‘Sick with stress’: perspectives on airport travel from persons living with dementia and their travel companions

Abstract

Persons living with dementia continue to desire and need air travel. This study gives voice to the current lived experiences of persons with dementia and their caregiving travel companions using U.S. airports. Forty-eight persons living with dementia and 176 travel companions shared information about themselves and their airport experiences through a web-survey. Results identified common challenges and ways in which U.S. airports could be improved to better serve persons living with dementia and their travel companions. Anxiety, understanding signs and announcements, and getting lost or separated were primary travel concerns. Participants detailed themes of frustration with security and locating family restrooms or quiet spaces. Many are unaware of the services available to assist travelers. Among other recommendations, participants suggested staff training on hidden disabilities to improve air travel experiences. Results inform ongoing efforts to develop dementia-friendly airports and support continuing independence and quality of life.

Points of interest

• This study surveyed the air travel experiences of persons living with dementia and their travel companions to understand how going through the airport can be made more comfortable for them.

• Primary concerns voiced by the participants were anxiety and frustration at security, trouble finding their way around the airport, and not enough quiet spaces or family bathrooms.

• Participants shared that better staff training, hidden disability badges, and more wheelchair or electric cart services could help travelers like them and other persons living with disabilities.

• Airport updates that reduce noise and add more family bathrooms can make airport travel better for persons living with dementia and their travel companions.

• This paper shows how persons living with dementia and their travel companions’ could be more comfortable in public spaces like airports if we use their experiences and opinions to make improvements.

Keywords:

• Dementia
• cognitive accessibility
• dementia caregiving
• air travel
• mixed methods
• qualitative

1. Introduction

Air travel has become more accessible, and as the population ages, increasing numbers of older adults are choosing to fly (National Academies of Sciences 2014). Older adults tend to have more physical and cognitive impairments which may affect their ability and comfort navigating airport spaces (Reed 2007). Increased lifespans and the aging Baby Boomer generation means the number of persons living with dementia is increasing (Alzheimer’s Association 2021). A dementia diagnosis does not necessarily end the desire or need for travel (AJDC Team 2016; O’Reilly and Sheperd 2015). Furthermore, continued involvement in social and leisure activities, like travel, supports quality of life and improved self-confidence (Phinney et al. 2016; Canevelli, Blasimme, and Cesari 2017; Bauer 2018). Promoting independence and empowering persons living with dementia to remain active citizens through supportive air travel reinforces the World Health Organization’s age-friendly policies initiative and dementia awareness campaign (Reed 2007). The social model of disability recognizes that infringement of a disability on daily living can be reduced by changing the environment and the way people living with disabilities are treated (Kennedy and Minkler 1998; Shakespeare 2016).

Scant research evidence informs medical, caregiver, and airport guidelines to support travel for persons living with dementia (Bauer 2019). A review by Sadlon et al. (2021) relied on professional websites and three case studies to describe current best practices and recommendations for air travel for a person living with cognitive impairment. These recommendations generally focus on physical symptoms that persons living with dementia may experience in-flight and post-flight (e.g. dehydration, delirium from jet lag) and less on their experiences in the airport. However, as noted by the Alzheimer’s Association (2020), over-stimulating and unfamiliar environments like airports can exacerbate adverse dementia-related outcomes like confusion and agitation. New rules and regulations established to reduce the probability of SARS-CoV-2 transmission during the COVID-19 pandemic may also increase confusion and stress (Lancet Infectious Diseases 2020). Research is needed to examine how travelers with dementia and their companions experience airports and their services to inform improvements.

While research has informed dementia-friendly neighborhoods and other outdoor spaces (Mitchell and Burton 2006; Mitchell and Burton 2010), the dementia-friendliness of indoor spaces has primarily evaluated wayfinding residential buildings and artificial virtual reality environments (Davis and Weisbeck 2016; Marquardt 2011). The accessibility of indoor public spaces remains largely overlooked (Blackman et al. 2003; Fleming et al. 2017). Airport environments may require specific attention given their potential to overwhelm persons living with dementia in design and complicated processes (O’Reilly et al. 2017). This research thus addresses a critical knowledge gap. It presents novel data and includes the voices of persons living with dementia and their caregiving travel companions as they describe their challenges and possible solutions for common obstacles to comfortable air travel.

2. Methods

This exploratory study collected both quantitative (numeric survey data) and qualitative (open-ended text responses) data at the same time to holistically describe the air travel experiences of persons living with dementia and their travel companions (i.e. a parallel mixed methods design; Creswell and Plano Clark 2011; Morse and Niehaus 2016). The data comes from an online survey the Dementia-Friendly Airports Working Group administered June 2019 to September 2019.

2.1. Participants and procedures

To be included in the study, participants had to self-identify as either a person living with dementia or be a travel companion of persons living with dementia. Participants did not need to have their travel partner take the survey, but the survey could be done with the assistance of another person. All participants provided informed consent. Those identifying as persons living with dementia and taking the survey on their own demonstrated they were able to provide consent by passing the UCSD Brief Assessment of Capacity to Consent (UBACC), a short quiz assessing that they understood the study’s purpose and process (Jeste et al. 2007). All survey procedures were conducted online through Qualtrics survey software. The study was approved by the University of Minnesota Institutional Review Board [#STUDY00006695].

Participants were recruited across the U.S. through dementia advocacy groups and their members’ social networks. Participants were also recruited via a university-maintained registry of professional and family caregivers who had given permission to be contacted for future study opportunities. A total of 264 people consented to participate in the survey, composed of 201 travel companions and 77 persons living with dementia. However, some consented individuals did not advance into the survey. We included those who at least provided age and gender (among the first questions), a total of 224 participants (176 travel companions and 48 persons living with dementia).

2.2. Measures

In addition to participant characteristics, we asked a variety of open and close-ended questions on a range of air travel-related experiences: booking, processing through security checkpoints managed by Transportation Security Administration (TSA) agents, navigation, boarding, flight, deplaning, and customs, if international travel occurred while living with dementia. Participants were asked how their experiences in each of these areas could be improved. Although the instructions and questions specifically inquired about their most recent flight, participants had the opportunity to discuss other experiences in the open-ended questions. Results presented in the current paper focus on processing through TSA security, navigation of the airport, and use of airport spaces at their departure airport.

2.3. Analysis

Quantitative measures are presented with descriptive statistics performed with Stata16 (StataCorp 2017). Because not all questions were presented to all participants (given survey logic based on how previous questions were answered) and many items were ‘select all that apply,’ data presented are the proportion of the total count for each question. Qualitative data were organized in Microsoft Excel and reviewed inductively for themes guided by the overarching question: ‘What were facilitators and challenges to safe and comfortable air travel for persons living with dementia?’ Following Braun and Clarke (2006) steps for thematic analysis, the first author (CMP) reviewed all text-based responses to the security, navigation, and airport space-related questions to identify commonly described experiences. Data and themes were then shared with co-authors (RWB, SB, TLS, JMF) for consensus on findings. Results were member-checked for credibility and authenticity by members of the Dementia-Friendly Airports Working Group, composed of professional and family caregivers of persons living with dementia, persons living with dementia, and researchers in the field. The validity of the findings is further enhanced by pairing together broad quantitative and in-depth qualitative data for areas of overlap and difference (Creswell 2014).

3. Results

Forty-eight persons living with dementia and 176 travel companions provided data on their air travel experiences. The majority of travel companions identified as female (87.5%) and averaged 59.8 years old (SD = 13.0), and their care recipients living with dementia were 43% female and aged 75.4 years (SD = 10.0). Persons living with dementia taking the survey for themselves were two-thirds female (66.7%) and averaged 63.3 years old (SD = 10.3). Top air travel issues for persons living with dementia and their travel companions were getting lost or separated, experiencing anxiety, and being unable to understand announcements or signs. Almost all reported changing their travel habits since traveling as, or with, persons living with dementia. Some of these changes included the person living with dementia not travelling alone, taking fewer trips, or taking more non-stop flights. Very few travel companions indicated that they had stopped traveling with their care recipient altogether. Table 1 provides more detail on travel concerns and characteristics.

Table 1. Characteristics of participants and travel companions’ care recipients living with dementia.

	Travel companions	Care recipient with dementia*	Persons living with dementia
Typical no. air travel trips since dementia onset
< 1 per year	30.3%	–	27.3%
1 per year	29.7%	–	13.6%
2 per year	28.4%	–	31.8%
> 2 per year	11.6%	–	27.3%
Air travel changes since dementia onset
Always travel with a companion	32.5%	–	25.7%
Reduced frequency of air travel trips	30.6%	–	28.4%
Only fly non-stop flights	20.5%	–	23.0%
Only take shorter plane rides	8.8%	–	6.8%
Other	6.0%	–	13.5%
No change	1.6%	–	2.7%
Cognitive or physical issues during air travel
None	63.6%	3.1%	12.4%
Getting lost or separated from travel companion	9.1%	22.7%	20.2%
Hearing loss	8.0%	16.2%	12.4%
Incontinence	4.3%	12.6%	11.2%
Speech impairment	3.2%	7.6%	11.2%
Vision loss	3.2%	7.6%	6.7%
Wheelchair user	3.2%	6.2%	1.1%
Other	2.1%	9.0%	7.9%
Hallucinations	1.6%	5.9%	5.6%
Other mobility impairment	1.6%	9.2%	11.2%
Air travel concerns
Anxiety	26.0%	–	26.9%
Unable to understand announcements or signs	23.6%	–	21.0%
Getting lost or separated from travel companion	22.3%	–	20.2%
Need for quiet places	13.4%	–	19.3%
Incontinence	10.0%	–	5.0%
Other	3.8%	–	4.2%
None	0.9%	–	3.4%

Note: *=As reported by travel companion; **=Since travel companion’s care recipient onset or themselves; Participants could select multiple answers.

We identified three overarching themes in the open-ended qualitative responses: 1) airport security and staff interactions can help or hinder positive air travel experiences, 2) problems with airport navigation, and 3) unaccommodating physical spaces. Themes are detailed below along with solutions suggested directly by the participants to improve air travel experiences. Participant type is noted in attributed quotes with pseudonyms: ‘P’ for persons living with dementia and ‘C’ for travel companions. A summary of qualitative themes and participant recommendations can be found in Table 2 and full quantitative data are shown in Table 3.

Table 2. Qualitative themes and subthemes.

1. Airport security and staff interactions can help or hinder positive air travel experiences
1.1 TSA security agents set the tone for airport experiences
Participant recommendations: Train TSA security agents on how to interact with persons living with dementia
Participant recommendations: Recognize unique identifiers that signal need for assistance
1.2 Separation of travel companions due to TSA agents was common and anxiety-provoking
Participant recommendations: Specialized training and retraining to follow TSA guidelines
1.3 The TSA PreCheck® line offered a less stressful security screening experience
Participant recommendation: Have a separate line for persons with disabilities or automatic TSA PreCheck®
1.4 Existence of TSA Cares services is largely unknown
2. Problems with Airport Navigation
2.1 Loudspeaker announcements were sources of frustration
Participant recommendation: Provide announcements in text form
2.2 Airport signage can be inconsistent and difficult to follow
Participant recommendations: Have online access to user-friendly maps and services
2.3 Long distances in the airport and mobility issues compound to make navigation difficult
Participant recommendations: Encourage and provide expanded wheelchair or electric cart services
3. Unaccommodating physical spaces
3.1 Easily accessed quiet spaces are desired to avoid loud and overstimulating airport spaces
Participant recommendations: Advertise and provide accessible quiet spaces
3.2 Travel companions found the lack of family restrooms burdensome
Participant recommendations: Have more family restrooms closer to other airport amenities

Table 3. Percent participants indicating service use and navigation difficulties.

	Travel companions	Persons living with dementia
Used TSA Cares services on last Flight
None	52.9%	38.2%
TSA PreCheck	32.1%	38.2%
TSA passenger support service	8.6%	8.8%
TSA supervisor assistance	5.0%	8.8%
TSA notification card	1.4%	5.9%
Trouble with Airport Navigation
Understanding announcements or signs	24.9%	28.6%
No difficulties	23.1%	20.4%
Following signs in the terminal	19.0%	22.4%
Getting access to airport services	9.0%	12.2%
Getting clear directions from information kiosks	9.0%	6.1%
Getting help from people at information desks	7.7%	4.1%
Other	5.4%	6.1%
Getting access to translation services	1.8%	0.0%
Mobility Issues at the Airport
No difficulties	36.8%	30.8%
Walking through the terminal	22.8%	23.1%
Using the moving walkways	15.2%	20.5%
Using the stairs, escalators, or elevators	15.2%	15.4%
Using the airport tram	6.4%	10.3%
Other	3.5%	0.0%
Difficulty Locating Various Airport Spaces
No difficulties	37.6%	24.4%
Airport-designated quiet space	23.6%	34.1%
Comfortable places to sit and rest	18.2%	22.0%
Accessible restrooms	16.4%	9.8%
A place to eat	3.0%	7.3%
Service animal relief areas	0.6%	2.4%
Other	0.6%	0.0%

Note: Participants could select multiple answers.

3.1. Airport security and staff interactions can help or hinder positive air travel experiences

3.1.1. Transportation security administration (TSA) agents set the tone for airport experiences

Participants described a spectrum of experiences that illustrated how the behavior and attitudes of TSA security personnel make a meaningful difference in stress levels at the security checkpoint. Several participants shared notably unpleasant interactions with TSA agents. Sandra (54 y, C) suggested that they should receive ‘TRAINING, consequences for abusive treatment of passengers. Stop yelling at people instructions, allow the companion to explain’ (emphasis hers), while Deborah (57 y, C) said there should be ‘agents who are patient and kind. No yelling.’ Tammy (61 y, P) asked for ‘less shouting and polite people.’ In contrast, some participants had memorable, positive experiences with TSA agents. ‘They were patient as they had to tell him not to take everything out of pockets, but point and say that pocket, now that pocket, now that pocket etc.’ shared Pamela (72 y, C). Lori (72 y, C) recalled that they were ‘totally accommodating and helpful to us.’

3.1.1.1. Participant recommendations: train TSA security agents on how to interact with persons living with dementia.

Participants wrote that having TSA agents who could better recognize and respond to persons living with dementia would be helpful, as Laura (66 y, C) explained: ‘Added training for TSA Agents on dementia related behavior and interactions to help with future guidance for [travelers with dementia].’ Elizabeth (72 y, C) identified specific issues of concern for TSA agents to be aware of: ‘Training for airline staff to understand situations that may occur - the [person living with dementia] not processing directions, startled when touched, need for physical assistance from companion.’ In general, ‘The security team should have some training in how to talk the person through each step slowly and one step at a time. Rushing the person only adds more stress and anxiety’ (Julie, 64 y, C).

3.1.1.2. Participant recommendations: recognize unique identifiers that signal need for assistance.

Participants suggested implementing institutional use and training on a unique, but discreet identifier that could alert airport staff to a person’s hidden disability. Kimberly (51 y, C) explained, ‘If my Mom had a badge so they could identify her and not ask her questions that would help. She got agitated when they spoke to her.’ Another travel companion noted that an identifier should operate in tandem with additional training on how to respond to persons living with dementia:

I do think that everyone with dementia should have a lanyard or other identifying [symbol] that helps not only airport staff but other people in the airport to recognize someone that has dementia - e.g., shopkeepers, waiting staff etc. This will assist everyone especially if everyone has had appropriate training in what dementia means and how, within their roles, they can assist someone travelling with dementia. (Patricia, 66y)

Linda (62 y, C) noted that it could help avoid the need to look like someone who needs help: ‘It seems like if you’re not old or physically unable to walk they are less likely to assist you. Maybe a badge of a certain color could be issued ahead of time when printing out tickets or reserving travel.’ If not a badge, Donna (57 y, C) explained how boarding passes could similarly facilitate interactions:

Maybe add something to boarding passes so they know there is a caretaker and a dementia patient. Like precheck does so it’s quick to see, no long explanation holding up the line and parties can remain together without a fuss.

3.1.2. Separation of travel companions due to TSA agents was common and anxiety-provoking

More than a third of travel companions (31.1%) and persons living with dementia (43.2%) reported getting separated at the airport from their travel companion. Qualitative data suggest this separation tended to happen at security. Of note, governmental guidance says that TSA agents can provide extra assistance and not separate travel companions for screening when informed of passengers’ disabilities like dementia (Transportation Security Administration 2021). However, after informing TSA agents of their situation, participants reported being ignored, separated from their companion, and given no accommodations. Brenda (64 y, C) had this experience repeatedly:

As always happens we are separated so that I can be patted down because of my artificial joints. I did make it quite clear to the agents that my husband has dementia. He did not get any special assistance by TSA as usual.

Moreover, some participants were explicitly told that they could not remain together by TSA agents. Mark (61 y, P) said, ‘They don’t want you [to] need another person during the security process. They say this is the rule.’ Jennifer (68 y, C) described:

I was pulled out for special screening. I told them my husband needed to come with me because he had Alzheimer’s and would wander. They did not let him come with me. I was a nervous wreck trying to watch him from a distance.

3.1.2.1. Participant recommendations: specialized training and retraining to follow TSA guidelines.

In addition to TSA training on interacting with persons living with dementia, participants suggested that TSA agents should be trained or retrained to follow their guidelines. Nancy (85 y, C) suggested:

Security should be better trained to not interrogate dementia individuals and let the caregiver stay with. I was told to do that by someone but seemed not allowed. This was a stressful time for us anyway with our daughter on hospice and they just added to the stress of the caregiver.

Guidelines also say that passengers may provide a TSA notification card to inform the screening staff of their status. However, experience of the participants suggest that this extra documentation does not assure extra assistance or compliance with TSA guidelines:

Half of people look at me like I am crazy when I hand over the [laminated] card that says I am traveling with a person with dementia/Alzheimer’s. TSA staff does not even understand WHY they are being shown the card. (Sandra, 54y, C)

It needs to be ensured that TSA agents understand the documentation and guidelines in place for populations with hidden disabilities.

3.1.3. The TSA PreCheck® line offered a less stressful security screening experience

About one-third of travel companions (32.1%) and almost 40% of persons living with dementia (38.2%) reported using TSA PreCheck®. Participants who used TSA PreCheck® tended to report having more pleasant security experiences than those who did not and encountered fewer procedures that could overwhelm a person with cognitive impairment (e.g. taking off shoes). Barbara (65 y, P) explained: ‘Having TSA Precheck makes it easier to go through security.’ TSA PreCheck® areas were described as less busy and less overstimulating for persons living with dementia. Participants also more often described TSA PreCheck® agents as patient and ready to provide additional assistance: ‘Short wait lines in Precheck…TSA agents were very understanding and HELPFUL with letting ME help my loved one through the process with little disruption’ (Laura, 66 y, T, emphasis hers). Implying that his security checkpoint experiences before TSA PreCheck® had been problematic, Richard (73 y, C) wrote: ‘Once we both qualified for precheck it wasn’t much of a problem once I told the agent about her dementia.’

3.1.3.1. Participant recommendation: have a separate line for persons with disabilities or automatic TSA precheck®.

Automatically providing free TSA PreCheck® or having a designated line for those identifying as having disabilities, whether they are hidden or visible, would reduce air travel stress. Michael (54 y, P) recommended this because the regular security screening is too complex: ‘TSA precheck for all those with dementia diagnosis and their travel companions. The process of taking out items, remembering to collect everything is very challenging.’ Angela (66 y, P) suggested a separate line for extra assistance and to not cause annoyance:

A separate line for the disabled, with additional personnel to help those with special needs (sic), would be very helpful. Or, priority screening for the disabled (all disabilities). The biggest trouble with screening is the time it takes, the lines and the frustration of fellow passengers, as that is contagious. I do think, though, that letting the airline and the TSA know of a disability helps tremendously. At least here at [our local airport], they try to help when they know help is needed.

3.1.4. Existence of TSA cares services is largely unknown

TSA Cares is a program from the Transportation Security Administration providing services to support persons with disabilities, medical conditions, or other extenuating circumstances through TSA security screening. Services include TSA PreCheck®, supervisor assistance, and offering a standard notification card travelers can give to TSA agents. Participants were most often informed about TSA PreCheck® when booking their flight and it was the most used TSA Cares Service on their last flight (travel companion = 32.1%, persons living with dementia = 38.2%). However, just over half of the travel companions and more than a third of persons living with dementia did not use any TSA Cares services, with nearly all explaining they had not been aware that such services existed. Michelle (55 y, C) said, ‘I didn’t know these services were available, I thought that disability help was mainly for those who use wheelchairs.’ Cynthia (64 y, P) lamented not being able to use TSA PreCheck®:

I didn’t know what was available and my daughter went with me as a non-ticketed passenger, so I just followed her directions as she followed TSA directions. It was confusing and anxiety-provoking. I wish I could have been able to use a separate security screening line that was shorter and with less pressure to hurry.

A minority of travel companions explained they had not used any services because they felt they did not need them.

3.2. Problems with airport navigation

3.2.1. Loudspeaker Announcements were sources of frustration

Participants worried they might miss gate changes and other important information due to trouble understanding spoken and loudspeaker announcements (travel companion = 24.9%, persons living with dementia = 28.6%). Both travel companions and persons living with dementia expressed giving up on being able to understand them, saying, ‘hearing announcements and last [minute gate] changes are impossible’ (Sharon, 57 y, C) and ‘there was no way to figure out what was actually said’ (Barbara, 65 y, P). Teresa (59 y, C) explained how loudspeaker announcements frustrates her companion with dementia, he ‘doesn’t understand the overhead announcements all that well and fears his name is being called.’

3.2.1.1. Participant recommendation: provide announcements in text form.

Text-based announcements allow more time to understand the message and could help avoid potential issues with verbal announcements. As Mark (61 y, P) noted: ‘I can never understand the overhead announcements and I can’t process - Accents, sometimes they speak too soft or equipment isn’t working properly. Info desk is helpful but would be nice if they wrote it down.’ Christine (68 y, P) also requested text-based announcements saying, ‘Perhaps a sign to make announcements to be read as well as a live announcement.’

3.2.2. Airport signage can be inconsistent and difficult to follow

Difficulties understanding and following signage (travel companion = 19.0%, persons living with dementia = 22.4%) was the second biggest issue reported by participants. Inconsistent signage made navigating the airport difficult. As Cheryl (69 y, P) explained, ‘when we walked past the concourse and turned to go back to it, there was NO SIGNAGE from that side’ (emphasis hers). Uninterpretable or lack of signage at the airport made independent navigation for persons living with dementia difficult or impossible. Cynthia (64 y, P) follows her daughter, admitting she cannot navigate alone: ‘I can’t get to the baggage area by myself….too much to remember and the signs are too hard to figure out.’ Denise (65 y, C) wrote, ‘I take all responsibility for getting [the person with dementia] places. I read all signs and listen for announcements and watch that he sticks by me.’

3.2.2.1. Participant recommendations: Have online access to user-friendly maps and services.

Regular Air Travelers Had An Easier Time Navigating Airport Spaces. As Kelly (52 y, C) wrote, ‘I travel frequently enough that I do not have issues with figuring out how to manage all aspects of air travel and airports.’ Easy to find and use materials online could orient less frequent travelers to airport spaces ahead of time. This helps Julie (64 y, C) prepare for navigating lesser-known airports:

No problem at [our local airport] as we are familiar with the airport. Other airports we need to allow extra time to get from place to place….I try to research what I can online prior to leaving home. Easy access online websites would be nice to find maps of the inside of the airport and services available.

3.2.3. Long distances in the airport and mobility issues compound to make navigation difficult

About two-thirds of the travel companions’ care recipients and persons self-identifying as living with dementia had some difficulty physically navigating the airport. The size of the airport itself was a challenge for many travel companions and their care recipients. Jeffrey (73 y, C) put it simply that ‘great distances are a problem.’ John (52 y, P) said traveling through the airport was ‘a lot of walking and very disorienting.’ Mechanical solutions, such as moving walkways and escalators, can be difficult for persons living with dementia. As Sandra (54 y, C) explained, the ‘movement of walkways and escalators was scary to mom.’ Use of automatic and continuously moving airport transport systems is even more challenging for persons living with dementia who also have physical impairments, as Robin (58 y, C) noted, her companion with dementia:

…walks very slowly and has difficulty seeing. She has difficulty navigating moving walkways, so we don’t use them. We use elevators instead of escalators. We didn’t use the tram, but she would struggle with that as she would need help getting on it and then find a place to sit (would be too unsteady to stand).

3.2.3.1. Participant recommendations: encourage and provide expanded wheelchair or electric cart services.

Escorted transportation services can help travelers cope with long distances and avoid the unsteadiness or fear some persons living with dementia may encounter with automated mechanics. Diane (61 y, C) noted, ‘wheelchair needed. Does not use one outside of airport.’ Some described having to wait a long time for a person to retrieve them with a wheelchair or cart, which often resulted in being rushed to their gate and causing other problems. Kathleen (71 y, C) explained how she has had to ‘wait for wheelchair assistants too long and have had assistants that run ahead or go too fast to keep up with.’ Expanded transit services and treating individuals and their companions with dignity could have helped avoid John’s (53 y, P) harrowing experience:

At [another airport] I used wheelchair assistance on the return. It was chaotic. The line to get such assistance was longer than the line to check in…Also, once I received a wheelchair, I was taken to a holding pen. A lot like a cattle pen with maybe 30 or 40 wheelchairs crammed together and waiting to go to their gates. There I waited for about 2 hours. No water. No food (although we watched the workers eat snacks constantly). No bathrooms. They got me to my gate 10 minutes after boarding had begun. And were racing to get me there. I was sick with stress from this experience.

3.3. Unaccommodating physical spaces

3.3.1. Easily accessed quiet spaces are desired to avoid loud and overstimulating airport spaces

Participants had the difficulty locating quiet spaces at the airport (travel companions = 23.36%, persons living with dementia = 34.1%). There was a strong desire for more places to simply get away from airport noise and stimuli in general. John (53 y, P) noted they ‘were not made aware of quiet areas or else we might have used them if they were easily accessible.’ As Andrew (49 y, P) described, ‘there are no quiet enclosed areas in the lobby to wait. It is all exposed and noisy.’ Sandra (54 y, C) reported she resorts to taking refuge in the restroom:

There need to be QUIET areas where I can go with my mom. Sometimes I just go to the bathrooms and stay there a long time talking, fixing her makeup, redoing her hair, etc. 20 people in the bathroom is better than 200 at the gate. (emphasis hers)

Others noted that quiet spaces might help counteract dementia-related behaviors that come with increased agitation from stimuli (e.g. wandering).

3.3.1.1. Participant recommendations: advertise and provide accessible quiet spaces.

Quiet spaces to separate oneself or care recipient from airport noise and stimuli were suggested by an overwhelming majority of participants. Specifically designated quiet spaces or rooms for travelers seeking a break from airport crowds or other stimulation are becoming more prevalent at airports around the world. However, many participants were unaware that such designated spaces existed or had difficulty locating them. Randy (67 y, P) indicated, ‘the airlines need to advertise the fact that there is such a thing as a quiet room available. I never heard of such a thing.’ Kim (67 y, C) reported a lack of communication on several fronts, saying ‘I did not know there were quiet places in the airport, I did not see any signage for them, the information people did not mention them.’ Mark (61 y, P) has had repeated difficulty using designated quiet rooms: ‘I can never find this. Sometimes they are so far away when we do find. Sometimes there isn’t time to get [to it]. Quiet space is very important when traveling.’ Multiple, easily located quiet spaces would reduce airport stress. To equitably accommodate for persons living with dementia and their travel companions, formal quiet spaces ‘also need to be free of charge. No need to pay a fee and no need to buy something’ (Angela, 66 y, P).

3.3.2. Travel companions found the lack of family restrooms burdensome

Problems with family bathrooms were the most frequently discussed topic by travel companions when describing overall comfort and accessibility issues. Potentially owing to the advanced age and related status of their care recipients, more travel companions reported having difficulty locating family restrooms than persons self-identifying as living with dementia (travel companions = 16.4%, persons living with dementia = 9.8%). If family restrooms were found, participants often reported they were not near the other facilities, making them more difficult to find and, perhaps, not on the radar of cleaning staff. As Elizabeth (72 y, C) said, there were ‘few family restrooms available; several seemed to be located far away. Some not well cared for or monitored.’ Without family restrooms, travel companions worried about getting separated from opposite-sex care recipients: ‘There is always a need for more family style bathrooms. I’m concerned he could wander off while I’m in the restroom.’ Rhonda (64 y, C) A few travel companions reported accompanying persons living with dementia into the opposite-sex washroom. However, most sent their care recipient to use the washroom alone, relying on strangers if help was needed:

I can’t remember ever seeing a family restroom where I could accompany him. Since we are of different sexes, I just had to wait outside the men’s room and hope that he was able to talk care of himself or some other man might assist him if necessary. (Stephanie, 65y, C)

3.3.2.1. Participant recommendations: offer more family restrooms closer to other airport amenities.

Travel companions said they need more, easily located family facilities to help care for persons living with dementia. Kim (67 y, C) wrote: ‘They need more family bathrooms!!!! That was our biggest problem, I had to go into the men’s room a number of times to help my husband.’ More family restrooms would help negate the unease felt by Peter (66 y, C): ‘I did worry about my wife using the bathrooms alone. Turns out she did okay, but there needs to be more “family” bathrooms available.’ More family restrooms closer to standard restrooms could alleviate stress of being separated or relying on strangers to help manage the toileting needs of persons living with dementia at the airport.

4. Discussion

Persons living with dementia and their travel companions indicated a continued need and desire for air travel. In this study, they described experiencing a great deal of anxiety and frustration at the airport, but also identified multiple ways in which airport systems could better support travelers like themselves. Placing persons with dementia at the center of their own advocacy enables positive identity and dementia activism (Shakespeare 2016). They and their travel companions identified how airport staff, navigational assistance, and the physical environment can facilitate or impede comfortable, independent air travel. Whereas Thomas and Milligan (2018) suggested researchers and activists have been reluctant to categorize persons living dementia as disabled people, in this study persons living with dementia and their travel companions readily noted how their recommendations could benefit persons living with all kinds of disabilities (e.g. separate security line, reduced auditory stimuli).

Participant-identified suggestions for creating less burdensome security procedures align with global guidelines already enforced to ensure equitable and non-discriminatory access to air travel (see regulation from the European Parliament and the Council of the European Union 2006). For example, the UK’s Civil Aviation Authority (CAA) regulations require airport personnel to never separate persons with disabilities from their travel companions, have established specific and repeated staff trainings with input from disability advocacy groups, and have designated assistance security lanes (Civil Aviation Authority 2016). Participants also suggested the use of discreet badges that could alert airport staff and TSA agents to their hidden disability needs. Indeed, the CAA also reports that the optional recognition of discreet identifiers for persons with hidden disabilities has been widely adopted and is popular with security staff (Civil Aviation Authority 2016, 2018). Symbolic badges without wording (e.g. a sunflower on a green background) can alert staff to a hidden disability without naming the disability. Trained persons would know it means there is a potential need for additional assistance while others who are unaware of the program would not identify it, reducing the potential for stigma. Moreover, a badge can aid persons with dementia and others who cannot verbalize their needs, and it can reduce a travel companion’s burden of having to actively ask for help or explain their unseen needs. In these ways, a badge may also preempt stressful situations described by the participants (e.g. being told to separate, asked complex questions) and cue personnel to provide the extra support they desired. It cannot be understated that the use of a badge system must operate in tandem with appropriate training. The Hidden Disabilities Sunflower wearables and companion awareness training has been employed worldwide and is currently deployed at over 30 airports in the U.S. ("The Hidden Disabilities Sunflower" 2021).

Persons living with dementia and their travel companions had generally positive experiences when they used specialized TSA and airport services, aligning with advice offered by medical and professional societies for travelling with cognitive impairment to use such services when available (Sadlon et al. 2021). However, many participants who reported not using the services were unaware such services existed or did not believe the services were for them. Better outreach and active referrals are necessary to connect those in need to these services. Enhanced wheelchair or cart service and courteous personnel to escort families would also reduce navigation-related anxiety caused by signage and having to traverse long distances. U.S. airports could also offer rehearsal trips and other opportunities to familiarize travelers with airport environments and procedures (Civil Aviation Authority 2016).

Training for TSA agents that underscores their own guidelines for recognizing and interacting with persons with disabilities should be implemented immediately. These trainings would ideally facilitate positive security line experiences and transportation escort service focused on treating travelers with dignity and respect (Kennedy and Minkler 1998). Based on the findings of the current study, the Dementia-Friendly Airports Working Group collaborated with the TSA’s Disability Branch of the Office of Civil Rights and Liberties to author Best Practices documents shared through TSA internal communications as part their National Shift Brief (text available from Dementia-Friendly Airports Working Group 2020). Ongoing training and evaluation of TSA agents is necessary to ensure good practices are implemented successfully.

Participants suggested text-based communications could supplement loudspeaker announcements and ameliorate anxiety over missing or not understanding airport announcements. Some airports already have smartphone applications with information about using the airport, but not all these applications allow travelers to link to specific flight information. Upgrades that provide individual flight information would be beneficial. Like other specialized services, airports and airlines can better advertise push notification features. They can also offer registration for text-based messaging upon booking for those without smartphones or a desire to download specific apps. Data from the Pew Research Center (2019) shows that nearly all older adults have a cell phone (whether smart or non-smartphone), so advancing text and app-based solutions for this population is feasible. Given that many individuals beyond those with dementia have difficulty understanding spoken announcements, improved text-based services would likely benefit a significant number of travelers.

Participants suggested more accessible family restrooms and quiet rooms as dementia-friendly changes they would like to see at airports. The difficulty of finding accessible toilets was also identified in other research on dementia-friendliness of airport spaces (O’Reilly et al. 2017) and barriers to travel and recreation (Innes, Page, and Cutler 2016; Mathews, Marshall, and Wilkinson 2021). Long-term design changes that reduce perceptual and auditory complexity (Orfield 2013, 2015) could improve navigation and reduce the need for quiet rooms altogether. By making navigation more intuitive and reducing overstimulation, persons living with dementia can better access ordinary spaces without undue burden (Bartlett 2021). Other design principles shown to improve dementia-friendliness of spaces include familiarity, legibility, distinctiveness, accessibility, comfort and safety (Mitchell and Burton 2010). The recently developed Dementia Friendly Community – Environmental Assessment Tool (DFC-EAT) can guide researchers and lay-person audits of public spaces (Fleming et al. 2017) and spur further considerations for future redesign of particular indoor environments. Design focused on making navigation easier for persons living with dementia would also be beneficial for all older adults and individuals with other disabilities (National Academies of Sciences 2014).

In the global north, Canada and the European Union have unified legislation that regulates airport and air carriers together (European Parliament and the Council of the European Union 2006; Minister of Justice 2019), while in U.S. they are under different regulations which may lead to a disjointed approach to air travel rights and responsibilities for persons living with disabilities (Code of Federal Regulations 2008, 1979). Whereas the European Union promotes the right to ‘mobility opportunities for air travel comparable to those of other citizens’ for disabled persons and persons with reduced mobility through ‘free movement, freedom of choice and non-discrimination,’ U.S. law language focuses on non-discrimination, physical accessibility, and accommodating mobility aids. The unified and person-centered European Union air travel legislation may benefit persons living with dementia and other disabilities in ways not experienced at American airports. Efforts in this area may already be in progress given the recent creation of the Air Carriers Access Act Advisory Committee (ACAA Advisory Committee). This committee’s purpose is to advise the Secretary of Transportation on issues related to the needs of passengers with disabilities in air travel (Department of Transportation 2021). Of note, the ACAA Advisory Committee was formed after the conduct of the current study. Regardless, comparative analyses of the air travel experiences of persons living with dementia and their travel companions in Europe may provide evidence of the relative effectiveness of the U.S. regulatory approach.

4.1. Limitations and strengths

Measures of some participant demographics (e.g. racial identity) or cognitive/physical characteristics (e.g. dementia severity) were not included that could help identify further nuanced themes of diverse air travel experiences. We did not use a sampling frame for this exploratory study. As such, we may have only heard from individuals who were potentially driven to recount their very positive or very negative experiences or who, in other ways, do not adequately represent the population and its experiences. A significant strength of the study was the inclusion of the voices of persons living with dementia and their travel companions (Charlton 2000). Moreover, participants shared their recommendations and specific desires for improvement in their own words. The inclusion of open-ended questions provided the opportunity for participants to share information that we may not have asked about explicitly or that they were unable to fully convey in response to close-ended questions. This approach enriched our data and deepened understanding of challenges to air travel mobility among persons living with dementia and their travel companions.

5. Conclusion

This work informs continued development of theory linking dementia, disability, and equitable access to public spaces. U.S. airports are currently designed and operated less than optimally for individuals living with dementia and their travel companions. Individuals need to travel for a variety of reasons, not just for leisure, and many obstacles hinder their ability to do so. A dementia-friendly airport requires better staff assistance, improved wayfinding, and accessible quiet spaces and family restrooms. Efforts to implement unified dementia-friendly air travel infrastructure and regulation in the U.S. remain critical to advancing the well-being of individuals with dementia and their travel companions. Continued research is necessary to identify how lived experiences of airport spaces are influenced by layering of dementia type or stage and other diverse lived experiences. Future research should also evaluate airport efforts to improve security procedures, navigation, and facilities, and empower persons living with dementia and their care partners through active collaboration.

Acknowledgements

This research was presented in part at the annual Gerontological Society of America conference in 2020. The presentation and this research were funded by the Robert L. Kane Endowed Chair in Long-Term Care Fund (internal University of Minnesota funding). Many thanks for the members of the Dementia-Friendly Airports Working Group (DFAWG), an international collaboration of professionals, academics, and volunteers in aging and dementia services and support systems, including present and former dementia care partners, and individuals who are living with dementia. DFAWG members informed the development, assisted in recruitment, and member-checked findings. We are thankful to the study participants, who took time to share their experiences with us.

Disclosure statement

No potential conflict of interest was reported by the authors.