Dementia Support Line
Lived Experience Advisory Network Report for June 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.
Email: info@dementia.je
Call: 723519
Overview of the LEAN meetings in June 2025
People attending LEAN meetings in June, including people with dementia and family carers, were asked to share their experiences of the activities and services provided by Dementia Jersey.
A summary of the discussions can be found in the section below, followed by a further section with LEAN’s recommendations.
A total of 63 people contributed to these LEAN discussions in June.
The outcomes of the LEAN discussions in June 2025
- Firstly, we asked people attending the LEAN meetings to tell us which activities and services they attend or had ever attended. This was to help us understand the range of comments that followed.
Responses from people with dementia
Initially, most people with dementia were unable to remember which other activities or services they had attended, apart from the Meeting Place Project.
And in response to this one person said,
“Well how do we know they even exist and how do we get there?”
However, when we then described the activities, rather than using the name of the activity (for example, ‘the swimming group’ rather than SplashChat, or ‘the music group’, rather than Musical Memories) many engaged in helpful conversation about these. It seemed from these conversations that most popular amongst LEAN attendees were, the Meeting Place Project, Coffee and Connect, Art Exploration, and Walk and Talk.
Responses from family carers
Most carers attending LEAN had at some point attended carer support groups or/and had accessed the counselling and dementia advice services.
- We then asked LEAN attendees to tell us from their experience what had been most beneficial or helpful for them and/or for the person with dementia.
Generally, in response to this, there was a good deal of praise and head nodding for all the services and activities mentioned below and others too. The following are the experiences of people with dementia and family carers for the activities and services mentioned during LEAN.
Art Exploration:
“The peace and quiet is so good and it’s friendly.”
Carer Support Groups:
“I love the company”.
“The friendship group we have formed has been so helpful.”
“This has been good to meet people who are walking the same walk and we have since made a little WhatsApp group too.”
Club Uno:
“This isn’t for me, even though other people whose partners are in care homes attend. My partner is now in a care home, but I am not single.”
Coffee and Connect:
“Chatting, laughing and meeting good people.”
“It was nice to interact with other people, to be in a non-judgemental place and have a banter.”
“It’s a very chilled atmosphere.”
“It’s good because people have the same problem as you and you know you won’t be laughed at if you say something stupid.”
Counselling:
“It’s helpful to have time, and a place to go, and to say things that are difficult to speak about with your family.”
Dementia Advice
“It’s so good because you can bring up anything with a Dementia Advisor.”
Dementia Information Program (DIP)
“I didn’t know about this. I attended something similar at the Memory Clinic (Memory Assessment Service – MAS) some time ago, but I think this would be more useful now.”
“I have done both the MAS course and DIP and I think the DIP course is more up to date and gave me a great perspective.”
“I am on DIP at the moment, and the carers are getting a lot of useful information and emotional support. The balance of the course is very good.”
Fun and Games:
“You don’t feel alone there.”
“If you join in something like that, it’s something to look forward to.”
Meeting Place Project:
“It’s a good chance to laugh.”
“It’s good to meet people like you.”
“It’s nice to meet these guys. It makes you more positive.”
“I accept I need to be occupied even if I can’t play golf any more. You need to do something different to activate your brain and keep being interested in life. My dad had a dull life, and I want mine to be different.”
“I love meeting different people”
“Doing this makes it more normal.”
“It’s nice not to feel restricted in what you are saying and have an opinion.”
“Before I was careful about saying something wrong. It’s not like that now.”
“I think this group is really amazing and the helpers are great. It’s brilliant.”
“I can’t spell and a volunteer helped me. It’s nice to feel you can ask.”
“It’s doing me good.”
“The biggest thing you give is confidence.”
Musical Memories:
“The music sounds so good and it makes me feel good”.
“I’ve been very impressed. It’s been so helpful.”
“It’s brilliant. It’s a busy venue and Matt is so brilliant.”
Pétanque:
“It’s competitive, it’s social, it’s important to have a reason to get up, but the time goes too quickly.”
Walk and Talk:
“Mixing with other people is good otherwise I would be sat at home watching the TV which is a waste of time.”
However, amongst all the positive comments were others who said that because the person they cared for refused to accept they had dementia, they could not attend the activities described as being as so beneficial by others.
- As Dementia Jersey is always keen to improve the quality of services it provides, we asked attendees to tell us what they thought we could do better and of any changes we could make to our current activities and services to improve things.
Although most attendees were very positive about the activities and services provided by Dementia Jersey, some people commented that transport was the biggest problem for them. Some said that they always found it difficult getting to the activities and services and had to rely on lifts or the buses.
One person with dementia said,
“I think we’ve all got problems getting here and it’s hard to depend on people all the time.”
Another person questioned why there were so relatively few men attending Dementia Jersey activities and services but made no recommendations related to this.
And another person said,
“I had no idea what to do when my husband had a fall and I could not pick him up and another time had a fit and I did not know what to do.”
This encouraged others to describe similar experiences with all agreeing that because they and others were not sure what to do in emergencies, Dementia Jersey could offer some advice or an information leaflet or add this to the DIP course for carers.
Some criticism was also voiced about the carer support groups with some people finding that these to be too negative.
Concerning these, one carer said,
“This is one big talking shop and I can come out of there feeling more depressed than when I got there.”
And another person wanted to add that they didn’t feel they fitted in to these groups because the person they cared for had moved to a care home, yet they did not believe Club Uno was for them because their partner was still living saying, “I am not ‘uno’ single”.
Further ideas for improvements appear in the recommendations section below.
- And because two further services are being considered, including holistic needs assessments for people with dementia and for family carers, and an information pack specifically for people with dementia, we asked attendees to share their thoughts about these. As most of the comments related to this were recommendations, most of the responses are in the recommendations section below.
In general, most people with dementia said they knew very little about their own diagnosis and what to expect so they felt both a holistic needs assessment with regular follow-up appointments and an information pack to which they could regularly refer would be helpful.
The following are some comments from people with dementia and carers.
“Following my husband being discharged from the Memory Assessment Service we were on our own, we knew nothing about any of this. We could have done with these things then.”
“Am I missing out? I’ve never heard of these other things I could do so having something with it on would help.”
“I would enjoy talking to someone about what I’ve got. I need somebody to give me an answer.”
“The doctor doesn’t say much. He just says you have it. There’s no follow-up.”
- Then finally, because we are keen to meet people’s needs in any way we can, we asked attendees to tell us if there were any other activities or services that we are not currently providing that would be helpful or enjoyable.
In response to this most people said they were pleased with the activities and services they attended and only a few suggested any others. These appear in the recommendations section below.
LEAN’s recommendations
- Recommendation: Improvements to the current activities and services provided by Dementia Jersey.
Some LEAN members were keen to recommend a change of policy so that people with dementia could attend activities without the need to be accompanied by a carer.
These are some of LEAN’s recommendations,
“It can be very inconvenient to have to have a carer to take you places, so it would be better to go it alone.”
“If you had a minibus that could pick us up, door-to-door, now that would be a good thing.”
“I’d love the gardening club but that’s 2 buses, and I can’t follow the bus timetable so it’s hard, but a lift would make it happen.”
“What could be better? The person with dementia being able to go to other things on their own. This would be good for them, and they are quite capable.”
- Recommendation: Holistic needs assessments (HNA).
Everyone attending the LEAN meetings agreed that Dementia Jersey should progress their plans for HNAs for people with dementia and for carers because of their experiences of feeling unsupported following a diagnosis.
The following were some of LEAN’s recommendations for HNAs.
“We went to one post diagnosis session and then the rest were cancelled. Knowing very little about what we were facing and because dad had many other health issues, we didn’t know what to do. A proper follow-on would help.”
“Every person diagnosed should be referred to yourselves for an assessment, and this should be followed up at least every year. The comfort of speaking with someone who understands and can even tell you that you are doing OK is so worthwhile.”
“Yes, having a chat with someone after that diagnosis would have been helpful.”
“I think this isa fantastic idea. Walking through the door was a big decision, but being referred by the MAS would have been so helpful.”
In summary, most people recommended HNAs for both people with dementia and family carers and that regular follow-up appointments, so that people had the chance to raise new concerns, would be helpful.
- Recommendation: Information packs for people with dementia
All LEAN attendees said that they thought an information pack for people with dementia would be helpful.
The following are some of LEAN attendees’ comments and recommendations.
“After your diagnosis there is a complete void, so yes, this would be helpful.”
“Well, it wouldn’t do any harm.”
“Sometimes we just don’t know about your activities, or we forget, so a pack with information about everything would be good.”
“When you leave the Memory Clinic (MAS) they give you a book but it doesn’t have it all, so a book with it all would work.”
“It would be nice to have a piece of paper with it all written on. No doctor’s jargon. Down to the point with what might happen.”
“You should translate it if it’s in a hard language.”
Most people who had received a carer’s pack said these had been helpful and so would recommend the same for people with dementia. Others said that the content of these should be personalised and contain information that applied to each person and to their diagnosis and should be in a format that was accessible, easy to read, but not over-simplified.
- Recommendation: Additional activities and services.
Although most people were very content with the activities and services provided Dementia Jersey, a few further recommendations were made.
New activities included a football club, a Jerriaise peaking group, language courses, learning a musical instrument, a card game club and a crazy golf day out.
A ‘buddy’ or ‘sitting service’ was recommended by some carers which they said would provide some extra socialisation and respite time for the family carer. Others then added that this would be helpful as they found it difficult to find good professional carers and that they didn’t want to pay for care they felt was not what it should be.
An IT help service was recommended by other carers who said that they would appreciate help with computers, IPads and TVs so they recommended a session where people could bring their devises and access some technical help with these. Related to this, a carer said,
“A ‘borrow a grandchild’ service would be good as young people seem to know all about these things!”
A 24/7 helpline was a further recommendation for a new service, which most people agreed would be very helpful.
Additional training for emergency situations was also recommended with some attendees agreeing that this would be a good addition to the DIP course for carers.
A new support-focussed carer group, was recommended as an addition to the current carer groups. This was because some LEAN attendees felt that the challenging views expressed by some other members of the groups were unhelpful and too negative. They recommend these groups should be smaller, should focus on a specific subject and be for mutual help and support and be facilitated by a Dementia Advisor.
Further training for professionals, particularly for social workers and the staff at Social Security, which would include the lived experiences of people with dementia and family cares, was recommended. This would be,
“To help them understand what it is really like to have dementia, what it means, and what it’s like to try to look after someone with dementia.”
Dementia Jersey – June 2025