Dementia Support Line
Lived Experience Advisory Network Report for March 2025.
About Dementia Jersey’s Lived Experience Advisory Network (LEAN)
LEAN is a network of 6 groups, including groups for people diagnosed with dementia and other groups for the family and friends of people with dementia.
The 6 separate groups each meet 4 times a year to discuss a subject of importance or concern. These subjects are either suggested by people attending LEAN groups, or by the staff, volunteers or trustees of Dementia Jersey.
Because of LEAN’s advisory purpose, the outcomes of the discussions and the recommendations of the groups are collated in one document (with all personal details removed) that is then shared, as appropriate, with government departments, health and community service providers, businesses, other charities and our team at Dementia Jersey.
All LEAN documents are also available on our website.
LEAN is facilitated by our Clinical Lead.
Please contact Dementia Jersey if you would like more information about our LEAN.
Tel: 01534 723519
Email: info@dementia.je
Overview of the LEAN meetings in March 2025
People attending LEAN meetings in March, including people with dementia and family carers, were asked to share their experiences related to driving.
Because people wanted to share at length and in depth on this subject, this document contains more verbatim quotes and is therefore longer than most other LEAN reports.
A summary of the discussions can be found in the section below, followed by a further section with LEAN’s recommendations.
A total of 39 people contributed to these LEAN discussions in March.
The outcomes of the LEAN discussions in March 2025
- People attending all LEAN groups were asked to share their memories of their first driving experiences and their first cars.
This helped to introduce the subject and initiated much conversation. From this discussion only two people attending LEAN had never been drivers or owned a car.
People generally spoke of how much easier it was to drive,
“In the good old days when there were no cars but everyone was driving by 14 years old.”
- In the meetings for people with dementia, we asked both current drivers and people who had been required to stop driving to share their experiences. We were interested to hear about their understanding of the processes they were required to follow and their associated feelings.
People’s understanding of the processes involved in driving after a diagnosis of dementia
Initially in our discussions many people with dementia expressed some surprise that dementia could affect a person’s ability to drive. Then when discussing the processes involved following a diagnosis, less than half attending LEAN said they knew they should inform their Parish Hall of their diagnosis and very few said they were aware they should inform their insurance companies.
People’s experiences of cognitive tests with Dr Newton
The following are comments from people who had tests with Dr Newton
“The first question I passed because he asked what the name of the road was, and I knew because I lived just around the corner! But then it didn’t get any easier and then they tell you you’re not allowed to drive. And I tell you – if my wife was not such a good driver there would be – – !!”
“He (the doctor) tries to get you on little things, but then he actually said, ‘As far as I am concerned, I don’t want to see you for another 5 years.’”
“It’s not Dr Newton who should be making the decision. What does he know that the doctor at the hospital did not know? If anything, it should be a practical test.”
People’s experiences of the practical driving test
The following are comments from people who had practical driving tests.
“They won’t take my licence because I passed the test.”
“I wasn’t scared. I drove as normal and thought I was doing well but then she said I was too in the middle of the road in the country.”
“If the instructor is having a bad day, then you will have a bad day.”
“The car was different to mine so it was difficult to drive. I was nervous and not relaxed at all.”
“They didn’t tell you that you would be driving in the assessor’s car. It was a different car entirely and I was only beginning to get used to it when it finished.”
How people felt when being told they could not drive again
People’s responses just seemed to tumble out in response to being asked to describe their feeling if they had been told to stop driving.
These were some of the feelings they shared.
“I was devastated. I loved driving.”
“It was a poke in the eye.”
“This just devastates your life.”
“I felt it was so unfair. The car was different to mine and so much newer and the dashboard was all different – but I didn’t say anything because that would stand against me. But – it went back to the Parish Hall – and I got a letter. I was told I couldn’t drive anymore. How did I feel?!”
“ I got a very bold, rude letter from the Parish Hall telling me I had to stop which was just devastating.”
“I felt I was not part of society any more. This was it. I was gutted. My daughter told me, and I did not speak to her for a long time afterwards.”
“I wasn’t expecting to hear I could not drive and why should the Constable be telling me this when he never saw me drive and he’s not a doctor.”
“It took a long time to let me know. I was so nervous waiting I could have had an accident in that time.”
“You feel like you have lost part of your life.”
“Gobsmacked.”
Other responses
Some people with dementia, although they said they were disappointed not to be driving, seemed happier with this, and were more accepting and said,
“I wasn’t told. I decided.”
“I was driving very little anyway so it was my choice.”
“Actually, with the traffic today it’s not a bad thing.”
“It’s other drivers that are the problem, not a lot of us. They drive too fast in 20s or 15s and skip red lights.”
“I just get so nervous with things anyway that I chose not to go (for a test).”
“They told me I wasn’t fit to drive which was a bit harsh, but I wasn’t that disappointed, it wasn’t the end of the world, and my wife can drive.”
- In the separate meeting for carers, we asked people to share their experiences from their own perspective as carers, particularly concerning the information they were given, the processes involved, how they felt about the tests, and how if their family member had been required to stop driving how they responded to not being able to drive, and the impact this had on them as carers.
Experiences related to the information given about driving
Many carers attending LEAN said they did not know anything about these tests, nor the need for people to inform their Parish Hall and insurance companies about a diagnosis of dementia. Some also commented that their GPs had not raised this subject.
The following are some of their comments.
“I didn’t know anything about any tests but because my wife was so bad at driving, like driving with the handbrake on, I just stopped her altogether.”
Another said their relative with dementia had been told that although they could not drive a car, they could still drive a motorbike. This really surprised her as her husband had never driven a motorbike. He then decided to get an electric bike, but this proved so difficult that it, “added fuel to his already angry feelings about having to stop driving”.
“It was all very confusing which added to the difficulty. He could not name 5 trees or birds, yet he could have named 100 before. I found it so hard not to say anything. Even so the doctor said he could drive for another 6 months and then go back for another test. But then the Parish said he needed to have a practical driving test. He did this but came back so depressed as they said he could not drive. He still talks about driving now.”
“I thought it strange when we had not heard anything from the Parish Hall after I told them of X’s diagnosis, so I contacted them after about 18 months. But they just said that due to data protection they could not speak with me! But then they did check, and surprise surprise, they had filed a notification. I will never tell him (my husband) what I have done.”
Another carer said that because the doctor at the “Memory Centre” was away when they went for an appointment, she was told to book a practical driving test for her husband which she did. He passed this and “did everything correctly even though he had never driven the examiner’s car before”. This carer said she was still concerned, but her husband was adamant that because it was in black and white he was capable of driving. She then said, “everything was turned upside-down when the doctor at the Memory Centre said my husband was not fit to drive and that another test should have been done before the actual driving test”. She said her husband was“horrified” and that she “took the blame for this again and again and again”.
Another carer talked of how “ignored and belittled” she felt when she tried to share her worries about her father’s driving with his doctors. She said, “They gave the impression they knew better than me, but they don’t see him driving.”
“It never struck me that the 3 driving incidents my wife had in 2019 could be because of dementia but then in 2020 she was diagnosed, but it seemed his (the Connétable) only objective was to take her licence away. I don’t think the news was delivered well. She was very upset but after a while she didn’t seem to miss her licence. I think the whole process is just about covering themselves and it’s not done in a sensitive way.”
Another carer said, “I was given no information, but I had an idea that I should tell the Parish so I raised the topic with them and it was them who advised me to contact Dr Newton.”
And another said, “She had 2 tests that she passed but in the next 6 months she got her side mirror broken off 4 times. I didn’t know what to do so I wrote to the Parish Hall, GP and Social Worker. She then had a test with Dr Newton who asked her if she had had any accidents, and she said, no. She passed this test and kept on driving.”
Carers’ experiences of the cognitive tests with Dr Newton
Carers who had been with the person with dementia while taking this test expressed the following concerns.
“There were so many inconsistencies.”
“He just passed her because she had such a good rapport with him.”
“He passed him but he’s not safe.”
“My wife had her test 18 months ago and I thought she would fail. Very weird she didn’t.”
“I think it’s sad that as the next of kin we are not listened to. After some significant accidents I made some signs to him (Dr Newton) to indicate that I wanted to talk to him but could not. I don’t have great faith in the process.”
“I am grateful for Dr Newton’s involvement after he had been reported for dangerous driving to the Parish Hall and although he passed his first test after this, he failed 6 months later.”
“The test is absolute rubbish.”
Further to the above, some others also commented about what they considered to be the unfairness that people who lived in St Helier did not have to pay for these tests while other islanders had to pay £100 or more. One person commented,
“That £100 just added salt in an already gaping wound.”
Carers comments concerning the practical driving test
“They would never be able to drive as normal because they would be so worried, and they might have had a bad day, and they could be taken down narrow lanes with tractors.”
“How could anyone drive a modern car and in a test, well enough to pass a test?”
Carer’s emotional responses and feelings related to issues of driving
Carers told us of the distress the person with dementia felt, including feelings of being ‘isolated’ or ‘imprisoned’and ‘stranded’ and of an over-riding sense of loss, which had a direct effect on them.
Carers themselves talked of their own sense of guilt for their part in the process and some shared their own sense of isolation if they themselves were not drivers. Others spoke of the increased burden of having to be the “taxi service” for the person with dementia.
Some also told us that they felt the burden of responsibility for having to find ways to stop a person with dementia driving which included hiding keys, moving the car away from the house, disabling the car, and lying about it needing servicing.
The following are some further comments.
“I felt so in the dark about all this.”
“It was so awkward for so long. He just accused me of not letting him have any independence. It was terrible.”
“I worry about other people who don’t know about the laws about driving with dementia, or if they are aware, would not be able to stop someone driving.”
“I feel huge concern when people haven’t got a relative to intervein in situations and someone might be driving when they shouldn’t be.”
“He just can’t usually remember anything that happened 5 minutes ago, but this he keeps going on about and of how he’s quite capable of driving. He can’t understand why dementia should stop him. It’s awful to keep hearing this.”
“At the moment I just have to take one day at a time because my husband has just got a letter saying he has to repeat the assessment he did with Dr Newton last year and the other test. I just don’t know what’s to come.”
“If a person loses their licence, they’d never be able to get it back. It’s so complicated, so legal and so expensive, you just have to resign yourself.”
“My husband never forgave me for it – ever, yet I was the one who witnessed him nearly knocking over a child and going around a roundabout the wrong way.”
“It’s having to give the bad news that breaks the relationship.”
“There’s nothing person-centred or kind about this process at all.”
“You end up feeling so guilty.”
- As most people with dementia had stopped driving, our discussions included people’s experiences of using alternative forms of transport.
People attending LEAN said,
“It was a huge change for us because the buses are so bad in our parish.”
“I was, and still am, so lonely and I am too worried to use the buses.”
“We were told to use taxis instead! I’ve never used a taxi in my life. It was so upsetting but I wasn’t going to argue with him.”
- Because some people with dementia said they were still driving, we were interested to know about their current driving experiences and if they found anything about driving more difficult than before their diagnosis of dementia.
In response to this people with dementia said,
“I think I’m fine now, but it would be a real smacker if I could not drive.”
“Yes, honestly, driving at night is harder and people’s lights are so bright.”
“Oh yes, I would never drive a hire car now or another car or a car with a satnav or new technology or anything like that now. That would be impossible.”
“And I do worry about hurting people, and I worry about ever needing to take a test, so this makes it difficult.”
“No, I’m fine. Basically you know if you are not safe. My wife gives directions or points and it’s fine.”
“If you have to get somewhere and there’s no one else, you just get in the car and drive.”
LEAN’s recommendations
- Recommendation – Better and consistent information
Everyone attending LEAN agreed that, because so many people had been given different information or had apparently misunderstood the regulations regarding driving, consistent and clear verbal and written information should be provided. LEAN also recommends that it should be the responsibility of one person/role to ensure this information was given and understood.
(Note: MAS leaflet Driving and Dementia was updated December 2023)
- Recommendation – Informing family members/others of the procedures to be followed
As some carers reported that the information about driving was given only to the person with dementia who then forgot it or chose to ignore it, carers recommend that given the potential dangers to the driver and other road users, that this information should also be given to family carers/other agent.
- Recommendation – Family members/other’ opinions on driving competence
LEAN recommend that family members/other attending MAS with the person with dementia should be asked their opinion of the person’s competence to drive.
(Note: MAS ‘Questions to ask family members’ was updated February 2025)
- Recommendation – Procedures for checking that the regulations were being followed
As many LEAN members said they were aware that some people had not followed the necessary regulations and they were concerned that there were people driving who should not be, they recommend that procedures are put in place to ensure the appropriate actions are taken.
- Recommendation – Review of the cognitive tests and testing process
Because many people were unhappy with so much about the cognitive testing process, they recommend a full review of the tests, the training and assessment of the assessors, and the processes involved.
- Recommendation – Tests taken in person’s own car
Because of the difficulties many people face when driving a car that is unfamiliar to them, LEAN recommends that tests should be taken in the person’s own car.
- Recommendation – Carers should not need to deliver information about tests, results of tests, or the need to surrender licences
Because many people with dementia blamed their families for questioning their driving ability and for them losing their licences with significant levels of distress for all concerned, LEAN recommends that family members should never be in a position to need to initiate assessments, share the results of tests, or the need to surrender licences.
- Recommendation – Other transport options to mitigate loss of driving
Because LEAN attendees generally felt more isolated, lonely, less active, and less able to visit family and maintain friendships, they recommended other alternatives to help mitigate against these losses. These included heavily subsidised/minimum fee taxis for people with all disabilities including one carer; buses from all parishes going directly to the out-patient department in St Brelade; extra buses with extended routes; and an extended patient transport service with less stringent regulations.
- Recommendation – Repeat driving tests before the appeals process
Because most people believed that the appeals process would take far too long, would be unlikely to be successful, and would be prohibitively expensive, everyone commenting on this said that as an alternative, a second test should be offered, if appropriate.
- Recommendation – Statistics to be made available about RTCs
Because some LEAN attendees wanted to know whether or not dementia was a significant or a contributory factor in road traffic accidents, LEAN recommends that such data is collected, analysed and made available.
Dementia Jersey – March 2025