Evacuation is a crucial component of hurricane emergency response, significantly reducing damage and loss of life during hurricanes. The daunting prospect of home evacuation is profoundly more challenging for family members and other unpaid caregivers living with people with Alzheimer’s or other dementias.
“We had been watching (Hurricane Milton) since the weekend, obviously, along with everybody else, and we assessed whether or not it made sense for us (to evacuate,)” Florida resident Louise Kennedy Converse said in an interview with NPR. “We had a plan. If there was a tornado, we would go into our cars. We had bags packed, but the house is pretty solid. And with my mother-in-law—it just made more sense for her to be here. She has dementia, and we made a decision.”1
As the number of in-home dementia caregivers and the frequency of hurricanes rise in the U.S., the urgency to improve emergency preparedness and response for dementia home caregivers in hurricane-prone areas grows.2,3
Physician’s Weekly (PW) interviewed Elizabeth Edgerly, Ph.D., senior director of community programs and services at the Alzheimer’s Association, to learn how clinicians can address dementia patient caregiver evacuation concerns and equip caregivers with tools and information to prepare themselves and their patients for such events.
PW: How do you recommend clinicians respond to dementia caregivers who express reservations about following home evacuation orders due to difficulty and impact?
Dr. Edgerly: People living with dementia function best when they are in their usual environment and maintain their regular routine. During an emergency, individuals with dementia can become quickly agitated and confused. Caregivers must anticipate and prepare as much as possible for the worst circumstances.
When people living with dementia feel anxious, rushed, and hurried, they often shut down. At that point, it becomes harder to get the person to cooperate and respond in ways that are needed in an emergency. Many may become overwhelmed and respond to their anxiety in various ways—crying, arguing, fighting, wandering, or walking away.
Encourage family caregivers to remain calm and positive during an emergency. Their actions will help set the tone for the person living with dementia. Caregivers should provide frequent reassurance, paying attention to cues that the person may be overwhelmed, such as fidgeting or pacing. If you need to relocate someone with dementia, remind the person that they are in the right place. Avoid arguing with the person. Instead, affirm the person’s feelings, using phrases like, “You’re frightened and want to go home. It’s OK, I’m here with you.” If necessary, use a favorite snack or possession to comfort the person and encourage their cooperation in evacuating.
Is it possible for dementia caregivers to prepare in advance for home evacuation?
While it’s not possible in every emergency—situations like approaching hurricanes or wildfire—it’s important for dementia caregivers to get ahead of the emergency as much as possible.
In these situations, evacuate as soon as possible. This will help the person avoid additional stressors, like being stuck in long traffic delays or feeling rushed. Be sure to alert other family members if you plan to change location.
Consider preparing an emergency supply kit in advance of an evacuation. Pack items in a watertight container and store them in an easily accessible location. Be sure to account for your needs (like prescriptions, important documents, extra cell phone chargers) and the needs of the person living with dementia. Priority items should include copies of important personal and medical documents, medications, a recent picture of a person with dementia (in case they get lost), change of clothes, favorite snacks, and incontinence products. Also, consider bringing along a favorite item, which can provide comfort to the person with dementia during a crisis. If you live in an area where wildfires are a concern, include face masks in the kit, such as the N95 mask used widely during COVID.
If evacuating to a shelter, share a person’s diagnosis with shelter staff so they can help in an emergency. It is also a good idea to insert emergency contact information in the person’s clothing in case they get separated. Include your contact information and those of family members outside the emergency area. Some states offer special needs shelters. These may provide a calmer environment for individuals living with dementia. Families should explore these options before a crisis.
If your loved one lives in an assisted living facility – learn about evacuation plans and special accommodations at assisted living facilities. Learn who is responsible for evacuating residents in case of an emergency.
What should caregivers expect regarding patient reaction/behavior if home evacuation is deemed necessary?
The stress and disruptions in normal routines caused by hurricanes and other emergencies may trigger disease-related behaviors for people living with dementia. These behaviors can be challenging to manage and include:
- Aggression and anger;
- Anxiety and agitation;
- Depression;
- Sleep disturbances and sundowning;
- Wandering; and
- Suspicions and delusions.
Disease-related behaviors may include striking out, screaming, or becoming agitated or emotional. Family caregivers and others need to recognize that these behaviors are not intentional, they are disease related.
Dementia-related behaviors are often a form of communication—the person may be uncomfortable, confused, anxious, or have some basic need, such as hunger, thirst, or bathroom use. As it becomes more difficult for the person living with dementia to communicate their thoughts, feelings, and needs, the person may act out in unexpected ways.
As a first step, try to understand what is triggering the behavior. What is the person trying to communicate? Is the person in pain, cold, hungry, sad, or scared? Is the person bothered by something in their environment, especially one unfamiliar?
Changing the environment or reassuring the person you are there for them can help minimize the behavior. Be patient and reassure the person by using calming phrases and letting the person know you are there to help.
Is there anything else you feel clinicians and dementia caregivers should know?
It’s important to remain vigilant in supporting people living with dementia in the wake of natural disasters, such as the recent Hurricane Helene. Studies show the risk of death rises among older adults with Alzheimer’s or other dementias in the months following exposure to a hurricane. This increased risk could be due to disruption of normal routine, such as access to caregiving, changes in living environment, loss in access to medications, and changes in daily routines.
The Alzheimer’s Association encourages first responders and residents in affected communities to check in on people living with dementia, especially those who may live alone. Recognize that people living with dementia who survive a natural disaster may still need considerable help in the storm’s aftermath.
The Alzheimer’s Association offers additional tips and resources for preparing for emergencies on its website.
READINGS AND RESOURCES
1. A cheese shop owner in Florida describes recovery efforts after her shop lost power [Transcript]. Weekend Edition Saturday. NPR. October 12, 2024.
2. Anand H, et al. HEvOD: A database of hurricane evacuation orders in the United States. Sci Data 11, 270 (2024). doi:10.1038/s41597-024-03100-x
3. 2023 Alzheimer’s disease facts and figures. Alzheimers Dement. 2023 Apr;19(4):1598-1695. doi:10.1002/alz.13016. Epub 2023 Mar 14.
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