Advocating for Dementia-Friendly Airports

During the weeks of Oct 11 and Oct 18, TSA agents in airports across the nation were given guidance on screening passengers living with dementia and their care partners / traveling companions. This was a result of ongoing work by the Dementia-Friendly Airports Working Group, an advocacy group based in Roseville, Minnesota.

This group was formed in 2018 when Professor Joseph Gaugler, a dementia-caregiver researcher at the University of Minnesota, was lecturing in Australia. He learned of Brisbane Airport’s dementia-friendly designation and met the Australian researchers responsible for this work. When Gaugler returned to Minnesota he contacted Sara Barsel, the founder of the Roseville Alzheimer’s / Dementia Community Action Team, and suggested that the team lead similar efforts locally. Barsel proposed a collaboration with interested members of the Action Team, researchers from the University of Minnesota School of Public Health, and Brisbane Airport project’s lead researcher, Dr. Maria O’Reilly, and the Dementia-Friendly Airports Working Group (DFAWG) was organized.

One of the first projects that was undertaken by DFAWG was an academic level survey of air travelers who were either persons living with dementia or care partners / traveling companions.  This survey was developed to discover what people actually experienced while at the airport and when boarding and traveling on an airplane.  It became obvious that security screening consistently presented difficulties for air travelers.  This became the focus point for a new project.

This summer DFAWG solicited and received an invitation to develop a document to describe best practices when engaging with travelers with dementia, in cooperation with Susan Buckland, a Senior Policy Advisor with the Transportation Security Administration’s Disability Branch of the Office of Civil Rights and Liberties, Ombudsmen and Traveler Engagement.

This document would be shared through TSA internal communications as part of a National Shift Brief. The National Shift Briefs are documents developed by strategic communications and public affairs staff for distribution to all TSA officers at all airports.  These documents are reviewed with all oncoming shifts of TSA staff.

Several members of the Dementia-Friendly Airports Working Group worked on this document, including Paula Rice Biever who has been a volunteer Lewy Buddy with the LBDA since 2013.  She is the facilitator of two LBD support groups (one for care partners and another group that includes persons living with LBD and focuses on their experiences.) She was named LBDA Volunteer of the Year for 2017.

Paula invited John-Richard Pagan, who is an active moderator in the LBDA Facebook group for persons living with Lewy Body Dementia and an advocate with the Dementia Action Alliance, to join the effort.  She felt it was crucial to have the voice of someone living with dementia be heard strongly in this endeavor.  In addition to invaluable comments and edits of the draft of the guidance documents based on his own experiences navigating through airports, John-Richard submitted an essay “In the Words of an Individual Living with Dementia – What He Would Like You to Know.” to include along with the guidance documents for the TSA.

Because of the length of the documents, the documents and John-Richard’s essay were distributed during two consecutive weeks in October, 2020.  Effectively, this put the concerns of travelers living with dementia in front of TSA staff at all US airports for two weeks in a row!

These are the documents that were shared nationally with all TSA agents:

Week of October 11-16, 2020

Screening Passengers with Dementia (Part 1)

Week of October 18-23, 2020

Screening Passengers with Dementia (Part 2)

In the Words of an Individual Living with Dementia

You can find out more about the Dementia-Friendly Airports Working Group by visiting their website.

Materials Distributed to TSA:

Screening Passengers with Dementia Part 1

Screening Passengers with Dementia Part 2

In the Words of an Individual Living with Dementia, John-Richard Pagan