriers that obscure identification and getting them home safe. For those living with dementia, memory loss and confusion can make remembering or communicating essential information incredibly difficult. This means that when community members and first responders encounter or find an individual with dementia, they are unable to identify them, reach their emergency contact, or provide appropriate care and support.

At Lumiio we designed our line of safeguarding products to protect and safeguard those with dementia who are prone to wandering by breaking down these information barriers. Our smart, wearable IDs store vulnerable individuals’ essential personal information and make it quickly and securely accessible in situations where communication has broken down. Enabled by NFC technology, the same in Apple and Google Pay, the essential information can be retrieved by any modern smartphone through a simple tap and hold against the product.

Lumiio products store an individual’s name, two emergency contacts, and key details like diagnoses, allergies, and communication preferences. Having instant and secure access to this essential information saves vital time, ensuring that those living with dementia can be immediately identified, supported, and reunited with their loved ones.

Alongside selling directly on the Lumiio website, the team has worked with charities, councils, and police across the UK on Dementia Wristband safeguarding initiatives to support those prone to wandering. These initiatives ensure that our wristwatch style wristbands are distributed to vulnerable members of local communities, like unpaid carers. If you are interested in this work and would like to learn more, view our Lumiio Partnership page.

The Importance of Safeguarding Independence for Individuals Living with Dementia

It is crucial that those living with dementia retain their independence for as long as possible. Independence is closely linked to an individual’s feelings of dignity and their sense of self, which can directly improve their quality of life and even potentially slow down the progression of dementia symptoms. Equally, the ability to live at home with independence makes individuals with dementia feel more in control and accomplished in themselves, directly increasing happiness while living with the condition.

Although wandering and walking about are big concerns for the individual with dementia’s safety, we at Lumiio believe that sacrificing independence can be equally dangerous for their well-being. That’s why it is so important to use preventative and assistive safeguarding technology. Between preventative alarms that reduce the likelihood of leaving the house to wander, and safeguarding IDs that ensure safety in the event of wandering, those living with dementia are more protected without hindering their independence.