Oct 18, 2017

Travelling with Dementia: Edie and John’s Inspirational Journey

A dementia diagnosis does not mean a person has to forfeit their dreams and desires they have – even things as challenging and exciting as travelling.

At this year’s Dementia Australia’s National Conference – where the theme was “be the change”, Edie Mayhew and John Quinn spoke about their experiences travelling the world.

Travelling can be challenging even for people who are young and able – so it’s no surprise that travel can present unique challenges for people living with dementia. But that didn’t stop Edie and John.

In 2010, Edie Mayhew and John Quinn were both diagnosed with Younger Onset Dementia and Alzheimer’s Disease while they were in their late 50’s.

Edie and John are supported by their partners Anne and Glenys in their travels, and wish to show others what they have learnt about travelling safely, limiting stress, and maximising enjoyment.

The four of us travelled for two weeks after the ADI Conference Budapest in April, 2016. Most of this time was spent cruising the Mediterranean,” says John.

“Although Edie and I have both been diagnosed for seven years and share the same birth year, we both have very different travel profiles.”

“Edie and I come from the position that a dementia diagnosis is no reason to stop doing the things you enjoy.”

“In fact, continuing to engage with life, socialising with a broad range of people and, experiencing new things and places, may even slow the progression of the disease. We both enjoy living with this positive approach.”

Edie is a very experienced traveller, having travelled to China, Botswana, and Vietnam with her partner since her diagnosis – in addition to interstate national Alzheimer’s summit, conferences, committee meetings and, ADI Conferences.

“We are very fortunate to have been able to travel so extensively in our 33 years together,” says Edie.

“Dementia makes long haul travel for the two of us more challenging and it was becoming more difficult and stressful for Anne to manage.”

“Our planned holiday with John and Glenys after the ADI Conference in Budapest last year was our first experience in travelling with others since my diagnosis, and everything about the experience made it easier and more enjoyable.”

“It was easier, more relaxing and a more enjoyable trip for everyone. We had a fantastic 12-day Mediterranean cruise and hardly stopped laughing.”

“It is such a great way for someone with dementia and their partner to travel. The best part of the cruise for me was the all-day ice-cream bar. I never had a problem finding it.”

“The Travel Agent also organised Wheelchair Assist for me. It was my first-time using this assistance which made negotiating security, customs, boarding, Singapore and Munich stop-overs and luggage collection much easier.”

“Wheelchair assist is a great advantage in overseas airports when you have little time to get from one terminal to another. The assistant uses alternative, smaller, quieter checkpoints for customs and security so it is much less stressful.”

“My backpack was on the back of the wheelchair and my CPAP sat on my lap. Some attendants pushed other luggage as well and this made it easier for Anne.”

“Although our overseas travel has come to an end we feel confident we can continue to travel with the support of Passenger Assist for some time yet. You’re first on the aircraft and last off so you get to avoid the noise and crowds.”

“We now have the joy of Melvin, our dementia assist dog travelling with us. Whether it’s a train, tram, bus or aircraft, Melvin just settles in and enjoys the ride, free of charge.”

“He’s flown with us to Sydney and to Devonport. The approval process is tedious but worth it. Airline staff love assistance dogs.”

“Melvin is allocated a seat next to me and lies on the floor in front of that seat. We get bulkhead seats in bigger planes with Melvin and we love travelling with him. It’s easy to give up overseas travel now that we have Melvin in our lives.”

John was not a seasoned traveller like Anne and Edie, or even his own partner Glenys, “I don’t have as much prior knowledge about travelling to rely on,” he admits.

“Also, I personally have difficulty with planning and organising and learning new things therefore I’m very appreciative of others assisting me with all types of travel whether it be local, interstate or overseas.”

“I become confused about organising things, and this confusion results in concerns about my routine being different and uncertainty about the unpredictability of what to expect.”

“Therefore, I begin to show disorganised and confused thoughts in the weeks prior to travel about things that are probably simple tasks to others. So a period of distress begins days and weeks before I even leave our home.”

“Navigating airports is very challenging for me from the moment we arrive at an airport. The whole process is confusing. There’s additional external stimuli and busyness I feel like pacing up and down.”

“Because of confusion, I let Glenys check-in as I stand beside her. Glenys has health issues which make lifting the suitcase onto the conveyor belt to weigh it, almost impossible for her. “

“But I find that the placement of the suitcase is complex, so in the end I just watch her do it. Also, Glenys has to place our carry-on luggage in the overhead locker. It too, is complex.”

“The uncertainty of dealing with security and customs is also on my mind because there are hundreds of people in these areas. Once we have passed all check points and arrive in the waiting area I find I can relax.”

“Glenys is an excellent observer of the environment. When we travel, she’s adept at learning to adapt and accept change as it happens. Her calmness helps reduce any confusion and uncertainty, and she seems undaunted by any unexpected challenges.”

“My symptoms change throughout our travels so the specific needs that I may have, differ even over a few days because of the neurological sensory challenges where, for example, I can’t see. Yet there’s nothing wrong with my vision.”

Edie and John are strong advocates for living positively with dementia. They want to send a strong message that dementia is no barrier to travel.

“Local, State and National governments already mandate certain standards to cater to the growing number of people being diagnosed with disabilities,” says Edie.

“But not all disabilities are visible. Let’s all work together to make travel experiences more relaxing for all. This will assist us to better navigate all environments at home, locally and internationally.”


John’s Travel Tips

  • Additional time to arrive before a commitment of up to 2 weeks prior to an International Conference
  • Acceptance that ‘our travel day’, is ‘our travel day’. Nothing else matters
  • Glenys constantly readjusts her travel expectations, in light of changing circumstances as my needs change during a holiday;
  • If we consider a Bus Tour, we choose smaller companies like ‘BackRoads Touring’, with a maximum of 18 people; and, depending on the specific tour, can stay between 2-4 nights in the one Hotel.
  • After discussions with Anne and Edie about Wheelchair Assistance in Airports, we won’t travel any other way now, even within Australia
  • We are aware that it takes me up to 3 months to recover after long-distance travel, when organising additional advocacy commitments afterwards.
  • We always took documentation about my medications for overseas travel, but usually only take a little extra medication for domestic travel.
  • We even leave my prescriptions with my Chemist, who made arrangements with a chemist where we were staying. We always take a photocopy of scripts. I don’t need any additional stress when travelling if something unexpected happens.

Edie’s Travel Tips

“There is greater potential for the unexpected to occur, when traveling. Therefore, pre-planning is essential to increase the likelihood of a better travel experience,” says Edie.

  • A letter from your GP or specialist listing all medications and any other medical information, such as the need to use a CPAP machine for sleep apnea, is required when travelling overseas to satisfy customs.
  • Carry the original doctor’s letter; copies of your medication prescriptions; and, copies of the first page of your passport and your credit cards, in carry-on luggage.
  • Carry photocopies of those documents in your checked-in luggage, and, where possible, also with a travelling companion. You may choose to scan and email an electronic copy to yourself as well.
  • Place your medications into carry-on luggage in case checked luggage is lost in transit.
  • As mentioned, we recommend Passenger Assist or Wheelchair Assist for expedience and convenience. It makes a difference from check-in through to luggage collection, and customs if relevant.
  • Having airline assistance to manage times of departures gives a sense of relief and comfort to both the person living with dementia and their companion.
  • It’s a good idea to download the Smart Traveller app which provides a travel checklist and other advice. Also, inform the Department of Foreign Affairs and Trade of your travel plans.
  • If nothing else it may reassure loved ones who aren’t travelling with you, to know that you are safe, if something unexpected occurred.
  • Some Railway and Bus Stations in Australia have a Traveller’s Aid to assist passengers. Many trains now have ‘quiet carriages’ on each service.
  • More and more places are providing spaces that are a little quieter than where most travellers wait. Ask if yours does.
  • Many people are still able to drive for many years after a diagnosis of dementia. Whether it’s you, or your Care Partner who is driving, allow plenty of time and plan the route to get to your destination. Planning additional stops for longer travel will result in a better and less stressed experience for all.
  • If you are a passenger, consider sitting in the back seat if you have visual sensory challenges due to your dementia. This may be more relaxing then being in the front where you constantly notice EXIT and ENTRY points and oncoming cars speed past.
  • Anything which is of assistance to the person with dementia is also going to benefit the travel companion by minimising organisation, planning and stress.

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