Emergency preparedness is complicated for anyone. For a person living with dementia, it can be overwhelming, terrifying, and — without thoughtful, individualized planning — genuinely life-threatening.
Research published in The Gerontologist found that disaster preparedness is experienced as one of the most challenging responsibilities of dementia caregivers, with barriers including cognitive and behavioral unpredictability, limited caregiver capacity under stress, and a near-total absence of dementia-specific guidance in mainstream emergency preparedness programs (Peterson et al., 2024). A 2019 national survey of aged care facility managers found that while two-thirds recognized the unique needs of residents with dementia during disasters, significant gaps remained in their evacuation plans — particularly around behavioral management and adequate staffing resources (Schnitker et al., 2019).
As occupational therapists, we spend our careers helping people with cognitive impairment participate meaningfully in daily life. The question is: how often are we extending that expertise to disaster preparedness? For clients with dementia, a well-designed, OT-led emergency plan is not an optional add-on. It is essential clinical care.
Why Dementia Fundamentally Changes Disaster Risk
The behavioral, cognitive, and sensory features of dementia create a constellation of risks during emergencies that standard preparedness resources do not address.
Consider what a sudden evacuation actually involves. There is a loud, unexpected alarm. The familiar home environment is abandoned. Instructions must be understood and followed quickly. Strangers appear. New spaces must be navigated. Each of these elements is a significant trigger for a person living with dementia.
Research on the evacuation of nursing home residents during Hurricane Gustav found a statistically significant increase in mortality at 30 and 90 days post-evacuation among residents with severe dementia compared to those who sheltered in place — a finding that underscores the profound physiological and psychological burden that emergency displacement places on this population (Brown et al., 2012). The destabilization of routine, environment, and familiar relationships is not merely distressing for a person with dementia — it can be medically dangerous.
From an OT perspective, each of the following is a clinical trigger point requiring advance planning:
- Sensory overload from sirens, crowded shelters, and unfamiliar smells
- Disorientation and confusion from loss of environmental anchors
- Communication breakdown when the person cannot process or retain verbal instructions
- Resistance to evacuation due to fear, confusion, or misperception of the situation
- Caregiver dysregulation when the person who provides the client’s emotional anchor is under extreme stress
An OT-Centered Framework for Dementia Disaster Planning
1. Start With the Occupational and Sensory Profile
Every disaster plan for a client with dementia should begin with what the OT already knows from the occupational and sensory profile: What inputs are calming? What triggers escalation? What communication strategies work when the person is distressed? What routines provide the most stability?
This information — which OTs routinely gather as part of evaluation — is the clinical foundation of a realistic evacuation plan. A sensory toolkit assembled in advance (a familiar playlist, a comfort object, a preferred scent) can make a measurable difference in the client’s ability to remain regulated during displacement (Peterson et al., 2024).
2. Create a Dementia Emergency Identification Card
In collaboration with the family caregiver, develop a laminated emergency ID card that accompanies the client at all times. Effective cards include:
- Preferred name and appropriate forms of address (“She goes by ‘Bea,’ not Beatrice”)
- Two to three behavioral calming strategies (e.g., “Hum ‘Amazing Grace’ — she immediately becomes calm”)
- Current medications, dosing schedule, and prescribing physicians
- Known behavioral triggers to avoid
- Two emergency caregiver contact numbers with relationship listed
- A recent, clear photograph
This card enables first responders, shelter staff, and volunteers to interact with the client in a way that reduces distress rather than compounding it — a simple tool with potentially significant impact.
3. Prepare the Caregiver as the Primary Intervention Target
The research is clear: caregiver capacity is the single most significant determinant of how well a person with dementia navigates a disaster (Peterson et al., 2024). OTs can provide caregiver-specific education covering:
- How to frame and communicate the evacuation in a way that minimizes resistance (e.g., “We’re going on a trip, Mom — I have everything packed”)
- How to maintain simplified daily routines within a shelter or unfamiliar environment to reduce behavioral escalation
- How to recognize and respond to behavioral deterioration that is a stress response rather than a clinical decline
- How to identify and access respite and mental health support during prolonged displacement
This is occupational therapy in one of its most essential roles: equipping caregivers with the skills to protect their family members under conditions of extreme stress.
4. Address Wandering Risk Proactively
Wandering is one of the most dangerous behaviors associated with dementia under ordinary conditions. In the disorientation and chaos of a disaster, that risk multiplies dramatically. OTs can help families:
- Register with local Safe Return programs and wandering alert networks
- Establish GPS tracking or monitoring solutions before a crisis occurs
- Create environmental modifications — door alarms, visual barriers, motion sensors — in both the home and any identified shelter or backup location
These are preventive interventions that fall squarely within OT scope and can literally save a client’s life.
5. Build a Portable, Stress-Proof Medication System
Cognitive function in dementia is highly sensitive to medication consistency. Missed doses during multi-day displacement can trigger functional declines that outlast the emergency itself. OTs can help caregivers build a portable medication management system: a pre-packed, clearly labeled 72-hour pill organizer; a written medication list with dosing times and photos of pill appearances; and a laminated protocol for what to do if displacement extends beyond 72 hours (e.g., emergency contacts for prescribing physicians, instructions for requesting emergency refills from a pharmacy).
6. Grade the Evacuation Experience Through Practice
We do not introduce a complex, novel task without preparation, assessment, or grading. We build. The same principle applies here.
Practice the evacuation sequence in carefully graded steps:
- Walk to the front door and outside on a calm afternoon, framed as a short walk, not a drill
- Take a “road trip” to the identified shelter or backup location during a non-crisis period — frame it as a visit to meet a new place
- Practice the words to use: calm, short, reassuring sentences that match the client’s processing level
- Rehearse the transition to the car with all necessary items, so the sequence becomes familiar
Brown et al.’s (2012) research on the mortality effects of emergency evacuation in dementia strongly suggests that the novelty and disruption of an unplanned evacuation contributes directly to adverse outcomes. Graded preparation reduces that novelty. It is both good occupational therapy and good evidence-based practice.
The Community-Level Role for Trained OTs
OTs trained in dementia-specific disaster preparedness can also contribute at the systems level: training emergency shelter staff on behavioral approaches to dementia, educating first responders on recognition of and de-escalation with individuals who have cognitive impairment, and advocating for dementia-specific protocols within local and regional emergency management plans (Dmytryk, 2023; Gill, 2025). Peterson et al. (2024) specifically identified the development of dementia-caregiver-focused community interventions as a critical unmet need in disaster preparedness infrastructure. Occupational therapy is ideally positioned to fill that gap.
Ready to Build These Skills?
The AOTA-approved course Disaster Preparedness, Response & Recovery: The Role of OT from The Home Accessibility Therapist LLC includes dedicated content on planning for clients with dementia and autism, alongside practical checklists, assessment frameworks, and client education resources ready for immediate clinical use.
At $49 for 0.5 AOTA-approved CEUs, it is one of the most targeted and impactful professional development investments available for OTs working with vulnerable populations.
👉 Register today: www.thehomeaccessibilitytherapist.com/Disastercourse
References
Brown, L. M., Dosa, D. M., Thomas, K., Hyer, K., Feng, Z., & Mor, V. (2012). The effects of evacuation on nursing home residents with dementia. American Journal of Alzheimer’s Disease & Other Dementias, 27(6), 406–412. https://doi.org/10.1177/1533317512454709
Dmytryk, L.F. (2023). Disability-inclusive disaster risk reduction. American Occupational Therapy Association AOTA SIS Quarterly — Home and Community Health. https://www.aota.org/publications/sis-quarterly/home-community-health-sis/hchsis-11-23
Gill, P. (2025, September 15). Roles of occupational therapists: Disaster preparedness and recovery. Elmhurst University. https://www.elmhurst.edu/blog/roles-of-occupational-therapists-disaster-preparedness-and-recovery/
Peterson, L. J., Hackett, S. E., Dobbs, D., & Haley, W. E. (2024). Dementia caregivers’ perspectives on disaster preparedness: Barriers, resources, and recommendations. The Gerontologist, 64(3), gnad076. https://doi.org/10.1093/geront/gnad076
Schnitker,L, Fielding, E, MacAndrew, M, Beattie, E, Lie, D, FitzGerald
G. A national survey of aged care facility managers’ views of preparedness for natural disasters relevant to residents with dementia. Australas J Ageing. 2019;38:182-189. https://doi.org/10.1111/ajag.12619
Leave a Reply