There are two primary environments in which those with dementia typically reside: a household setting, and residential care facilities. Nursing considerations can vary based on the patients’ living situation and their stage of progression with cognitive impairment. More than four times as many people with dementia live in community settings than in nursing homes. Most of their care is provided by unpaid family members. 

Given the escalation in disasters due to man-made and weather-related emergencies, it’s crucial to prepare for the unique issues facing those with dementia and their caregivers – especially when ‘stay-or-go’ decisions must be made.  ‍

Impact of Dementia Patients on Nurses

One of the many issues involving dementia is the burgeoning need for caregivers. From 2020 to 2030, 1.2 million additional workers will be needed to care for people living with dementia. This increase is projected to be the largest worker gap in America.

A related issue is the requirement for nurses and other potential caregivers to build awareness, skills, and specialized knowledge about dementia patients and the many others in their environment who are affected.

Types of Dementia

According to the Alzheimer’s Association, “Dementia is a general term for loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life.” While Alzheimer’s is the most common cause of dementia (60-80% of cases), there are many other types of cognitive impairment, some of which are reversible. For example, reports from the National Library of Medicine suggest that low levels of vitamins D and B12 could be factors.

Think of dementia as an umbrella term for a collection of symptoms caused by abnormal brain changes. Other types of dementia include:

-       Vascular (microscopic bleeding and blood vessel blockage, as from a stroke; the second most common cause of dementia)

-       Lewy Body (abnormal deposits of a protein called alpha-synuclein in the brain)

-       Frontotemporal (damage to neurons because of abnormal deposits of tau and TDP- proteins)

-       Other, including Huntington’s

-       Mixed, from more than one cause – such as having both Alzheimer’s and vascular dementia. In addition, people with dementia frequently have comorbid health conditions.

Dementia Demographics

According to a World Health Organization post on March 15, 2023, “More than 55 million people have dementia. Over 60% of them live in low and middle-income countries. Every year there are nearly 10 million new cases.” (To focus on this global issue, World Alzheimer’s Day is recognized as September 21.) Not only do women experience higher disability and mortality due to dementia, they also provide 70% of the care.

U.S. census data reveals that the population age 65 and over grew nearly five times faster than the total population over the past century: 55.8 million in 2020, or one in six Americans. Advanced age is one of the risk factors for dementia. Of the seven million Americans with dementia, more than six million are living with Alzheimer’s – a number that’s expected to grow to 13 million by 2050. One in three seniors dies from dementia, which kills more than breast cancer and prostate cancer combined. Over 11 million people in the U.S. provide unpaid care for those with dementia. The lifetime risk for Alzheimer’s in particular, by the age of 45, is one in five for women and one in ten for men.

How Emergencies Exacerbate Symptoms

The primary disaster threat for those with dementia is the abrupt routine change. When those with dementia experience sudden changes in their routine, their schedules for sleeping, eating, taking medications, and daily life are disrupted. The impact is more profound when they must travel to unfamiliar surroundings – someone else’s home, a hotel, or especially an emergency shelter. The increased risk of wandering and agitation that results is particularly upsetting for their weary caregivers.

Adapting the “Preparedness Cycle” for Dementia

Nurses can apply special considerations for people with dementia during each of the four stages of the preparedness cycle. Here are some examples.

Mitigation – Encourage families to reduce the patients’ vulnerability by preventing emergencies, and minimizing the effects if an event occurs. Such measures include fall prevention (removing trip hazards), home safety (preventing exposure to electrical wires and other hazards), and weather awareness (having generators and flashlights on hand). 

Preparedness – Create a 72-hour kit specific to the needs of the person with dementia. The patient may benefit from unique comfort items and snacks, current medications, soothing hand lotion, extra reading glasses and hearing aid batteries. Insert photos of the person with a trusted caregiver. Keep prescription and physician information on hand. Consider registering the person with emergency management agencies or a medical special needs database for your community. 

Response – Provide criteria to help caregivers decide when it’s appropriate to shelter-in-place or evacuate. Encourage them to develop contact lists and stay connected with those who can help in such situations.

Recovery – Recognize that the return to home could reveal changes in the environment (broken windows, flooded basements), and the need for extra cleanup and restoration. The disaster may cause trauma, stress, anxiety, and grief, coupled with economic impacts. Solutions include building social connections and fostering community resilience, before the disaster strikes.

Resource materials include a nine-page toolkit on Disaster Preparedness for people with dementia and their caregivers, and tips on Preparing for Emergencies from the Alzheimer’s Association.

Nurses are compassionate problem-solvers. When they equip themselves with the appropriate knowledge and resources in advance, recovery from disasters involving those with dementia and their caregivers are likely to have the best possible outcomes.

‍Nancy Burns (EMT, CHEP, AFAA, AHA-I) is the Upper Merrimack Valley Medical Reserve Corps Coordinator at the Westford, MA Health Department. Learn more about the national MRC program and how to support their efforts here.