Traveling with dementia

[bubblah]

Hi,

After having a relative diagnosed with Alzheimer, I have started to be interested in improving people everyday life. Currently, I am working on re-designing airport for people who have dementia. For that, I would appreciate if you have some stories to share about your experience in airport from the departure to after the landing.

Thank your so much, I really appreciate it

Bee

 

[LadyA]

To be honest, @bubblah I am not sure what you could do with an airport to improve it for someone with dementia. I suppose quiet areas would help. Maybe a system where a person travelling with someone who has dementia could register in advance and then have a separate, quieter security area? Anything to keep the stress levels down, and a person with dementia generally doesn't do well with long delays and queues and standing in lines with lots of strangers.

 

[Amy in the US]

You would have to rebuild the entire airport and remove all the things that are necessary for people who don't have dementia: loud announcements, bright lighting, contrast flooring for different areas of the airport, lines/queues/line-ups, mirrors in the toilets, security screening with lots of oral instructions, hustle and bustle of people coming and going and hurrying, and lots of waiting around.

I would welcome an airport with no waiting so let me know when yours opens!

The only practical things I can think of would be "quiet" rooms in each terminal, where you could get the PWD somewhere less overwhelming, and an attached handicapped accessible toilet that would be private and equipped to deal with an incontinent adult. (Possibly people on the autism spectrum would welcome this also?)

Best wishes to you and your family.

 

[bubblah]

Thank you so much for your answer, I really appreciate it. When I said re-designing, it could be some elements of the airport, that is why I need your testimonies to understand the pain points of someone with dementia in the travelling experience

 

[karaokePete]

Thank you so much for your answer, I really appreciate it. When I said re-designing, it could be some elements of the airport, that is why I need your testimonies to understand the pain points of someone with dementia in the travelling experience

I have travelled with my wife in the years leading up to her diagnosis and then post diagnosis in the last few weeks.
My wife's main issues arose at check-in, security and boarding/on-board. These issues involved confusion and not understanding how to queue, scan boarding passes, remove metal objects etc. Prior to diagnosis I was only allowed to give limited assistance as I wasn't allowed to help her scan her boarding pass or help in security.
This year, post diagnosis I contacted the airline and Belfast International Airport. The airline were not helpful as they said if I registered her Alzheimer's they would take us out of the seats we had paid for as they were two seats near an exit which I had chosen so that I could manage her without a stranger sitting beside us - I chose not to register her. Belfast airport were more helpful as they issued us, after a little persuasion, with a lanyard to signal her as a person with a hidden disability and this helped us with security and boarding. However, the latter system only applied to Belfast, not the airport where we arrived, which only catered for wheelchair cases.
If airlines could be persuaded to give Dementia sufferers and their carers 2 seats without a third person being beside them and airports could be persuaded to adopt the hidden disabilities assistance more widely it would be useful.

 

[bubblah]

It might be a stupid question, but do you think, even if an airport answering to these criterias, people with dementia could travel alone or with assistance?

 

[karaokePete]

It might be a stupid question, but do you think, even if an airport answering to these criterias, people with dementia could travel alone or with assistance?

My wife couldn’t travel alone but she could manage with assistance - she just did. However, to be fair, someone with more advanced or complicated problems would be different. For instance Amy mentioned an incontinent person and I wouldn’t even think about flying with my wife if she had that problem.

 

[Shedrech]

hi bubblah
that's a tricky point to answer
some people with a diagnosis are able to manage their own affairs and do travel
each individual is just that, individual

 

[Baker17]

I agree with Lady A. I travelled with my husband only a year after he was diagnosed and the airport was horrendous for him. He was quite well but obviously all the processing of information was the killer.

The queue to check in was far too long and trying to look after our bags and make sure he did not wander was a challenge. The bright lights also seemed to have an impact. Security lines too long too much noise which made him anxious and confused. Security staff yelling to take stuff out of hand luggage, other passengers rushing and not realising he was unsteady on his feet made this the worst part.
Far too much walking and he does not and will not use a wheelchair.
Once through to departures the toilet was also far away.
Again background noise and announcements every two minutes caused problems as people with dementia cannot process information.
I wish that at that moment I took him home NEVER again will we go through an airport.

Hi I was the same as you we never did it again just to stressful

 

[Baker17]

Hi Bake17. It is so sad that travel is so difficult but why put our PED through the stress!

Hi, it is sad because my husband loved to travel but I can’t put him or me through that anymore, thanks for replying

 

[Baker17]

Hi Baker17. It's one of the things we miss most. We had a villa in Florida which has now been sold and travel really was our delight.

BUT, I may try a cruise from Southhampton next year?.....

Sounds as though it might be an ideaI went to majorca on my own where we used to go, I thoroughly enjoyed it, me husband went in respite care for that week, I’d forgotten how to relax and de stress and I came home thoroughly relaxed my husband didn’t even notice I was nice and tanned so I didn’t feel as guilty

 

[bubblah]

How is it when you go to museums and exhibitions for instance? Does the fact that arts, musics, pictures etc are shown make the experience enjoyable despite the noise, the light etc?

 

[LadyA]

How is it when you go to museums and exhibitions for instance? Does the fact that arts, musics, pictures etc are shown make the experience enjoyable despite the noise, the light etc?

We had to give up anything like that about mid way through my husband's illness. He used to love museums, but once he got to a certain point in his illness, he just didn't have enough focus. He would just follow me around, not looking at anything himself, and quickly become bored. He had, all his life, gone to the Library daily, being a voracious reader. He could get through a couple of books a day, easily. Gradually, though, he lost the ability to first, comprehend what he was reading, and then to read at all. So he didn't want to go to the library any more. Couldn't understand why we were there.

He never lost the understanding of going to a nice cafe for tea and cake though!

 

[bubblah]

I have the impression that with the time we are their reliable rock, everything around them disappear and only us are their guide, am I wrong?

 

[canary]

I have the impression that with the time we are their reliable rock, everything around them disappear and only us are their guide, am I wrong?

Spot on.

Everything around is confusion that doesnt make sense. The bright lights and noise give my OH sensory overload. The last time we flew OH jumped up the minute the doors opened and disappeared off the plane totally forgetting about hand luggage. Getting our luggage off the carousel had been a nightmare the time before due to the wait and OH got into an argument with another passenger because he was convinced that her suitcase was his. Fortunately she was very nice about it and open the case to show him it was not his, but after that I decided to stay with just hand luggage. As I said, that didnt work either as I had to chase after OH and then there was a terrible problem as I had to find the authorities to retrieve our hand luggage as I wasnt allowed back on the plane. I would like to point out that OH is in early stages and had not been even diagnosed with dementia at that point.
We will not fly again

 

[canary]

We used to go to art galleries and museums a lot and OH used to find them really interesting, but now he gets bored very easily and cannot seem to see me in a crowd (or even only a few people) so if he looks at an exhibit if I am not in exactly the same place when he looks up again - even if I have only moved a couple of feet - he will not know where I am and panic. He will then think that I have gone on without him and start rushing around the different rooms and galleries. We went to the British Museum last year and I spent half an hour looking at the exhibits and 3 hours searching for OH involving the museum security, They put out announcements "would Mr xxx please go to the information desk", but OH was completely unaware of this.

 

[Amy in the US]

My mother is long past the stage where she could travel anywhere. She is still mobile and verbal, but she would not be able to endure the journey. It's a pity as she loved to travel and wanted very much to return to her favourite destinations. Realistically, this has not been possible for some years now. At least five, and maybe more like seven to ten. Before that she could have travelled if someone planned it, and accompanied her every moment, and dealt with all logistical issues. Her last actual trip on an airplane was close to 15 years ago. She had early dementia symptoms involving executive function, planning, et cetera-skills you need to travel.

The last time we took her to a public performance was at least six years ago and she did not tolerate it well. She sometimes does okay with performances at her care home, but other times it's too much for her, and she can't process what she sees/hears.

Everyone with dementia is so different, and fluctuates so much, and of course different types of dementia present so differently, that it can be hard to know. But travel and going to performances and so on is usually not going to be practical for some to many in the middle stages, likely not practical for most in the middle to later stages, and of course not practical for physical reasons for those in end stage.

I have heard of art museums having dementia friendly programs.