My prayers and thoughts are with formal and family caregivers of dementia as they experience the ravaging floodwaters from Hurricane Harvey. I am haunted by the images of nursing home residents sitting in waist deep water. I am grateful for the brave men and women who rescued trapped older adults via boats, jet-skis, and at times, their own backs. To my fellow nurses working with persons with dementia in long-term care facilities affected by Hurricane Harvey, THANK YOU!
The Alzheimer’s Association has a page dedicated with great information about caring for persons with dementia during a natural disaster. Click here. I’m not going to repeat the same good advice, such as making sure you have at least a 7-day supply of medications. This blog is going to build on that information. Readers, please join in with tips and advice from your own caregiving experiences during disasters.
Floods, earthquakes, fires, and other disasters are SCARY! People without dementia are stressed, anxious, and freaked out. Persons with dementia may be even MORE SO, depending on the level of the disease. When I’m overwhelmed, I have trouble remembering directions or paying attention to my surroundings because the fear response is flooding my brain with chemicals that are telling me to RUN, FIGHT, or just FREEZE IN PLACE. This same chemical cocktail is occurring in the brains of people with dementia. But, you and I have sufficient brain matter to override these feelings (OK, in my case, it depends on the day). People with dementia, because of brain shrinkage, may not have the ability to override their fears. In fact, they may see threats, and react with the flight/fight/freeze response, in even safe situations. This behavior is also known as the neurobiology of threat perception.
This means that the person with dementia may push away the very people trying to help them. If able to walk, they are going to try to find somewhere “safe.” And will probably wind up getting lost or going someplace even more dangerous. As dementia advances, people have difficulty making sense of spoken language. You hear a rescue worker telling you to “sit down in the boat;” your family member hears the “WAH WAH WAH” from the old Charlie Brown cartoons. Or the “BLAH BLAH” my teenagers heard every time I spoke.
Use short, 1-step polite commands. “Mom, sit down please.” Use gestures and pantomime while speaking. Keep your voice calm and low-pitched (to counteract the hearing problems that happen after age 40—the ability to hear higher-pitched sounds gradually go away as we age…even faster if we abused headphones or iPod buds). Speak to the person as an adult; if you talk to them like a baby, you will be rewarded with increased agitation.
If you and your loved one are now in a shelter or unfamiliar surroundings (like a friend’s house or an out-of-state relative’s place), your job is to remain with them at all times or have someone stay with them if you need to leave for any length of time. Most people with moderate to severe dementia no longer have the ability to make new memories. They may be unable to “learn” the new layout, even if you stay there for several months.
If in a shelter, speak to the staff about putting a bracelet or some type of tolerable identification (meaning the person with dementia won’t take it off) on your loved one with their name, medical condition, and your name and cell phone number: “Darla James (dementia). Son Robert James, 555-555-5555.” Do the same thing while in your new surroundings but obtain a medic-alert necklace or bracelet with the same information on it. Some localities have Senior Alert or Silver Alert programs involving GPS-enabled bracelets. Contact your local EMS providers for more information.
Because of the challenges of being in a shelter or living in an unfamiliar environment, you may find yourself “doing for” the person with dementia because it is easier on both of you. For example, you may feed your dad or wife because you don’t want them to be stared at by others when they eat with their fingers or use the wrong utensil. DO NOT DO THIS!
When a person with dementia repeatedly performs a task, no matter how simple, they are keeping the memory alive in their brains. Once you take over that task, they are at risk for losing the memory because they do not have enough acetylcholine or healthy nerve cells to relearn that task.
I have seen persons with dementia literally forget how to walk after well-meaning family or formal caregivers encouraged daily wheelchair use to avoid a fall, even if there had been no fall. No, I am not saying to put the person with dementia in danger; I’m simply suggesting that “doing for,” even with the best of intentions, may have crappy consequences.
So, what can you do to minimize the agitation and other fear-based responses to the emergency? As much as possible, put the person with dementia on a schedule. If you can physically handle it, take them to the bathroom every 2-3 hours to avoid accidents and to give them something to do. Tell your loved one, “I have to pee. Come with me. I don’t want to go by myself.”
People need a purpose. Dementia robs people of the opportunity to contribute in a meaningful way, even though that drive is still there. What can you and your loved one do to help out? My adult (sort-of) kids joke (sort-of) about how they are going to place me in a nursing home when (not if, depending on my longevity) I show evidence of dementia. They plan to tell me that I’m in charge of a research study or that I have to go to work. They will dress me in scrubs and a lab coat, and hand me a clip board (I learned to use a computer in mid-life, so that may be the first memory I lose). I will most likely drive the poor nurses crazy, but hopefully, some enlightened nurse will give me empty medication cups and tic tacs (or M&Ms!) and tell me to “count the narcotics” or “pour meds.” Someone will harness my need to have a purpose, enter my reality, and give me a “job” that makes sense to me! What “job” would make sense to your loved one, based on their previous occupation(s) and favorite hobbies or activities?
Finally, if you are able to, share this post with the people you are staying with or who are nearby if you are currently at a shelter. Many people do not understand dementia or simply don’t know what to say or how to act, so they do not do anything. Start the conversation. And let me know how I can help.
And speaking of help, those of you spared this disaster, please donate to your favorite disaster-relief charity or to mine, the Red Cross. I did.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.