LEAP, September 2022

Lived Experience Advisory Panel (LEAP) Report for September 2022

About 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 subject for discussion, and because of its advisory purpose, the outcomes of the 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 facilitated 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 September 2022

In September the Lived Experience Advisory Panel members were asked to share their experiences related to driving for people with a diagnosis of dementia.

A summary of these discussions can be found in the section below, followed by a further section with the Panel’s recommendations. A total of 26 people attended the LEAP meetings in September, including 15 people with a diagnosis of dementia and 11 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 September 2022

1. Driving with a diagnosis of dementia: Three Panel members diagnosed with dementia are continuing to drive. They all said they felt safe doing so, and one carer who is regularly driven by their partner with dementia said, “I feel safe with them even though they don’t know where we are going, but I would never let them drive alone”. Another said they had been asked to stop driving by their GP but they had not stopped and this was never followed up. 
2. Problems people with dementia have experienced when driving: Those who were continuing to drive said that they found the experience more difficult. The challenges they had experienced included: finding it difficult to park, forgetting where they had parked, struggling to find their way particularly when taking an unfamiliar route with a diversion, difficulty using parking tickets, worried by other road users, and being stopped by the police for driving too slowly.
3. Timing of stopping driving: Some Panel members with dementia shared their experiences about the timing of stopping driving, and of those who did speak about this, most thought that they stopped driving sooner than necessary. One member said, “I really now regret stopping when I did, it was too early”. Two other members said they gave up when the time was right. However, some carers said the person with dementia was driving beyond the time they believed it was safe for them to be driving and another said that they had to get the doctors involved as the person “just wouldn’t listen to me.”
4. Feelings about stopping driving: One Panel member said that they were really angry when they were told to stop driving and said, “This annoyed me to hell”. Another said, “I was shocked. I was told point blank I could not drive”, and another person said, “A stubborn old woman in the Parish Hall, sat behind her desk, just said I couldn’t drive with no care for how I felt”. And another said, “I lost all my freedom with that.” And another person with dementia added, “I don’t know what we would do if I couldn’t drive”.
5. Experiences and effects of stopping driving: While some Panel members said that they had got used to not driving, other said they did not like to have to rely on other people to transport them and others spoke of how hard it was to lose the independence that driving gave them. One member described this as a “significant, negative life change for my partner which they have never really got over”. Some carers also said that the person with dementia blamed them for the loss of their licence and one said, “I was made to feel so guilty for years afterwards”. Several others said that they had to hide the car keys, one saying this was because, “I was so worried they would go out and kill someone and not even remember it”. Another said, “I made them stop, no one else, and they were very angry with me”. And another said, “Eventually after a long time, they dropped the issue, but it took so long because it was just so, so important”. Further to this, two other people drew attention to the fact that their driving licences were also very useful ID documents and without a licence one member said that they had, “suffered the dual loss of not being able to drive and having no ID”, adding, “This is an awful double loss and biggest disappointment of all.”
6. Information about licences and insurance: Almost all Panel members said that they were unsure about what they needed to do regarding driving following a diagnosis of dementia, with one carer saying, “I don’t know, there just seems to be one rule for you and another for someone else, or no rule at all!”. There was some confusion regarding: the information insurance companies needed, if a person with dementia should drive or not, how to actually stop someone from driving, and concerning the role the Parish Hall had in this, summarised when one Member said, “Well who is in charge of this anyway? The GPs, the other doctors, the Parish Halls as they give out the licences, or the police, or family members?” One person however added, “The only place I found all the information I needed was from Dementia Jersey so that was good when I got it”.
7. Driving tests: There seemed to be a range of experiences regarding driving tests. Some Panel members said they had never been tested nor asked to take a test, while others said that they had a test which did not involve them driving. Some said that they had both a cognitive and a practical test. Some said that they had not been charged for tests and others that they had been charged significant fees. Related to this one Panel member said, “Dr N asked me to draw a clock face with the number 5 on it and then asked me to read a number plate for which I was charged £100!” Some Panel members said that they were quite shocked that the person with dementia had passed a test when they thought that they were unsafe to drive. The Panel were unhappy about this range of experiences. Some felt there should be standardised tests for everyone and that the costs should be minimal and certainly equal. One Panel member with dementia said that if they had been made to take a test they would be, “bound to fail because it would be so stressful”. Further to this, although some members were aware that driving would be an issue at some stage, none had seen, or were aware of the ‘Driving with Dementia’ leaflet available from the Memory Assessment Service.
8. Using taxis: Some Panel members said that although taxis were expensive, they had to rely on these as they could not drive and the bus service did not get them where they needed to go. Others said that taxis were “a last resort” or “just too expensive to be bothered with”. One shared a distressing experience when a taxi driver had arranged to pick a person up, was moved on by a traffic warden and so was not in the planned pick-up place. Others spoke of drivers being impatient and not understanding their passenger’s disability.
9. Using buses: Five of our Panel said that they now rely on the buses which they said were helpful and made a difference to them, but others said that they were not on a good route and that because of this they did not use the buses. Others said that they were “just not physically mobile or able enough to use a bus”. Some Panel members shared information about the AvanchiAccess and AvanchiAccess+ bus pass scheme, but many were unaware of this and disappointed that no one had given them information about this.
10. Blue Badge – Disabled Parking Scheme: Most of the Panel members did not think they, or the person with dementia they cared for, would qualify for a disabled parking permit as they did not think the system considered them ‘disabled’ and only 3 of the 26 attending these LEAP meetings knew that they could/or had obtain/ed one of these. One of these said that they had followed the advice of a friend and that it had then been more straightforward than they had thought.
11. Hospital transport service: All Panel members said that they were aware that there was a hospital transport service, but they did not know the eligibility criteria for this nor how they could apply for it. Therefore, no one had used it. However, all members said that free, accessible and timely transport to and from the hospital and other centres for medical appointments would be a significant benefit to them. One person said that they had tried to access this in the past but that they had given up on it “because no one answers the phone”.
12. Parish support schemes: While very few members had accessed help from the Parish support schemes, most were aware of these and would consider asking for help.

Panel members’ recommendations concerning driving

1. Recommendation – Information and advice: All Panel members agreed that the safety of all road users was of the upmost importance and therefore recommend that at the time of diagnosis everyone diagnosed with dementia should be given clear information, verbally and in writing, regarding all necessary actions, and that checks should be made to ensure that all actions had been followed. Some suggested that it should be mandatory for any doctor making a diagnosis of dementia to inform the Parish Hall of this and for them, as the issuing authority, to take the appropriate actions and any follow up actions, rather than rely on this information being given to the person with dementia to action. While there was general agreement with this, not all shared this opinion. All Panel members however said that this essential information should be shared with all family members with consent to access medical information or with Power of Attorney for health and welfare. They also recommend this includes what to do when someone refuses to stop driving or to have a driving test.
2. Recommendation – Driving tests: The Panel recommend that tests should be standardised, either for everyone with a diagnosis, and then annually thereafter, or by age from 65 years for everyone. Some Panel members said that this would ensure any bad drivers were removed from the roads and that mandatory testing for everyone would help reduce the stigma of being tested and not being able to drive.
3. Recommendation – Understanding: Because all Panel members had either significant or traumatic experiences related to driving, they recommend that any professional discussing issues related to driving, or testing a person’s ability to drive, should be sensitive, skilled, practiced and sympathetic about the substantial changes that occur when a person’s licence to drive is removed, or there is the potential of this.
4. Recommendation – Charges for driving tests: All Panel members agreed that charges for these tests should be the same for residents of all parishes, or that no charge should be made if these tests were required from 65 years, as this would be discriminatory by age.
5. Recommendation – Subsidised taxi service for anyone with a disability: All Panel members said that a subsidised taxi service would make a significant difference to them being able to attend medical appointments, visit family and friends and engage in therapeutic activities. They therefore recommend that such a service should be made available.
6. Recommendation – More frequent buses and additional bus routes: The Panel recommend this, not only for themselves and their particular needs, but also for others with disabilities and the elderly living in locations not covered by current services.
7. Recommendation – Information about the AvanchiAccess and AvanchiAccess+ Liberty bus pass scheme: Because some Panel members knew nothing about this scheme until other Panel members shared their experiences of it, the Panel recommend that information about this scheme should be more accessible, including being provided at the time of diagnosis.
8. Recommendation – Dementia awareness training for bus and taxi drivers: While some Panel members said they managed to use buses and taxis, others with less positive experiences recommend that all drivers of public service vehicles should have at least some basic training in supporting passengers with disabilities including dementia.
9. Recommendation – Promotion of ‘Blue Badge’ scheme: Because many Panel members did not know that this scheme could be available for people with dementia, they recommend a public relaunch of the scheme to include this information. Panel members also recommend that this information should be made available at the time of diagnosis, even if a person at the time of diagnosis did not need or qualify for this scheme.
10. Recommendation – Hospital transport service: Because most Panel members knew there was a hospital transport service but did not understand the eligibility criteria for this or how to, or were unable to access information about this, they recommend changes. These include a public information campaign, and for details of this scheme to be added to all appointment letters sent to patients. The Panel believe that this, together with their other recommendations, would ensure everyone could access essential health care.
11. Recommendation – Parish support schemes: Because Panel members were aware that social care packages were not meeting all people’s needs, they recommend that the Parish support schemes could make their varied services better known to parishioners. However, the Panel voiced concern that voluntary assistance should not be seen as an alternative to professional help. They recommend that all Parish volunteers should have at least some basic training in supporting people with disabilities including dementia.

Dementia Advisor Team – September 2022