Alzheimer’s Disease and Emergency Management Considerations

By Robert A. Belflower, Ph.D.
Faculty Member, Emergency and Disaster Management

Senility, dementia and Alzheimer’s disease are three terms often used interchangeably to describe elderly people who have lost some cognitive ability. While there is overlap among these terms, they do have different definitions.

Senility

According to Merriam-Webster, senile refers to old age. A senile person may have full cognitive and physical abilities; he or she may be perfectly capable of leading a normal life and caring for himself or herself during an emergency. In common usage, though, senility implies that a person has lost some cognitive abilities.

Dementia

Dementia is a medical condition characterized by both memory loss and other cognitive declines that interfere with a person’s ability to perform normal daily activities. Alzheimer’s disease is the most common cause of dementia, and there is no cure.

Alzheimer’s Disease

According to the Alzheimer’s Association, Alzheimer’s disease accounts for 60-80% of all dementia cases. While Alzheimer’s disease is normally associated with people above the age of 65, it can occur in younger individuals as well.

Growing old, however, does not mean a person will develop Alzheimer’s disease. The Texas Department of Health and Human Services notes that about 10% of the U.S. population develops Alzheimer’s.

Alzheimer’s disease is a deteriorating brain condition caused by cell damage. Early-stage Alzheimer’s patients display memory loss. As the disease progresses, the patient may experience disorientation, confusion and behavioral changes.

Eventually, the activities of speaking, swallowing and walking become difficult. Typically, a person diagnosed with Alzheimer’s lives another four to eight years, but that patient may live an additional 20 years.

Where Do Alzheimer’s Patients Typically Live?

Where do Alzheimer’s patients reside? The simple answer is everywhere.

An early-stage Alzheimer’s patient may live at home, especially if a spouse, another family member, friend or professional caregiver is available to provide any necessary assistance. Other than suffering memory loss, early-stage patients can perform normal living activities.

However, late-stage Alzheimer’s patients lose the ability to carry on a conversation and perform daily living activities. Late-stage patients are more likely to live in nursing homes or assisted living facilities where they can receive 24-hour care.

For instance, they may have difficulty walking or easily lose their balance. Late-stage patients may be confined to a bed or might need a wheelchair for mobility.

Emergency Management Implications for People with Alzheimer’s Disease

Memory loss may cause early-stage Alzheimer’s patients to become easily confused. In the event of a disaster, they may not understand what is going on or why a particular activity such as an evacuation is necessary.

Early-stage Alzheimer’s disease patients still living at home may or may not require additional assistance for evacuation from outsiders such as first responders. Late-stage patients living in nursing homes or similar long-term care facilities will require extra assistance that caregivers may not be able to provide, depending on the quantity of infirm patients requiring evacuation assistance. This extra assistance may include arranging for additional ambulances, buses or vans equipped with wheelchair lifts.

Evacuations can be very debilitating for Alzheimer’s disease patients. Following an evacuation, late-stage Alzheimer’s patients may suffer a physical decline.

Evacuation can also take a mental and emotional toll on Alzheimer’s patients. For my dissertation on how nursing home administrators make the decision about whether or not to evacuate residents, one person I interviewed said of the evacuation, “It was very hard on all of the residents, emotionally, physically, mentally. Being with like 30-something patients for those 14 days, it was like, you’re not going to leave me, you’re not leaving me. The patients themselves, it took a real toll on them.

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“Some of them, after the transfer, and the transfer back, you saw a great physical decline. I’d say within a two or three-month period, we lost patients. So it was very profound for them, and they did not understand. This is their friend. Where is my family? Why are they not here? It’s very hard.

“You’re dealing with frail, elderly patients. The actual transportation problem, where they’re at comfort zone-wise, their comfort zone is in their room, where they’re safe and they’re taken care of. Now emotionally, they’re lifted up out of that spot, taken to an unknown place, where the people they don’t know are taking care of them.

“They don’t know what’s going on. They don’t know that, you know, they don’t have a good feeling. A lot of those things, anxiety alone, will cause issues to the elderly that are disruptive to multiple areas of their body, mentally, physically, everything. So, it, psychologically it will take them down, and everybody understands the depressive aspect in the elderly. Once that failure to thrive kicks in, it’s hard to stop it. You don’t want them to think, ‘Ah, I’m leaving, this must be the end,’ and now emotionally they are done, they’re detached.”

How to Help Alzheimer’s Patients during a Disaster

The Alzheimer’s Association has three guidelines to assist family members or other care providers during disasters:

1. Be prepared. This guideline is similar to preparation plans any individual or family might have. It also includes extra precautions relevant to an Alzheimer’s patient, such as what to do about medications, medical history, and medical devices, such as wheelchairs, walkers, and oxygen.
2. Create an emergency kit. The emergency kit for an Alzheimer’s disease patient should be similar to an emergency kit an individual or family might have. It should be stored so that it can be quickly grabbed and ready to go in a matter of minutes. Wildfires or tsunamis do not always give lots of warning, so it may be necessary to evacuate an Alzheimer’s patient just a few minutes after receiving the warning.
3. Take the correct actions during an evacuation. Keep a family member with Alzheimer’s calm to reduce anxiety, and do not leave that family member alone. Also, share his or her condition with shelter, hotel, and airline staff so that they can provide extra assistance as needed.

Similarly, the American Association of Retired Persons (AARP) has a five-step emergency preparedness plan for senior citizens that is also applicable for early-stage Alzheimer’s patients:

1. Secure vital documents. These documents can include a birth certificate, passport, prescriptions, immunization records, medical insurance cards and any other records that might be required during an emergency.
2. Prepare a basic emergency supply kit. The Federal Emergency Management Agency (FEMA) has an excellent list of the items to include in an emergency supply kit.
3. Develop an evacuation plan. This plan should be rehearsed by everyone living in the household.
4. Distribute information. Local community emergency management agencies should create and distribute plans to their community. It’s also vital to identify individuals in the community who have special needs, such as Alzheimer’s patients, who may require extra support in an emergency.
5. Inspire others to prepare for emergencies. Lead by example. Demonstrate that you are prepared for an emergency to inspire your friends and neighbors to also be prepared for natural disasters.

The local branch of the Council on Aging or the Alzheimer’s Association may have a roster of Alzheimer’s patients living at home who might require extra assistance during an emergency. If you are not familiar with all the local nursing homes and assisted living facilities in your area, you should be.

Your state nursing home association or department of health should be able to provide you with the relevant contact information. During a community-wide evacuation, these facilities may require transportation assistance for late-stage Alzheimer’s patients and other infirm residents.

Emergency Managers Need to Remain Aware of Everyone Needing Extra Help in Their Communities

Emergency managers must be proactive in their communities; it is not enough to issue guidance and directives. We must reach out and make personal contact with members of our communities, especially those who suffer from Alzheimer’s disease and other problems. In addition, we must maintain awareness of the people in our communities who have special needs and be prepared to offer that assistance, especially during emergencies.