Dementia Support Line
Lived Experience Advisory Panel Report for November 2022
About Dementia Jersey’s Lived Experience Advisory Panel (LEAP)
This Panel brings together people with dementia and others with lived experience of supporting or caring for a person with dementia, to discuss issues of significance related to living with a diagnosis of dementia.
The Panel meets monthly, proceeds with an agreed subject for discussion, and because of its advisory purpose, the outcomes of discussions and the recommendations of the Panel are documented and disseminated to inform, as appropriate: government departments, health and community service providers, businesses, other charities and our team at Dementia Jersey.
Subjects for discussion are submitted either by Panel members or from other interested parties via Dementia Jersey’s staff.
LEAP is headed up by our Dementia Advisor Team.
Please contact Dementia Jersey if you would like more information about our LEAP.
Email: info@dementia.je
Call: 723519
Overview of the LEAP meetings held in November 2022
In November the LEAP members were asked to share their experience of Airport Travel.
A summary of these discussions can be found in the sections below, including Panel members’ experiences and recommendations for change.
A total of 26 people, including 23 pwd (people with dementia) and 3 carers, attended the four separate LEAP meetings in November, facilitated by Dementia Jersey staff.
All information provided below is anonymised and non-specific gender pronouns have been used.
Outcomes of the LEAP meetings held in November 2022
- Have you travelled recently?
PWD: “I travelled on 10th of September from Jersey to Southampton. They assisted me right up to the plane they were ever so good. The air hostess got me to my seat strapped me in and was so nice. Then I was taken off the plane and they walked me through to the front of the airport. I was with my two sisters, my son, his girlfriend and my wife. We were going on a two-week cruise. Airport assistance was prearranged by my wife who is even more organised than me. She had a wheelchair ready to get to the boat although I wish she had arranged an electric one”.
PWD: “I travelled to Southampton hospital I used my lanyard (sunflower one). My sister came with me, I walked through airport security myself”.
PWD: “I travelled to Madeira going through London. I had a sunflower lanyard, and it was brilliant. They were brilliant, my wife had to wait behind because of her hip (metal plate and complications with Xray machine), it meant I had to go through before she did. I asked for assistance, and the airport security took my tray and helped me go straight through and waited with me”.
PWD: “I travelled to London I didn’t need any assistance as my wife helped me”.
Other panel members said they had stopped travelling some time ago due to dementia and worrying that there would be no assistance.
It was noted that with the pandemic many people stopped traveling and just not started again this was not necessarily related to dementia.
The panel had a discussion and explanation around the sunflower lanyard. Some panel members didn’t have the sunflower lanyard and were given one for future travel.
- Do you know what a blue space is?
PWD: “Yes there is one in Southampton I’m not really sure what or who it’s for, but I used it”.
The panel discussed blue spaces, and it was decided a blue space should be recommended to Jersey airport on the departure side just before the departure gate.
- Would you still consider making a long-distance journey?
PWD: “Yes I would consider going somewhere, the planes are much bigger and more comfortable”.
PWD: “I would like to go back to the Falklands, but I have circulation problems’ (can’t travel long distances) “.
PWD: “I would love to go back to America but I’m not sure if I will be able to travel all that way”.
The panel discussed making a long-distance journey alone and agreed that travelling with assistance, a family member or friend would be best.
- Would you travel on your own?
PWD: “I would travel alone”.
Two panel members with dementia would not want to travel on their own they wouldn’t feel safe.
PWD: comment on the hospital: “I travel to Southampton with my wife for medical treatment and if the hospital didn’t pay for her to join me, I wouldn’t be able to go on my own. I am worried that the hospital will stop paying for my wife in the future.”
PWD: “Will the hospital pay for my sister who’s coming across from the UK to travel with me?”
The panel discussed the need for more information and guidance on what would be covered should someone with dementia needed family support with medical appointments in the UK.
- Would you ask for airport assistance?
Two carers from the panel had experience using special assistance – both had positive experiences at Jersey Airport.
Carer: “it was very difficult with check in staff at Jersey airport not being aware of the process around checking in battery powered wheelchairs. The airline requires information of wheelchair specifications, and the battery needs to be removed and taken as hand luggage. It took a long time to check in and resolve all the questions, then the same thing happened on the return flight, information wasn’t shared for the return flight, which was annoying because I had requested for the information to be shared so we didn’t have the same problem when we checked in for our return flight.”
- Did you have to go through security, how was that?
PWD: “I have a pacemaker, so I bypassed security I have a magic card (showed the card that indicates I have a pacemaker) and they used a magic wand to check me”.
PWD: “There are always people to assist you when you have to go through security”.
PWD: “The queue can be very long, and I sometimes feel tired”.
- What about airport facilities?
During a panel discussion no issues were reported finding their way around Jersey Airport – signage was good and the airport small. When drawing on past experiences most panel members reported good experiences with local airport staff.
The panel discussed that it would be challenging in a bigger airport, it could cause confusion, anxiousness and fear. Travelling alone to bigger airports wouldn’t be safe.
- What about screens and loudspeakers?
PWD: “My wife helps with the screens and the loudspeakers”.
The panel discussed screens and loudspeakers and most members said they hadn’t experienced any difficulty. Some panel members switch off hearing aids to avoid the echo from the loudspeakers.
Recommendations
- Access to information about help available at the airport and not just the Jersey Airport, at all airports.
- How to make use of the special lounges and be able to access information on which airports offer “blue spaces” and where they are situated.
- Jersey Airport to have a “blue space” near the boarding gates.
- Wheelchair passports with specific details on the requirements when taking a flight, be it for an electric or self-propelled wheelchair.
- Training for airport staff on dementia awareness and sunflower lanyards.
- Displaying posters at all airports informing the public of the reason why people wear the sunflower lanyard.
- Pwd and carer education on flying preparation and what to expect when going through security.
- Information from the Hospital Travel department regarding family/friends accompanying pwd on a flight to a hospital in the UK.
Dementia Advisor Team – November 2022