Nearly every family caring for an older adult with dementia has met this scene. The person is already at home but insists on "going home". They sit down and stand up again at once, pacing between the rooms. They slip out of the door as soon as the family is distracted for a moment. This behaviour, called "wandering", is what frightens families most, because getting lost can have serious consequences. Wandering is not simply aimless walking caused by a brain that is wearing out. Behind it, the person is often using the abilities that remain to express a need that has not been met. Only by understanding the causes of the behaviour, recognising the real risks, and then using non-drug occupational therapy strategies suited to each case can safety be ensured while the dignity and autonomy of "safe walking" are kept.
What is wandering in dementia?
"Wandering" is not a single action. It is a continuum that runs from walking about without purpose to leaving the home (elopement). To give clinical recognition and academic research a consistent standard, researchers have called for a clear operational definition of wandering, set out along four conceptual dimensions (Algase et al., 2007).
Once wandering is understood as a behaviour with structure and dimensions, the first step avoids labelling the person simply as "troublesome" and moves on to more constructive questions: where is the person trying to go, and what are they looking for?
How common is wandering, and what are the risks?
Wandering is common in people with dementia, and the greatest danger is that it can turn into getting lost, which can threaten life. The figures below show the shape of the risk.
A large analysis of more than 1.59 million Canadian long-term home care service users found an overall recent wandering rate of 3.0%, and the prevalence of recent "critical wandering" in people with dementia was 18 times higher, which confirms that dementia is the core risk factor for wandering (Cruz et al., 2024). When a person gets lost, the outcome can be fatal. Of 673 missing-person cases, 67 people were found dead and 525 survived, and the "length of time missing" was the strongest predictor of mortality (Lissemore et al., 2019). This is why noticing early and finding the person quickly are so important. Wandering is also closely linked to falls. Older adults with dementia fall on average 4.05 times a year, far more than the 2.33 of older adults without the illness, and the difference remains after adjusting for other known risk factors for falls (van Doorn et al., 2003).
Why does the person keep wandering? Understanding the need behind the behaviour
Clinically, wandering is mostly read as an outward sign of "unmet needs". A study of 89 residents with dementia in six care homes found that each resident had on average 3 unmet needs. The most common were boredom or sensory deprivation, loneliness or the need for company, and a wish for meaningful activity. Physical pain and discomfort were often underestimated or missed, and were linked to more severe agitation (Cohen-Mansfield et al., 2015). In other words, instead of struggling with "how to make the person stop", it is better to ask first "what is the person lacking right now".
The most common inner needs
- Boredom or lack of sensory stimulation: nothing to do all day and nothing to hold attention
- Loneliness or need for company: wanting someone to be with them and chat
- No meaningful activity: unable to find anything they can do
- On average each person has 3 unmet needs
Physical discomfort that is easily missed
- Pain and discomfort are often underestimated and go unnoticed
- Basic physical needs such as hunger, thirst and needing the toilet
- Tiredness or not having slept enough
- Unnoticed physical discomfort is often linked to more severe agitation
Common causes of wandering: getting lost, looking for the past and physical discomfort
Put back into daily life, the causes of wandering fall broadly into four types. The first is "disorientation". Even in a familiar home the person cannot recognise the route and cannot find the toilet or bedroom, so they move around trying to reorient. The second is "looking for the past". The person may be looking in their mind for an old home, a former workplace, or a relative who is no longer around, and so insists on "going out" or "going home". The third is "physical discomfort". With pain, hunger or a need for the toilet that the person cannot put into words, walking is the only way to let out the unease. The fourth is simply "boredom and loneliness". When there is no meaningful activity or company all day, walking becomes an outlet for unease (Cohen-Mansfield et al., 2015). Once the type of cause is clear, the direction of management is quite different.
Four non-drug directions in occupational therapy
From the occupational therapy point of view, the core of managing wandering is not to "confine" the person. It is to reduce the unease that triggers wandering and to guide walking into safe space. One study, working within an evidence-based framework, drew up a non-drug intervention programme for wandering in care homes with 21 recommendations across four areas, including carer education, preventing excessive wandering, promoting safe walking and preventing getting lost (Wang et al., 2022). One point must be stated first, however. A Cochrane systematic review of non-drug interventions for wandering in the home setting found no eligible randomised controlled trials, so it could neither confirm nor rule out their benefit, and it noted that high-quality trials in the home are badly needed (Hermans et al., 2007). The strategies below should therefore be used with the principles of "individualised, low risk and keeping autonomy", and adjusted flexibly according to the person's actual response.
1. Arrange a regular daytime programme and exercise
Since wandering often comes from boredom, loneliness and lack of meaningful activity, the most basic response is to fill the daytime hours, but this has to be arranged well.
- A structured combination of activities works best—A crossover randomised controlled trial with 60 participants showed that activities done in the order "physical exercise, then music therapy, then reminiscence therapy" lowered wandering scores step by step (p=0.006 / 0.018 / 0.034), and carer stress eased as well (Dimitriou et al., 2022).
- View exercise realistically—The EVIDEM-E pragmatic randomised controlled trial (131 pairs of patients and carers) found that regular walking alone did not improve behavioural and psychological symptoms (no clear difference in NPI at week 12), but it still reduced carer burden (Lowery et al., 2014).
- Provide meaningful activities the person can do—Arranging activities according to the person's current abilities and interests addresses the three most common problems of boredom, loneliness and having nothing to do (Cohen-Mansfield et al., 2015), so the person does not need to walk about to pass the time.
- Enough daylight and regular exercise—The evidence-based programme for care homes also points out that sufficient light in the daytime, together with regular exercise with someone guiding, is an important measure for preventing excessive wandering (Wang et al., 2022).
2. Environment design: visual cues, hidden exits and safe walking space
The home environment acts like a silent carer. Used well, environment design can reduce wandering caused by disorientation, and can lower the risk of getting lost while keeping the freedom to move.
- Promote safe walking—Clear away clutter on the floor that people can trip over, leave a safe corridor or garden space, give the older adult suitable shoes, and install alarms and motion-sensor lights so that the person can walk safely (Wang et al., 2022).
- Route signs and orientation cues—Use photos, clear signs and handrails to guide the older adult to and from the toilet and bedroom, to reduce walking about because the way cannot be found (Wang et al., 2022).
- Visual barriers to hide exits—Examples are covering the front door (a disguised door), putting black grid tape on the floor at the doorway, or placing attention-catching objects there. These are methods that can be used to help prevent getting lost (Wang et al., 2022).
- Evidence still needs checking case by case—However, a review of exit design in locked care units points out that the literature on grid patterns on the floor, mirrors, murals or concealed door locks is "insufficient and outdated", and the current evidence cannot show which design is consistently effective (Anderson et al., 2023).
3. Technology and identification: GPS tracking, alarms and anti-lost bracelets
If the line of "preventing getting lost" fails, how quickly the person can be found directly decides how serious the outcome is, because the longer a person is missing, the higher the risk of death (Lissemore et al., 2019). Using technology and identification tools well is the key to shortening the time to find the person.
- GPS tracking device—If the person goes out and gets lost, GPS tracking shows the location immediately and helps the family find the older adult as soon as possible. It is an important tool for preventing getting lost (Wang et al., 2022).
- Alarm and sensor systems—Alarms and motion-sensor lights installed at the front door or by the bed can notify the family immediately when the person opens the door or gets out of bed (Wang et al., 2022).
- Identification bracelet—Have the person wear a bracelet printed with the name and a contact number. If the person gets lost, passers-by can contact the family at once. This is the basic safeguard against getting lost (Wang et al., 2022).
4. Carer communication skills: respond to the feeling and avoid arguing
The way a carer responds is itself a clinical intervention. The evidence-based care home programme puts "carer education" first among its four areas (Wang et al., 2022), and communication skills are especially important when the person is wandering.
- Go along with the feeling and do not argue or correct—When the person insists on "going home" or on finding someone, contradicting them directly usually makes them more upset. Responding to their feeling first and then slowly redirecting attention settles the mood more easily than blocking them by force.
- Find the need first, then deal with the behaviour—A person who moves about is most often bored, lonely, wanting to move, or physically uncomfortable (Cohen-Mansfield et al., 2015). Once these needs are found and met, the wandering naturally lessens.
- Carer education comes first of the four areas—Helping carers understand why the person wanders and how to arrange a safe place to walk is the foundation of the whole non-drug programme (Wang et al., 2022).
Research limits and points to note when changing the home environment
When changing the environment, the limits of the current research need to be understood. For exit designs in locked care units (such as grid patterns on the floor, mirrors, murals and concealed door locks), reviewers consider the related literature "insufficient and outdated", and the current data cannot confirm which design always works (Anderson et al., 2023). The Cochrane systematic review of non-drug approaches to wandering at home also found no eligible randomised controlled trials (Hermans et al., 2007). This does not mean the methods above are of no use at all. It is a reminder to families that these methods can be used as supports and tried according to the older adult's situation, together with other measures against getting lost (such as a bracelet and a tracker), and that no single environmental design should be assumed to be foolproof.
Letting the older adult walk with peace of mind in safe conditions
Not every movement has to be stopped. Behind the person's moving about there is an inner need to move (Algase et al., 2007), and blocking them by force each time easily causes arguments and agitation. The evidence-based care home programme specifically lists "promoting safe walking" as a key point: if clutter that people can trip over is cleared from the floor, a safe corridor or garden space is left, and the person wears suitable shoes, they can walk in a safe environment (Wang et al., 2022). In other words, as long as there is no danger of getting lost, falling or going out into the street, instead of stopping the person at every turn it is better to leave a safe route at home for the older adult to walk with peace of mind. This meets the need for activity and also respects the older adult's dignity.
Checklist for preventing getting lost at home
To put the principles above into practice at home, carers can use the checklist below as a start. Since the longer a person is missing, the higher the risk of death (Lissemore et al., 2019), the preparation for preventing getting lost and for finding the person quickly is well worth doing early. The measures below also match, one by one, the four areas of the evidence-based care home programme (Wang et al., 2022).
- Clear away clutter at home that people can trip over, and leave a stretch of safe space for the older adult to walk up and down with peace of mind
- Use photos, clear signs and handrails to guide the older adult to and from the toilet and bedroom, to reduce walking about because the way cannot be found
- Install an alarm or motion-sensor light at the front door, and, according to the older adult's response, try a curtain over the door or concealing the door
- Prepare an identification bracelet printed with the name and a contact number for the older adult
- Provide a GPS tracker if needed, so that the older adult can be found quickly if lost
- Arrange a full programme of daily activities and regular exercise in the daytime, to deal with boredom, loneliness or physical discomfort
- When communicating, respond to the older adult's feeling and do not argue or correct. Settle the mood first, then deal with the problem
Frequently asked questions
Wandering is only one of many challenges in caring for a person with dementia. It is advisable to read the overall framework in occupational therapy for cognitive impairment first, and then to learn about two closely related topics: sundowning in dementia: non-drug management of evening agitation and difficulty eating and refusing food in dementia: occupational therapy strategies.