Dementia Support Line
Lived Experience Advisory Panel Report for December 2024.
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 4 times a year, 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 submitted either by panel members or from other interested parties via Dementia Jersey’s staff.
LEAP is facilitated by our Clinical Lead.
Please contact Dementia Jersey if you would like more information about our LEAP.
Email: info@dementia.je
Call: 01534 723519
Overview of the LEAP meetings in December 2024
In December the Lived Experience Advisory Panel members were asked to share their experiences of Jersey being ‘dementia friendly’. We were interested to hear from people with dementia and from their families and friends.
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 46 people attended the LEAP meetings in December.
All information provided below has been anonymised.
A summary of the discussions during LEAP meetings in December 2024
1. Firstly, we discussed people’s experiences of staff working in Jersey’s health and community services, by asking panel members if they felt that staff had a good understanding of dementia, and the needs of people with dementia.
People’s experiences were varied in response to this. Most, people with dementia felt that staff had a reasonably good understanding of dementia and of their specific needs, while family carers’ experiences were less positive.
One person with dementia said,
“I feel OK about this. Yes, I think so.”
Though another, with some humour in his voice added,
“Well, I’m the one with dementia and I don’t really know what it is or what I need, so I don’t expect anyone else to.”
A carer said,
“It’s always a bit hit and miss as some people seem to understand and others certainly not. On one occasion I couldn’t even understand what one hospital doctor was saying, and an explanation he was trying to give, so I have no idea how (relative’s name) was supposed to understand.”
Another carer said,
“It’s not relevant now because when my husband ever called to arrange any appointment or have a conversation with any staff, they would always make it too complicated for him.”
In response to this another carer added,
“People with dementia have to depend on their families for this.”
Another added,
“No, it seems that many of them have no experience of people with dementia and a lot depends on the receptionist you get at the GPs.”
During this part of the conversation, several panel members said that they thought one of the issues for staff working in health was that they often did not seem to know that the person had dementia, if they were attending an appointment unrelated to their dementia. They questioned the level of communication between health service providers, or if such information was shared, if this had been read and noted.
In relation to this, one carer said,
“I know sunflower lanyards work, but my wife should not have to wear one to let medical people know about her dementia.”
Discussions continued about the hospital with some panel members saying their experience had not been good. This was not because of the building itself, but mostly because staff seemed not to be able to manage patients with dementia who were often distressed, or did not seem to appreciate what might be difficult or distressing for them. They also acknowledged that their relative with dementia had worried or disrupted other patients in the ward. The panel’s recommendations for hospital staff are in section 2 of the recommendations below.
Another carer said they were aware of a scheme to discretely identify in-patients who had dementia and to alert all staff to the fact they may have additional care needs. However, they said that when their relative was in hospital no such identifiers were being used. Most of the panel believed these would be helpful.
One person with dementia said,
“It was terribly bad. I was moved around so much. 4 different places and one day my family couldn’t find me and it was always so noisy.”
A carer, when describing the experience her mother received in A&E/ED, said that although the care was generally good, one member of staff allocated to look after her mother was unsympathetic to the fact that she frequently asked to use the toilet. This staff member stopped her using the toilet, saying she just could not need it again and that it didn’t matter because she was wearing a pad. She said this led to her mum becoming extremely agitated and she herself getting very annoyed.
However, another member spoke extremely highly of the care in A&E/ED here in Jersey in comparison to the UK saying,
“It’s first class here. It’s the best. I’m glad I’m here now and not there.”
2. Secondly, we explored people’s experiences in the community and if they felt that staff (in shops, banks, the Post Office, and bus drivers etc.) had a good understanding of dementia and the needs of people with dementia.
Panel members agreed that most older staff seemed to have a better understanding, and that staff reacted to people’s age, rather than specifically to their dementia.
Some commented that it would be difficult for staff in the community to know how to respond to a person with dementia, with one person adding that because people with dementia usually looked well and “you can’t see dementia”, it would be hard for them to “get things right”.
One carer said.
“I think they do just treat all older people differently, and maybe there is still some respect for your elders.”
And a person with dementia shared a similar comment saying,
“People look after the old.”
However, one person said that they did not like going to town because they found this,
“Daunting, and I’m frightened of making a mistake.”
and another said,
“I avoid town because it’s so busy with so many people rushing around.”
Others felt that if staff had experience of dementia in their families, they would be much more likely to recognise its symptoms in their customers or clients and be able to assist them appropriately.
A person with dementia, in response to this said,
“Yes, I get it because I’ve got it!”
Concern was voiced about how well staff in Parish Halls were able to recognise symptoms of dementia and if they knew the correct sources of assistance for people. It had been some members’ experience that this appeared to be lacking. Further to this there was concern that staff may not know what to do if they felt a person was vulnerable and appeared not to be able to understand the information they were given. Their recommendations for Parish Halls are noted in section 3 of the recommendations below.
One former carer spoke about her experiences with an undertaker. She said that they had been insensitive just after her parent had died and wondered if undertakers would benefit from training we might be able to offer.
3. We then changed the focus of our discussions to consider if LEAP attendees felt they had all they needed to live well, safely and comfortably at home.
Responses to this were again very varied.
Most LEAP members with dementia said that they had all they needed to live well at home, with most who lived with a partner saying that if they needed assistance with anything, their partner helped them.
One person with dementia qualified this by adding,
“If I’ve got my music and a glass of wine I’m fine.”
Some however said that they missed doing some of the things they had done in the past, and were disappointed that they wouldn’t be able to do these again. One person mentioned playing football, another fishing and another playing in a band and driving.
Family carers’ experiences were however much less positive.
One carer said,
“I find communicating with him is so difficult. It is difficult to accept what has happened and h he does not accept it at all, so no, I don’t find we have all we need.”
Another said,
“We manage, but I just exist really.”
Another added,
“It’s a downward slope.”
At this point in our discussions, some of the panel said that the cost of care restricted them and because of this they did not have all they needed to live well. Their recommendations in relation to this are in section 10 of the recommendations below.
Sadly, many of these negative comments did not lead directly to any recommendations, but some LEAP members wanted to add more positive experiences to the discussions. Some said that the help they had with organising medications had made a big difference and because of this they coped better. Others agreed that having good, understanding friends made a huge difference. Another added that they had blocked their dad’s phone number which meant they were not getting troubling calls. Another added that the carers’ course they had done had also been good by providing them with a lot of helpful information.
4. Related to this we asked if people felt able to access all the services, amenities and buildings they wanted or needed, including health and care services, clubs, and transport.
This prompted many conversations. Some LEAP attendees said their Parish Halls had not been helpful at all and did not seem to know about dementia and were not able to recommend or signpost them to any services that might be helpful. Others had more positive and helpful experiences.
Most panel members thought the bus services were good but others who did not live on the main bus routes were less positive and said they had to rely on taxis or lifts from family or friends to get around. Most had had good experiences when using the airport with helpful staff.
Access to public buildings had not been a problem for any LEAP attendees but most said that it was the psychological and communication difficulties of their dementia, or a relative’s dementia, that made them feel awkward in social contexts and this limited their desire to participate in social activities or access services.
One carer said,
“It’s not really that difficult to get about or get into buildings, but it’s just I feel a bit embarrassed by it all.”
Discussions also included comments about the new out-patient department at Les Quennevais. Most LEAP attendees said that they were unhappy it was so far away from where they lived, and that this made them less inclined to keep appointments. Some also commented that they did not find the signage very clear and had not been able to find the department they wanted. Others said that once in the building it was a long walk to the department they needed to access. Generally, the feelings expressed were negative.
5. We then discussed panel members’ experiences of using assistive technology (including, but not limited to, trackers, audio reminders, emergency alerts/calls, speaking clocks and watches etc.)
This subject had fewer comments. Some people with dementia said they did not know what ‘assistive technology’ was, though most said that they were aware of this but had no interest in it. Some said that their families used this.
While some carers said they may in the future consider this, most agreed that they would not consider this as they did not feel they had the necessary skills to use it
One carer said,
“This is almost certainly not for us as I don’t even use internet banking because I am too scared of making a mistake.”
The only recommendation in relation to this is in section 6 of the recommendations below.
6. Finally, the panel discussed how LEAP could be more effective in helping to make Jersey more dementia friendly.
In response to this, most LEAP members with dementia said that they were pleased to be part of a group that could have some role in making things better in Jersey. Carers however were keen to question why more carers did not attend LEAP meetings when they themselves felt LEAP was so important. This encouraged others to question the name LEAP, with some saying that it was the thought of them being part of a ‘panel’ that had initially put them off. Because of this they considered a name change for the group might help. Different options were considered and are detailed in section 11 of the recommendations below.
Panel members’ recommendations for making Jersey more dementia friendly included the following:
- Recommendation – Raising awareness in schools
Almost all panel members recommend that schools should include lessons to help children learn about the needs of people with all illnesses and disabilities, including dementia, as an essential part of the curriculum. They believe this would be a step towards reducing the stigma of age and of age-related illnesses.
2. Recommendation – Training for staff working in health and community services
LEAP recommend that all staff working in any part of health should be well trained in understanding the needs of people with dementia and in communication skills. They recommend that extra consideration should be given for all staff working in the hospital.
3. Recommendation – Training for people working in the community
The panel recommend that training in dementia awareness and tips for communicating with people with dementia should be widely available, and specifically offered to some essential service providers, including Parish Halls, and for undertakers.
The panel also recommended that public health films should be shown on the TV to help the public learn about dementia, recognise symptoms and know how best to communicate with people with dementia.
4. Recommendation – People with dementia can help raise awareness
Many people with dementia who attended this LEAP meeting were in agreement that they could all play a role in raising awareness and helping to make Jersey more dementia friendly by being open and telling people about their diagnosis. They recommend that people with dementia should be encouraged and helped to do this.
5. Recommendation – Promotion of the use of sunflower lanyards
This subject came up again in this session, with all members saying that the scheme should be promoted as much as possible because of its benefits.
6. Recommendation – Assistive technology
Panel members’ only recommendation for this was the possible provision of a short course for carers to explain these technologies and the potential to help in their caring roles.
7. Recommendation – Use of forget-me-not in-patient identifiers
Most panel members who were aware of this scheme recommend its continued use in the hospital, and for it to be extended to the use of stickers on patients’ paper and online notes.
8. Recommendation – Extra assistance for people who live alone
The panel were aware that people living with a partner were likely to be better cared for and potentially safer than those living alone. They recommend that everyone with a diagnosis of dementia who lives alone has a Social Worker they can call when, or if, they feel they need any assistance.
9. Recommendation – Regarding signage, directions, and wayfinding
All panel members agreed that while clear signage was very useful for wayfinding, the most helpful thing was to have a person at a reception desk to point them in the right direction, some adding how helpful they found such staff at their banks. They therefore recommend this for all service providers.
10. Recommendation – A review of the Long Term Care Scheme (LTCS) and the cost of care
Some panel members were concerned about the cost of care and said they could not afford the care they needed for their relative with dementia and themselves to live well. They therefore call for a review of the cost of care and the LTCS.
11. Recommendation – LEAP to not use the word ‘panel’
Because some panel members felt that the word ‘panel’ implied something other than a ‘discussion’, LEAP recommend that the name LEAP should change, though ‘lived experience’ should be retained. A decision has been taken to change LEAP to Lived Experience Advisory Network (LEAN) from January 2025.
Dementia Jersey – December 2024