"Dementia- or disability-friendly travel - theory and reality" - Lieselotte Klotz, member of the European Working Group of People with Dementia, gives her insights into air travel with dementia


Like many people, I was thrilled to be able to get back on a plane at the end of the 2021 pandemic. Finally hugging distant family members, friends and acquaintances abroad or attending events of the Alzheimer's societies in other European countries. On my last flight. before the pandemic, I was still able to book my flights and board without major restrictions.
But in autumn 2021, many things were suddenly completely different. As a person with early dementia, intensive preparation was required. My internet search was successful.
Very important was the information for disabled and mobility-impaired passengers. With effect from July 26, 2008, this EU Regulation (EC) No. 1107/2006 of the European Parliament and Council of July 5, 2006 applies. This defines and strengthens the rights of disabled people and passengers with reduced mobility (PRM – Persons with Reduced Mobility). This includes also people with dementia, like me.
In addition, airlines in the European Union must offer free assistance to people with disabilities. This applies to all areas at the airport, both at the departure, destination and intermediate airport. And that also applies on the plane. For example, there must be employees who help with boarding and alighting, transporting luggage or going to the toilet. The airlines have to carry medical equipment and two aids free of charge, for example a wheelchair or a walker, as in my case.
So I booked my flights with a good and safe feeling. Unfortunately, the theory and the practice and reality I experienced myself were very different. The well-known post-pandemic [travel] chaos with delays, breakdowns, lost and damaged luggage etc. is bad enough for people who can adapt quickly, but for a person with dementia like me, it has often been catastrophic.
In my world of a traveller with dementia, my personal experiences are as follows: First, the flight to Portugal in autumn 2021 with a stopover in Frankfurt/Main. The flight from Berlin lands in Frankfurt with a significant delay. The booked connecting flight to Portugal was already in the air. For the necessary hotel accommodation for one night, no disabled services could be realised. Even on the onward flight the next day, the necessary service was only possible for me with the support of my travel agent and my daughter. Last but not least, my walker was scratched and dented on the return flight.
On a return flight from Bucharest via Frankfurt/Main to Berlin in autumn 2022, the wheelchair service “forgot” me at a gate at Frankfurt Airport. Here, too, telephone help and support from my travel agency was required. When I complained, the person in charge said to me: "Why are you still flying in such a bad condition, that's irresponsible". I was shocked! So now I've been blamed for the system failure at the airport. At least I was able to catch the connecting flight to Berlin. But the chaos that day did not want to end. When I arrived in Berlin, my suitcase and walker hadn't arrived as promised. I had to spend more than six hours alone at Berlin Airport because without a walker I wasn't mobile enough to continue my journey by train. No one from Disability Services gave me any information or offered help. With a delayed flight from Frankfurt, I was finally able to pick up my suitcase and walker around midnight, but had to put up with another night in Berlin without the possibility of continuing my journey. The airline was just as uninterested in the additional costs for the taxi to my accommodation, the new train ticket and the overnight stay as was my mental and physical condition after this immense stress. My written complaints and the complaints from my travel agent have been ignored to this day without comment.
In 2021/2022 I was on an airplane 10 times as a passenger and a person with dementia. Unfortunately, the airline was only on time twice, there was no lost, misdirected luggage, no problems transporting my walker, no "errors" in the services for people with disabilities, no unfriendly, misinformed or unmotivated service staff. The outdated system of booking aids did not always make it easy for me, a customer with disabilities, but also for the staff of travel agencies and airlines. The usual four-digit code does not come close to reflecting a mobility restriction such as Lewy Body dementia. The system as it is designed today can only distinguish, for example, whether I can climb stairs or not.
The fact that there are so-called abbreviations for the degree of mobility, such as "WCHC = passenger cannot walk independently and cannot climb stairs" and "DPNA = passenger with a mental disability or learning disability", and what relevance these have, I personally only realised after many emotionally and physically demanding experiences at the various airports in Europe. These abbreviations are generally known, internationally. But many people in travel agencies, at airports or in the corresponding service areas at the airport are not at all aware of the direct effects on people with dementia.
The pandemic has presented management issues with unforeseen and new challenges and has put all employees in the aviation industry - as in other industries - under great pressure, worldwide. I was able to observe this myself in 2021/2022 at airports throughout Europe. But there is not only a lack of motivated workers, but also a massive lack of financial resources for fair salaries, corporate culture, knowledge and training.
According to the WHO, 15 percent of all people have a disability. This means that one in seven people worldwide is affected by a disability and there are many passengers like me who need special assistance to be able to travel by plane. When a system is already under stress, the results can be devastating, distressing, and annoying for those affected. Sometimes it took me hours and even days to come to terms with such negative experiences.
And yet I will not give up, I will continue to travel by plane. Because there were always people who gave me back my belief in the feasibility with a smile, a friendly word or direct help. At this point I would like to thank these people and ask the others: Take a look and help, you too could need support at some point.