dementia Can people with dementia travel successfully by air? 9 suggestions to guide and assist a dementia sufferer traveling by plane: 1. Get to the airport well in advance of your flight time; 2. Notify airport staff that you are travelling with a person with dementia; and learn more. December 15, 2015 Written By: Maria O'Reilly, Ph.D. Nicole Sheperd Published On December 15, 2015 How To Navigate Check-in, Security, Boarding, And Flying and Avoid Travel NightmareA diagnosis of dementia is devastating for the person receiving the diagnosis and his/her family. It marks major life changes and the need to modify future plans. However, it does not mean that all activity should cease or that the person with dementia should withdraw from daily life. Please Read This: Understanding Frontotemporal Dementia There are an increasing number of people with dementia speaking out about the need to shift the focus from dementia as a disease to how people can live well with dementia. Alzheimer's Disease International and its partner organizations in numerous countries released their Dementia Friendly Communities statement earlier this year1, which advocates promotion of social inclusion and engagement of people living with dementia, as well as the elimination of stigma. People living with dementia and their carers should therefore have access to the full range of activities available to all members of society to maintain optimal quality of life. This includes air travel.There are currently 47.5 million people living with dementia worldwide2, with this figure expected to rise to 135.5 million by 20503; a consequence of global aging and the transition of the Baby Boomer generation into old age. As air travel decreases in price and becomes more accessible, more older people are traveling by air than ever before. It is likely that a proportion of these have dementia; however, very little is known about the travel habits and experiences of people with dementia, although from time to time media reports draw attention to the more unfortunate outcomes, such as this this story or this one. To properly address an issue and prevent such distressing outcomes, you need to know more about it, which is why our team surveyed travelers with dementia and their companions, as well as flight crew and security staff as part of our research project "Infrequent Flyers? Exploring the issue of air travel and dementia." You Might Like This: Early-Onset Dementia What we foundWho participated?Surveys were completed by 41 traveling companions, 8 people with dementia, 21 flight crew and 13 security staff. Ten companions also participated in follow-up interviews. They all lived in various locations around Australia.Travel habits of people with dementia In the course of conducting this research, a number of people have remarked "People with dementia don't travel by air do they?" However, the results of this small scale investigation of the topic reveal that people with dementia do travel relatively frequently, and sometimes do so alone. Air travel is reasonably accessible and as people age, they choose to travel for leisure or to attend special family events. Australia, like the USA, is a nation of migrants, thus people may wish to travel to visit their homelands. Out of the 10 interviews conducted, four described trips involving travel to the land of the person with dementia's birth.Both companions and people with dementia reported taking an average two trips per year and both groups reported that the person with dementia sometimes travelled alone. Some of the companions we spoke to had plans to do more traveling in the future, including long haul flights.Experiences at the airportGetting from the airport entrance to the plane presents numerous obstacles for any traveller, and participants in our study confirmed a number of problems encountered at the airport: at least half (50-60%) had experienced problems with checking in, bag screening, finding the boarding gate, finding restrooms, hearing announcements, and reading information on signboards.Indeed, the in-depth interviews with companions suggested that navigating the airport was the most difficult part of air travel. In particular, the security check point was difficult for people with cognitive impairments to negotiate smoothly. Some people with dementia have trouble following directions and may become confused when something they don't expect occurs. People with dementia may not be able to answer questions in a convincing way; for example, they may not have packed their own bag, or they may have forgotten their travel destination. Some older people have metal body parts, which sets off the scanners and can mean travelers are separated for more intensive screening and questioning. The quote below illustrates these issues."… putting things on to the conveyer belt is normally OK, but going through the archway and responding to any instructions from staff who attend those security check-points is where the first problem occurs, and that might be that, for example, if she has to remove a belt or her shoes or a piece of jewelry that we'd not anticipated would trigger off the alarm… she can take these things off, but then when an instruction is issued for her to put them back on the conveyer belt into a tray and if I've sailed through under the arch I'm not allowed back in to help her. And in fact I've sometimes been resisted because that's a breach of the security arrangements …"Other problems noted at airports included finding suitable restrooms (unisex were often needed and not always available) and ensuring the person with dementia did not become lost. Navigating unfamiliar airports, particularly during long haul travel was reported to be very stressful by both travelers with dementia and their companions.Experiences once on boardMost people reported that cabin crew offered outstanding service and were sensitive to their needs. The most difficult thing once on board was that the restrooms were not able to accommodate two people, which made it difficult for the companion to assist. One third of companions said the person with dementia experienced anxiety during the flight. They had a range of strategies they used, such as bringing along high quality noise canceling headphones and distracting them with conversation or their favorite snacks. Overall, people were positive about their experiences on board.Flight crew and security staff experiencesInterestingly flight crew reported experiencing passengers with possible dementia once or twice a year, while security staff reported experiencing confused travelers weekly or even daily, with just over 30% of security staff having encountered passengers declaring they had dementia compared with just under 20% of flight crew. Security staff noted that passengers with dementia found following instructions and understanding the processes going through security the most challenging and that they often became anxious as a result. Flight crew also noted some anxiety while on board and emphasized that there is much they are able to do to assist (short of toileting and feeding) if they are informed of the passenger's needs. Some flight crew reported incidents of extreme anxiety and even the need for restraint mid-flight, suggesting that such situations could have been prevented if the crew was more aware of the passenger's needs.The results of both the travelers' surveys and the staff surveys suggest that air travel for someone with dementia, particularly in the earlier stages, can be successful if the travelers come prepared. Below are some tips gathered from our participants to make air travel easier for people with dementia and their traveling companions:9 Tips for traveling by air with a person with dementia1. Get to the airport well in advance of your flight time.This allows you to complete all the pre-boarding steps in plenty of time and then relax in a quiet place, such as a coffee lounge. However, do not arrive so early that the person with dementia runs the risk of becoming anxious or disoriented. One suggestion from a companion was to arrive 1 to 2 hours early for a domestic flight, and 3 to 4 hours early for an international flight. If you are able to, visit the airport before the day of your flight and familiarize yourself with where you will need to go on your way to the gate2. Notify airport staff that you are traveling with a person with dementia.They may be able to assist you getting through the security checkpoints or provide a wheelchair if needed. Sometimes a wheelchair can be helpful even if the person with dementia is able to walk as it identifies the traveler as someone in need of assistance. However, this strategy is only useful if the person with dementia accepts use of a wheelchair. If you notify the airline, you can board the airplane first along with other people with special needs. Most airports have teams of volunteers to help passengers find their way around. If you notify them in advance, they should be able to assist you when you arrive. Check the airport's website for details.3. Minimize hand luggageYou may need to keep "in touch", literally, with the person with dementia. It makes it so much easier if you have fewer bags to manage.4. For long haul travel, try to travel with two companionsLong haul flights are challenging for everyone, and it will be difficult to look after your own needs (e.g. going to the toilet, sleeping) as well as those of the person with dementia. This is even more important if they are prone to wandering away. The way one companion approached this was to assign one person to take care of the tickets and luggage, and the other person to sit with the person with dementia, explain what was happening and keep them calm.5. Go through security check points behind your companion.If your companion has any problems, such as setting off the security alarm, or being taken aside for explosive testing, you may still be able to assist them if you haven't yet proceeded through that checkpoint. However once you are in front of them, you are not permitted to return to help.6. Make use of quiet spaces within the airport.Do your homework before you leave and look up the facilities at the airport you will be traveling to. Often airports have prayer rooms or other quiet spaces you can access. This may assist you if your companion becomes stressed and anxious in the busy environment of the airport or if they need some time-out between flights.7. Use noise canceling headphones on the flightOnce on board, the person with dementia can use these to tune out the extra noise and distractions that may cause them to become agitated. If you can, bring a device loaded with favorite music.8. Bring favorite snacksThis might provide a pleasant diversion, particularly if the person with dementia is prone to agitation.9. Inform relevant staff that you are traveling with a person with dementia.This was emphasized by the travelers we surveyed as well as the flight and security staff. It will ensure that appropriate assistance can be provided, and is particularly important on long-haul flights when you will need to sleep. Your companion may need assistance getting to the toilet or with meals; flight crew can assist with getting to the toilet and opening food packets, but they cannot assist with actual toileting or feeding. Some people with dementia get confused about how to unlock the restroom doors. You might like to ask the crew how to open the toilet door from the outside; this can avoid the embarrassment of having to call for assistance. Make a point of showing the person with dementia how to operate the lock before they close the door to minimize the chances of difficulty.Suggestions to airlines and airportsOne difficulty experienced by people with dementia is that theirs is often an invisible disability. People with obvious physical impairment can be seen as legitimately requiring help, and this help may be offered without being asked for. When confused or anxious, people with dementia may be perceived as being rude, difficult or aggressive. Instead of being offered help, they may in fact trigger a more aggressive response from airport or flight staff. The companions we spoke to described quite different experiences depending on the type of dementia affecting their loved one. Some people with dementia were aggressive and rude towards their companion, ground and airline staff and would wander off in airports. Other companions reported that the person they travelled with was fairly placid and happy to sit for long periods. However, it should always be remembered that even those who manage quite well in daily life can experience issues when placed in the unfamiliar environment of an airport or airplane. Therefore it is beneficial if all parties to be prepared.Companions felt that if they were traveling with someone who had an obvious physical disability, such as blindness or mobility impairment, that they may be offered more help. It would be obvious to staff that they needed to stay together and may need to be offered other assistance.Companions' suggestions were around ways to tackle this invisibility. One suggestion was that people with dementia could wear some kind of identifier, such as a badge, or a colored tag on a lanyard which would identify them as needing assistance, for example, when going through security checkpoints. Another suggestion was a card carried by either person with dementia or companion that identifies the person with dementia as someone in need of assistance. This is a more discreet means of disclosure, with control resting with the travelers."If you could just perhaps be given something that identifies that you should be staying together, that you need to stay together, or something like that, you know, just a card" (Companion #4)"… yeah, yeah, that's a good idea, really, so 'we're together', so that in itself is a flag saying 'these two are together for a reason, not just because they want to be together because they love each other, because they're looking after each other or whatever, there's a special need here' …" (Companion #5)Companions wondered if there could be some way of indicating the person had dementia when booking the ticket. They said that you could request particular meals if you had special dietary requirements, or if you were vegetarian, and perhaps in a similar manner there could be some way to indicate that you had dementia or were traveling with someone who did and may need extra assistance. This information could be encoded on the boarding pass, for example: "… on your boarding pass, you've got your Frequent Flyer Number, they have all sorts of information … there would be a code on there that, you know, every time you go through something at least they look at it go 'Ah ok', that's why she doesn't understand she needs to go down those stairs or up those stairs." (Companion #9) Both groups of flight crew and security staff surveyed indicated that they would like more training about dementia and how to work best with travelers with dementia. Security staff also pointed out the need for more visual signage explaining the process at security check points, and allocating a special lane for all who need extra assistance, not just those in wheelchairs.ConclusionOur research indicates that people with dementia can and do travel by air, including internationally. When we asked people with dementia and their companions what advice they would give to others who might be planning a trip they said: "Ask for help if you need it" and "Do it and enjoy it!" However, it was also clear from both travelers and staff that open communication is important to avoid misunderstandings. Discuss your needs ahead of time and ask for help when needed. We wish you all the best in your future travels.