During a disaster, residents with dementia still need consistent care

In September 2006, a national coalition of long-term care and consumer organizations released dementia care guidelines in disaster situations, including a pandemic/epidemic. Managing Editor Sandra Hoban recently spoke with Peter Reed, PhD, MPH, senior director of programs for the Alzheimer’s Association, about the importance of preparedness.

Although disaster response has been an important factor in long-term care for quite a while, last year’s hurricanes reinforced the urgency and importance of having effective plans in place to protect residents, including those with dementia. The special needs of these residents can’t be ignored even in times of crisis—which means that seniors may have to be looked after by lay people, unlicensed staff, or volunteers. Recognizing this possibility, the Alzheimer’s Association, the American Association of Homes and Services for the Aging, the American Health Care Association, the American Health Quality Association, the American Medical Directors Association, the National Association of Directors of Nursing Administration, and the National Center for Assisted Living came together to study and recommend crisis strategies in the event that unlicensed staff and/or lay people are called upon to care for and assist residents with dementia during a major disease outbreak or disaster. Planning for a Pandemic/Epidemic or Disaster: Caring for Persons With Cognitive Impairment (available at: https://www.ahca.org/flu/pandemic_dementia_care.pdf) provides a wealth of insights and a commonsense approach on caring for residents with cognitive impairments in emergencies. “Although disaster plans exist at the facility level, this document, created as a companion guide to the disaster-response plan developed by the Centers for Disease Control and Prevention, brings nationwide consistency to an approach for helping people with dementia,” says Peter Reed, PhD, MPH, senior director of programs for the Alzheimer’s Association.

According to the coalition report, approximately 50% of nursing home residents have dementia, with 26% displaying mild cognitive impairment. In assisted living settings, nearly 42% of residents have some form of dementia. Therefore, in stressful times, when change is occurring, it is especially important that people with Alzheimer’s and dementia receive consistent, effective care. Upheavals in routine can overload the capacity of residents with dementia to act appropriately. “Whether caused by a pandemic, weather event, or industrial catastrophe, a situation may well arise in which your adequately trained staff cannot be drawn upon at the moment to provide care,” Reed notes. Fear, overstimulation, pain, or panic can trigger challenging behaviors that cannot be ignored, no matter who is or isn’t available.

When trained, licensed staff is unavailable, it becomes ever more important for others to know the correct way to approach residents. The guidelines created by the coalition provide basic, reliable instruction that can easily be incorporated into a facility’s disaster planning and training in-services. “They outline ways for volunteers or other lay people to get a basic understanding of how to engage residents with dementia in a meaningful manner that will provide some comfort and continuity of care during a crisis,” Reed says. For example, it is recommended that a personal information form (prepared according to HIPAA guidelines) be posted in an easily accessible place, such as inside a closet door. Listing information such as what the resident prefers to be called, cultural background, and hobbies will give the temporary caregiver some sense of who the person is. In addition, the form should include pertinent behavioral notes (what upsets the resident, what calms the resident down) and other information, such as eating and drinking patterns and abilities.

“It is important to emphasize that this plan is not meant to be a substitute for training,” Reed notes. It is a tool for lay individuals who have never received training yet are being called upon to offer help during a crisis. The professionals who provide ongoing care to this population are well versed in the proper protocols. Planning for a Pandemic/Epidemic or Disaster outlines recommendations and procedures targeted to supplemental staff, volunteers, or other individuals to equip them with the basic information they need to provide effective, calming care.

Every facility needs to adopt procedures based on its individual features, circumstances, and the population that it cares for. “Seek community alliances and resources before they are needed so that if disaster strikes, partnerships are in place,” Reed explains. By incorporating this targeted training into basic training and procedures, auxiliary lay workers can be immediately effective if called upon.