LEAP, July 2022

Lived Experience Advisory Panel (LEAP) Report for July 2022

Dementia Jersey’s Lived Experience Advisory Panel

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 agenda, 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 of discussion are broad and 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 July 2022

In July the LEAP members were asked to share their experiences of being out and about in Jersey, visiting shops, cafes, other places of interest and their experiences of travelling on the buses, on the ferry and by plane from Jersey, including the experiences of people with dementia or when accompanying a person with dementia.

A summary of these discussions can be found in the section below, followed by a further section with the Panel’s recommendations which they suggest would make Jersey more ‘dementia friendly’. A total of 24 people attended the LEAP meetings in July, including 12 people with a diagnosis of dementia and 12 supporters or carers of people with dementia.

All information provided below is anonymised and non-specific gender pronouns have been used.

Outcomes of the LEAP meetings held in July 2022

1. Travelling by bus: Most Panel members did not regularly use the buses, though 2 people with dementia did so. One said that they found the drivers to be helpful and courteous, giving them time to show their bus pass and time to sit down before driving off. The other said, “I find the whole experience very worrying. I get very het up, though I don’t know why I find it so difficult.” Other carers agreed that using the bus in their circumstances of accompanying people with dementia would be too inconvenient and too difficult and would involve walking further than they would like. For these reasons they always opted to drive or use taxis for any journeys within Jersey.
2. Travelling by plane: All Panel members with dementia said they would never travel by plane by themselves again as they found airports to be increasingly stressful places and knew they could easily make mistakes. Carers shared various experiences of travelling by plane with a relative with dementia. They also described this as stressful, needing to ensure the person with dementia was near them at all times, especially at security and when going through departure gates and then when collecting baggage. Panel members who had explained the person’s disability to the staff said they were treated with respect and offered appropriate assistance which they found very helpful. Others shared their experiences of using the sunflower lanyards which they said were extremely beneficial when travelling. Further details of this can be found in the recommendations section below.
3. Travelling by ferry: One Panel member said that they had experienced considerable difficulties when travelling by ferry when their partner with dementia was required to leave them (the driver of the car) and proceed to the passenger deck unaccompanied, which then caused them extreme distress by being left alone in unfamiliar circumstances.
4. ID information: As well as the sense of security offered by the sunflower lanyards, the Panel also discussed the usefulness of carrying ID cards that explained their disability if they were unable to communicate this at the time, or cards indicating that they were caring for a person with dementia who may need assistance if they themselves were in any way incapacitated.
5. Shopping – use of debit/credit cards: People with dementia expressed how pleased they were that they could now use their bank cards for most purchases without having to remember their PINs. Carers were equally pleased about the independence and security this offered their relative with dementia.
6. Blue Badge scheme: Panel members who were already accessing the Blue Badge parking scheme said this had been a significant help to them, particularly in St Helier.
7. Disabled toilets: Some Panel members said that although they felt awkward using disabled toilets when they did not have an obviously disability, they nevertheless appreciated these being available, with the larger cubicles being beneficial when using a mobility aid or for another person to assist.
8. ‘I am a Carer’ ID lanyard and badges: Some members had experience of using lanyards and badges indicating them to be the carer of the person they were accompanying. They said that they felt this to be more dignified than identifying the person they were with as a person with a disability, particularly if they did not have capacity to consent to this.
9. Reluctance to talk about/acknowledge dementia: Although in the early stages of dementia there can be few physical distinguishing features, its symptoms can at times impact a person’s ability to communicate effectively, to make appropriate decisions or to find their way around familiar places. Panel members said that they often found it difficult to talk about their diagnosis, or a family member’s dementia, but that when they did so they found this was usually beneficial. Recommendations concerning this are in the section below.
10. Trackers: The subject of using trackers was discussed, with some Panel members feeling this to be an invasion of a person’s privacy, though others said that this increased a person liberty, enabling them to go out and about as they wished. Carers said that these offered them peace of mind, knowing that should the person with dementia ever fail to return home, they could be found relatively easily.
11. Signage: All Panel members said that they had at times been confused by unclear signage. This included signs for various shops, entrances and exits to buildings including the hospitals in Jersey, and signs for toilets, including intended genders and for the entrances and exits to the facilities.
12. Signage and direction finding in the hospitals in Jersey: The Panel expressed strong concerns about the unclear way-finding signage within the hospitals in Jersey, including clear directions to various departments, clear directions to exits, and in particular the Panel noted that often when visiting the hospitals there was no one at the former reception desks to point them in the right direction for their appointment. Some had said that in a few instances phones had instead been provided at former reception desks but that the numbers provided when called were not answered.
13. Phoning to find information from businesses: Nearly all Panel members including people with dementia and carers, described experiencing some difficulties by not being able to reach the person they wanted with the given number, but were instead directed though a series of numbers to reach the services they needed. One person said of this, “Well, it might just have worked if this was a face-to-face meeting with someone, but I’m afraid there would be no hope in hell for me with such a complicated procedure to follow. I just need a person to speak to.” Another said, “It’s always a machine voice now. How can they know what I need?”
14. Online accessibility: “Everyman and his dog thinks that everyman has email.” While some Panel members with dementia said they had an email address and regularly used the internet, others said that they felt “disabled” because they could not communicate or access information in this way. However, all Panel members said they appreciated the efficiencies of this but nevertheless felt that there should always be paper copies of all essential information and options to complete documents in paper form.
15. Banks and Post offices: All Panel members said they were disappointed that so many local branches of banks and post offices had closed in recent years.
16. Availability of non-alcoholic drinks in cafes and restaurants: Most Panel members said they were pleased to see that most cafes, bars and restaurants now had non-alcoholic drinks on their menus.

Panel members’ recommendations to make Jersey more ‘Dementia Friendly’

1. Dementia awareness training for bus drivers, airport and ferry staff and other service providers: Although Panel members said bus drivers appeared to recognise some people may need extra support, they nevertheless felt that all transport staff and other service providers would benefit from some dementia specific awareness training. They believed this would help them appreciate the range of difficulties a person with dementia might experience when out and about in Jersey, and also of the most appropriate course of action should a person need further assistance.
2. To promote further the use of sunflower lanyards and pin badges: Because some Panel members had such positive experiences when wearing the lanyards, all members recommend that Dementia Jersey and other charities supporting people with hidden disabilities, should do all they can to promote and raise public awareness of the sunflower lanyard and pin badge scheme. They felt that while most members of the public would understand that a person may have a hidden disability, others may be less considerate without having their attention discreetly drawn to the fact that the other person had a disability. One Panel member with dementia said, “Sometimes it’s only one ‘tut’ which makes you feel useless and an inconvenience to others”. The Panel recommends that Dementia Jersey should promote the use of the lanyards and pin badges via their newsletter and join with other charities to promote these through various media.
3. To promote the use of ‘I am a Carer’ lanyards and badges: As with the sunflower lanyards and badges, the Panel recommend these are more widely publicised and made available.
4. ID cards/information: As many members spoke of the increased sense of security they felt by carrying cards with personal and next of kin contact details, and if they were carers, details of the person with dementia for whom they were caring, they all agreed that these should be more widely known about by the emergency services and members of the public. They recommend Dementia Jersey make dementia specific ID cards available and promote general public awareness of this.
5. Acknowledging dementia: While all Panel members appreciated that it can at times be difficult to talk about and acknowledge a diagnosis of dementia, they nevertheless recommend that people are as open as possible about this so that others can modify their conversations or actions as appropriate. One Panel member with dementia said that he now begins all his conversations on the phone and in person by saying, “Excuse me, I want you to know that I have Alzheimer’s and this makes my conversations difficult at times.” He said that saying this before any conversation had been liberating for him and just helped him relax into the conversation.
6. Trackers: All Panel members agreed that if a tracker was to be used, the person with dementia should, if they were able, consent to its use. Otherwise, if a person still enjoyed being out independently but could not consent to the use of a tracker, a ‘best interest’ decision should always be made with the advice and assistance of a Social Worker.
7. Signage: The Panel recommend that in all cases, there should always be a good number of signs provided along routes, and that these should be in an easy to read font and of the right size, and where possible should include clear, simple symbols.
8. Reception desks: All Panel members agreed that their visits, particularly to the hospital, were a lot less stressful if they knew exactly where they should be in the building and that if they did not, that there would be someone to ask. They therefore recommend that where possible reception desks should be staffed.
9. Accessibility of information in paper form: Panel members recommend that all essential public information should be accessible in paper form as well as online.
10. Banks and post offices: All members recommend that, as far as possible, banks and post offices should retain as many premises as possible to provide the essential services that so many people continue to value, especially for those who do not have internet access and who cannot travel to town to access the central offices.
11. Blue Badge parking scheme: All Panel members recommend that this scheme is more widely publicised as many were unaware that it could be used by people who had disabilities related to dementia. Many members were of the opinion that this scheme was only available for wheelchair users or people with other significant physical disabilities.
12. Disabled toilets: Because all Panel members had benefitted from being able to use disabled toilets, they recommend more of these being available, particularly the ones not requiring ‘radar keys’ to access.
13. Increase in the availability of non-alcoholic drinks: Because all Panel members appreciated the benefits of limiting alcohol consumption, they recommend that non-alcoholic drinks are more widely available and included alongside other drinks in the main menus.

Dementia Advisor Team – July 2022