Trust Me Now: Emergency Communication with Dementia Patients and Young Children in the Crisis Environment
Study Grant Proposal for Summer II 2006
Ceilidh Charleson-Jennings, Professor of Speech CommunicationRationale
Extrapolating results from Butler and Barnett in a study for Geriatric Nursing, law enforcement analysts suggest that local agencies will be notified of 31,000 missing Alzheimer’s patients each year in the 21st century. The majority of these missing dementia patients are not victims of crime, but misadventure; afforded the opportunity to exit a safe place through an open door, they go. Due to the nature of their illness, many not only fail to recognize they are lost or in danger, but also show fear or aversion to rescue personnel. For caregivers, families, and emergency workers, understanding Alzheimer’s patients and successfully communicating with them in crisis is central to their survival. Indeed, these problems have had recent airplay: instances of positive contact with surviving elderly and the subsequent failure to interact effectively with them for rescue purposes made tragic headlines and disturbing case studies post-Hurricane Katrina.
Such concerns are not exclusive to emergency work with dementia patients. The Mayo Clinic website states: “Of the 837,055 missing persons reported in 2001, an estimated 80 percent were children.” While many of these children are missing due to family abduction related to custody battles, some 30-40% are missing as the result of abduction or misadventure, and an increasing percentage of these children who survive to the point of rescue further their peril by hiding from rescuers, unable to differentiate between friend and foe.
As an educator who teaches professional and family communication constructs and is particularly engaged by crisis communication, I am interested in emergency interaction between crisis personnel and caregivers, children, and the special needs community. As an emergency worker often called upon to find a missing child or dementia patient, I am concerned not only with the job at hand, but also with improved rescue strategies for first- and second-responders assisting these individuals. Success isn’t necessarily determined by pulleys, ropes, and hasty C-collars; effective communication between “victim” and “rescuer” is most consistently a part of successful emergency resolution. Much theory in my academic field concerning communication clarity and coherence assumes that those involved in communication acts possess a full complement of adult faculties and suggests strategies to improve communication between psychologically and intellectually “healthy” individuals. Similarly, in emergency theory, much of the literature assumes that the firefighter, paramedic or police officer who calls out “rescue” will not represent a frightening or hostile figure for the person in jeopardy. This is remiss in emergency communication with the elderly suffering dementia and with children – many of whom have been taught a “Stranger = Danger” course as early as pre-kindergarten.
While some first-responder training is cursory and suggests strategies for assisting a generic “diminished capacities” victim (lumping dementia disorders and children’s behavior together), this study is designed with an awareness of essential differences between these two types of rescue subjects. It will be more specific and conducted in a comparison/contrast fashion, examining the following areas:
I. Framing Peril
On either side of these issues, I will examine professional literature that discusses how dementia patients and children initially perceive their condition of peril – whether lost, trapped, pursued or otherwise in jeopardy – the similarities and differences in how they typically respond to their own emergency circumstance. I will compare this content to that available which has been written by patients themselves.
II. Framing Rescue
I will then study the literature of rescue written for first-responders and contrast it with literature aimed at children and at caregivers of children and the elderly, looking for congruencies and conflicts between what rescuers are taught and what potential rescuees are taught about emergency conditions and rescue. Of particular note here will be the material rescuers are taught about the nature of Alzheimer’s / dementia perceptual schema (is there standardized training?) – how well do emergency workers understand who they are talking to and how they perceive? I am also interested in the possible friction between content children are taught about rescue versus content covering the approach of strangers. This year’s case of missing Boy Scout Brennan Hawkins, who as a Scout had been taught basic “lost” procedure, but who mistakenly evaded rescuers because he’d also been taught by his parents to avoid strangers, is one of the few instances of its kind that had a happy outcome.
III. New research / New strategies
Last, I will review available literature and conduct interviews with early childhood teachers, Alzheimer’s caregivers and rescue personnel discussing new advances and new discussion, if any, in emergency communication with dementia patients and children, comparing these advances to older standards of practice and identifying things that may remain to be done for caregivers, for emergency response personnel, and for children themselves.
Reading List / Weekly Plan – an Overview
Alzheimer’s and Dementia: Framing Peril, Framing Rescue
Weeks 1-2: Works for caregivers and/or emergency personnel that discuss how dementia patients understand their location, condition, and strangers. The works below were recommended by the National Alzheimer’s Association.
* The Thirty-Six Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss, Nancy Mace
* There’s Still a Person In There: A Guide to Treating and Coping with Alzheimer’s, Michael Castleman
* Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing With the Disease, Joanne Kunig Coste
In addition to the above works, during the course of the study I will inevitably review emergency-related articles from specific issues of Alzheimer’s and Dementia, The Journal of the Alzheimer’s Association.
Works / Accounts by patients themselves. This insider’s view of memory loss and temporal/spatial dysfunction will either corroborate or contradict the professional assessment of this condition in the works above.
* Living in the Labyrinth : A Personal Journey Through the Maze of Alzheimer's, Diana McGowin
* Losing My Mind: An Intimate Look at Life With Alzheimer’s, Thomas DeBaggio
* My Journey Into Alzheimer’s Disease, Robert Davis
Children in Trouble: Framing Peril, Framing Rescue
Weeks 3-4: The literature of emergency for children about strangers or rescue; works for parents about what to teach children on these topics.
Books for children:
* Who is a Stranger and What Should I Do? Linda Walvoord Gerard
* The Berenstein Bears Learn About Strangers
* What to Do If You Get Lost (The Abduction Prevention Library), Cynthia MacGregor
* The National Association for Search and Rescue’s Hug-a-Tree Program:
http://www.nasar.org/nasar/hug_a_tree_program.php
* FEMA’s website: http://www.fema.gov/kids/ -- a variably effective online resource that teaches children to be pro-active in emergency and trust adults (but includes a dubious downloadable coloring book for small children that counsels them to stay home and prepare to take shelter during a tornado, then follows with a picture of the family attempting to speed away from an approaching cyclone in a car!). Developed prior to the 2005 hurricane season, this resource will likely see some development and alteration in the coming months.
Books for Parents:
* Protecting the Gift: Keeping Children and Teenagers Safe (and Parents Sane), Gavin DeBecker
* Not Everyone is Nice: Helping Children Learn Caution With Strangers, Fredrick Allimonti
Response Personnel: Notes from the Search Field on What’s Right, What’s Wrong
Weeks 5-6: Rescuer accounts / research on emergency assistance for children and the elderly, which include communicating through a subject’s temporal and spatial disorientation and how psycho-emotional responses from the rescuer can contribute further to the problem.
* Lost: A Ranger’s Journal of Search and Rescue, Dwight McCarter and Ronald Schmidt
* The Lost Alzheimer’s and Related Disorders Search Subject: New Research & Perspectives, Robert Koester
* Children’s Searching: The Development of Search Skill and Spatial Representation, Henry W. Wellman
* Heroic Efforts: The Emotional Culture of Search and Rescue Volunteers, Jennifer Lois
Interviews with teachers of young children, dementia caregivers and emergency / rescue personnel. Preparation for these interviews will include, where possible, a pre-reading of the training material they receive on emergency circumstances, their students, patients or possible search victims. The goal of these interviews is specific, direct question and comment on available training as compared to the success of efforts to recover these subjects from peril. These interviews will explore what works, what does not, and what is yet needed for effective emergency interaction with children and dementia patients.
Conclusion
Crisis communication is an emerging sub-category in my academic field, answering a need that has gone too long unaddressed, and it is a type of communication I’m not only interested in, but have to use on a fairly frequent basis. Additionally, a large percentage of my students are parents of young children; a significant number of them plan to be teachers, and among that group are many who plan to teach children under the age of fourteen. Another significant group of students includes those who are or plan to be police, firefighters, or EMT/paramedic personnel. While these students (and I) will no doubt be able to benefit in understanding and communication strategy from this study, its outcomes may also be significant to other faculty in these related departments and fields, to faculty/staff/community members who have small children or care for relatives with dementia, and community or professional groups concerned with these issues as well. Beyond the specified presentation designated by this study grant, I hope to contribute this information to others who need it – whether in print or presentation form.