Dementia and Wandering | Occupational Therapy Interventions & Evidence-Informed Practice Guidelines

Motivation for this article

I recently saw some social media posts from OTs on managing wandering or those who are a ‘flight risk’ with dementia. They offer some great ideas such as environmental barriers to prevent wandering outside the home – that sounds good at least in theory. Modern approaches may even incorporate smart home technologies to prevent night-time wandering in persons with dementia.[1]Ault, L., Goubran, R., Wallace, B., Lowden, H., & Knoefel, F. (2020). Smart home technology solution for night-time wandering in persons with dementia. Journal of Rehabilitation and Assistive … Reference List I have even learned some of these strategies in school (and have been tested on it), but I wondered just how effective are they really? Are we as OTs still making recommendations for wandering that are not evidence-based and the best for our clients?

Economics and the Social Impact of Wandering

These solutions come with a cost. And if they are not that effective, then it is a waste of time and effort and gives families a false sense of security. Family members may get injured, wander off during the day or night, or even get hurt such as by getting into a vehicle and driving, getting lost and not being found, getting injured, or being hospitalized. I frequently get alerts from my local police department’s updates for residents wandering off, only to be found a couple of hours later. Sadly, this isn’t always the case.

Let’s Research Wandering for OT

My question was: is there research behind these recommendations to back them up because we as occupational therapists may make these recommendations (and get tested on them such as on the NBCOT exam)?

What are the best strategies for our family members, patients, and residents to stay safe, and what can we do as occupational therapists if there is a concern for wandering, ahistory of wandering, or our outcome measures indicate a high risk for wandering?

Outcome Measures

There’s actually an outcome measure you can use to assess the risk of wandering. Who knew? The Algase Wandering Scale is a 28-item questionnaire that asks questions such as if the patient:

  • Walks between meals time
  • Walks on their own
  • Walks around restlessly
  • Cannot locate rooms
  • Gets lost
  • Runs off
  • Enters unauthorized areas
  • Walks in circle
  • Gets up and walks during the night, etc.

The authors analyzed its validity and reliability if you are interested in using it in clinical practice. My question is whether it has high criterion validity to compare it to other measures of wandering for this population. The authors conclude that “the AWS may be a useful measure of wandering in long-term care settings, validation of its factor structure and evaluation in cross-cultural samples is needed.”[2]Algase DL, Beattie ER, Bogue EL, Yao L. The Algase Wandering Scale: initial psychometrics of a new caregiver reporting tool. Am J Alzheimers Dis Other Demen. 2001 May-Jun;16(3):141-52. doi: … Reference List

Etiology & Prevalence

Despite this common occurrence, the etiology of wandering is still poorly understood. Researchers posit causes to be biomedical, psychosocial, and environmental. Wandering can either be aimless or purposeful. More than 60% of people with dementia will wander, with some resulting in serious injury or death.[3]Alzheimer’s Disease Facts and Figures, 2016 Alzheimer Association Available at:
http://www.alz.org/facts/ Accessed March 7, 2018

Increased risks for wandering may be indicated by:

  • Algase Wandering Scale score
  • AWS is correlated to the Test for Severe Impairment (A cognitive function assessment) and MMSE.
  • Those who score 13 or less on the Mini-Mental State Exam are likely to wander.[4] Hope T, Keene J, McShane RH, Fairburn CG, Gedling K, Jacoby R. Wandering in dementia: a longitudinal study. Int Psychogeriatr 2001; 13: 137–147.
  • Based on this assumption, those who score low on other similar cognitive assessments are also likely to wander [unverified].
  • Those with functional impairment for ambulation are limited from wandering and wandering behaviors.

Impact

When a person wanders, it can have an emotional and psychological impact (in addition to economic) on the family members. Wandering also affects the wanderer themself, causing them possible psychosocial distress, injury, and harm (as mentioned earlier).

  • Psychosocial distress
  • Cognitive impairment
  • Weight loss
  • Fatigue
  • Sleep disturbance
  • Social isolation
  • Institutionalisation (e.g., into nursing homes)
  • Physical harm (e.g., hypothermia, hypoglycemia)
  • Injury (e.g., falls, use of restraints for management [physical or chemical])
  • Death

Theories

  • Routines – occupational therapists understand the role that routines can have on our daily occupations, including community mobility. Wandering may result from deviated motor plans and sleep disturbances. A study of wanderers compared to non-wanderers found that wanderers had a higher motor reaction to stress.[5]Monsour N, Robb SS. Wandering behavior in old age: a psychosocial study [Review]. Soc Work 1982; 27: 411–416.
  • Psychosocial – unmet needs coupled with environmental factors contribute to wandering. For example, someone may react to an overly noisy environment and wander to avoid this disturbance. Emotions likely also play a role as well. High-risk factors include:
    • Being delusional
    • Anxiety
    • Discomfort
    • Depression[6] Klein DA, Steinberg M, Galik E et al. Wandering behaviour in community-residing persons with dementia. Int J Geriatr Psychiatry 1999; 14: 272–279.
    • Agitation
    • Screaming or outbursts
    • Physical aggression
  • Physiological – someone may have the urge to use the toilet or seek assistance with toileting and wander.
    • Wandering is more prevalent in patients with Alzheimer’s disease compared to patients with vascular dementia.[7]Thomas DW. Understanding the wandering patient. A continuity of personality perspective. J Gerontol Nurs 1997; 23: 16–24; quiz 54–55.
    • More prevalent in those with frontotemporal dementia[8] Snowden JS, Neary D, Mann DM. Frontotemporal dementia
      [Review]. Br J Psychiatry 2002; 180: 140–143.
    • The presence of Lewy bodies in patients with dementia
    • Disturbed nighttime sleep
    • Sundowning?
  • Cognition – there is a close relationship between cognitive dysfunction and wandering that is transcultural.[9]Ata T, Terada S, Yokota O et al. Wandering and fecal smearing in people with dementia. Int Psychogeriatr 2010; 22: 493–500.

Client Perspectives

A study titled, “Wandering Behavior From the Perspectives of Older Adults With Mild to Moderate Dementia in Long-Term Care” found six themes:

  1. Walking as enjoyable
  2. Walking for health benefits
  3. Walking as purposeful
  4. Walking as a lifelong habit
  5. Walking as a form of socialization
  6. Walking to be with animals

The authors conclude that “These results suggest a reconceptualization of wandering behavior from aimless walking and disruption to a purposeful and beneficial activity.”[10]Adekoya, A. A., & Guse, L. (2019). Wandering behavior from the perspectives of older adults with mild to moderate dementia in long-term care. Research in gerontological nursing, 12(5), 239-247. Sounds very OT doesn’t it? It was written by nurses, lol.

So we should ask ourselves as OTs, as these themes are “very OT”, if we can promote these meaningful themes before wandering occurs instead of playing catch-up and preventing wandering on the other end – in the middle of the night when people with dementia want to do any of those 6 things. Or perhaps it’s something else? For example, I like to walk and listen to music. Or I walk to appreciate nature and look at people’s gardens and landscaping (spiritual).

Management/Interventions

Neubauer, N. A., Azad-Khaneghah, P., Miguel-Cruz, A., & Liu, L. (2018). What do we know about strategies to manage dementia-related wandering? A scoping review. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, 10, 615-628.

Early interventions aimed to reduce or prevent wandering included the use of restraints (physical or chemical) and physical barriers – what we often learn as OTs. But these approaches have declined in practice due to negative consequences such as poor physical and social functioning and unwanted side effects from medications.

While nice in theory, high-tech devices like GPS trackers have their limitations and only work after the fact. There is still a search and rescue effort that needs to take place to bring the family member back home safely. There’s cost as well as a learning curve. They run on batteries, so they are also not failproof. There may be poor reception, and so on.

Newer approaches aim to promote safe walking (instead of wandering) and to provide people with balance for their need for autonomy while mitigating risks.[11]Neubauer, N. A., Azad-Khaneghah, P., Miguel-Cruz, A., & Liu, L. (2018). What do we know about strategies to manage dementia-related wandering? A scoping review. Alzheimer’s & Dementia: … Reference List[12]Cipriani, G., Lucetti, C., Nuti, A., & Danti, S. (2014). Wandering and dementia. Psychogeriatrics, 14(2), 135-142.

Interestingly, a systematic review titled, “Effectiveness and acceptability of non-pharmacological interventions to reduce wandering in dementia” found no evidence from RCTs to recommend the use of non-pharmacological interventions to reduce wandering in dementia. More acceptable interventions included walking, exercise, and music therapy. Electronic tagging bracelets have been used with some promise, but there is the issue of ethics and privacy.[13]Miskelly F. A novel system of electronic tagging in patients with dementia and wandering. Age Ageing 2004; 33: 304–306.

In terms of medications, risperidone has shown some benefit to reduce wandering, but increases fall risk. It also is an antagonist of serotonin and dopamine receptors.

So it seems like what we have learned in school (at least what I learned) and what we are recommending as occupational therapists (even to this day what I see on social media) is not the only approach and it may even be outdated and a potential waste of resources.

I always thought it was kind of immoral to ‘trap’ or ‘lock’ up individuals with dementia and to prevent them from wandering. Doesn’t it go against their meaningful motivations for exploring or going somewhere? There is no easy answer as we of course need to balance safety with other factors and we shouldn’t have an older adult wander off at 4 am in the darkness of the night without supervision. Because isn’t that unethical too?

Here is a summary of findings from one article that I found particularly helpful:

Neubauer, N. A., Azad-Khaneghah, P., Miguel-Cruz, A., & Liu, L. (2018). What do we know about strategies to manage dementia-related wandering? A scoping review. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, 10, 615-628.

The authors of these 2 tables conclude, “From this review, we can conclude that many high- and low-tech strategies exist to manage the negative outcomes associated with wandering in persons with dementia. There is a general agreement that wander-management strategies can reduce risks associated with wandering, while enabling persons with dementia with a sense of freedom and independence. Further research could determine the factors that may influence intervention adoption and demonstrate the efficacy of high- and low-tech wander-management strategies”.[14]Neubauer, N. A., Azad-Khaneghah, P., Miguel-Cruz, A., & Liu, L. (2018). What do we know about strategies to manage dementia-related wandering? A scoping review. Alzheimer’s & Dementia: … Reference List

My Thoughts

The management of wandering crosses many domains from ethics to traditional practice to family-centeredness to disease process to psychosocial to culture. While much remains to be solved about the causes and reasons for wandering (and it may still be different for each individual and the reason for why they wander), occupational therapists play a role in advocating for clients and their families to ensure the safety of those with dementia. And in the case of wandering, it’s likely that what the patient wants may not be what the family wants. There doesn’t seem to be a general consensus of what is effective and due to the complex nature of human behaviors and so many variables involving caregivers as well, there is a lack of RCTs (and likely to be the case for a long time) that shows any effective method for managing wandering.

This is where our critical thinking and evidence-informed practice (using our own experience and other expert opinions) come into play. While what we learned in OT school may be still effective, we should also strive to be client-centered and promote meaningful activities that challenge the mind and body. I think that if we program and promote more activities during the day, people with dementia are likely to be more tired, less likely to sundown, and more likely to get a restful night’s sleep – perhaps leading to less wandering. Still, a combination approach of therapy with daytime programming, sleep hygiene, and some form of low-tech gizmos to prevent and monitor for wandering may be best. Just be sure that you respect the patient’s right to privacy and balance it with their autonomy and safety.

Takeaway

Environmental mod is not the be-all end-all for OT interventions to manage and prevent wandering. We should use our critical-thinking to re-evaluate what may be more effective.

Feedback

What has worked for you in your practice or in your (professional or personal) experience? I would love to hear from you. Write me or leave a message in the OT Dude voicemail line to be featured in a video or podcast.

References

References
1 Ault, L., Goubran, R., Wallace, B., Lowden, H., & Knoefel, F. (2020). Smart home technology solution for night-time wandering in persons with dementia. Journal of Rehabilitation and Assistive Technologies Engineering, 7, 2055668320938591.
2 Algase DL, Beattie ER, Bogue EL, Yao L. The Algase Wandering Scale: initial psychometrics of a new caregiver reporting tool. Am J Alzheimers Dis Other Demen. 2001 May-Jun;16(3):141-52. doi: 10.1177/153331750101600301. PMID: 11398562.
3 Alzheimer’s Disease Facts and Figures, 2016 Alzheimer Association Available at:
http://www.alz.org/facts/ Accessed March 7, 2018
4 Hope T, Keene J, McShane RH, Fairburn CG, Gedling K, Jacoby R. Wandering in dementia: a longitudinal study. Int Psychogeriatr 2001; 13: 137–147.
5 Monsour N, Robb SS. Wandering behavior in old age: a psychosocial study [Review]. Soc Work 1982; 27: 411–416.
6 Klein DA, Steinberg M, Galik E et al. Wandering behaviour in community-residing persons with dementia. Int J Geriatr Psychiatry 1999; 14: 272–279.
7 Thomas DW. Understanding the wandering patient. A continuity of personality perspective. J Gerontol Nurs 1997; 23: 16–24; quiz 54–55.
8 Snowden JS, Neary D, Mann DM. Frontotemporal dementia
[Review]. Br J Psychiatry 2002; 180: 140–143.
9 Ata T, Terada S, Yokota O et al. Wandering and fecal smearing in people with dementia. Int Psychogeriatr 2010; 22: 493–500.
10 Adekoya, A. A., & Guse, L. (2019). Wandering behavior from the perspectives of older adults with mild to moderate dementia in long-term care. Research in gerontological nursing, 12(5), 239-247.
11, 14 Neubauer, N. A., Azad-Khaneghah, P., Miguel-Cruz, A., & Liu, L. (2018). What do we know about strategies to manage dementia-related wandering? A scoping review. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, 10, 615-628.
12 Cipriani, G., Lucetti, C., Nuti, A., & Danti, S. (2014). Wandering and dementia. Psychogeriatrics, 14(2), 135-142.
13 Miskelly F. A novel system of electronic tagging in patients with dementia and wandering. Age Ageing 2004; 33: 304–306.
Jeff is a licensed occupational therapist and lead content creator for OT Dude. He covers all things occupational therapy as well as other topics including healthcare, wellness, mental health, technology, science, sociology, and philosophy. Buy me a Coffee on Venmo.