Dementia Support Line
Lived Experience Advisory Network Report for June 2026
About Dementia Jersey’s Lived Experience Advisory Network (LEAN)
LEAN is a network of 8 groups, including groups for people diagnosed with dementia and other groups for the family and friends of people with dementia.
The 8 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.
The content in all LEAN reports reflects the experiences of people attending LEAN meetings and does not necessarily represent the views of Dementia Jersey.
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 2026
Our LEAN meetings in June focussed on people’s experiences of the advice and support services available in Jersey, including those provided by Dementia Jersey, Health and Care Jersey and others. We were interested to hear which services people had used, their experiences of each of these services, and about any recommendations for improvements. We were also interested to hear people’s thoughts about the provision and accessibility of such services more generally.
A total of 60 people contributed to these LEAN sessions in June.
A summary of the discussions can be found below together with people’s recommendations for change.
- Dementia Advice at Dementia Jersey
Very few people with dementia had received advice from a Dementia Advisor at Dementia Jersey, though some said they would have liked this if they had known about this service. However, some who had accessed this service said,
“The Dementia Advisor helped me get on this (the Meeting Place Project, MPP) so that was good. I was resistant at first, but they give you lots of advice here.”
“We had a good chat, and they helped me get the ball rolling. It’s helped me accept it.”
Almost all carers attending LEAN had accessed the Dementia Advice service and said they had found it helpful. Some comments included,
“This is an essential service. You need this.”
“I don’t know how I could have managed without them (Dementia Advisors).”
Recommendations for change
- As most MPP attendees did not know about the Dementia Advice service they recommend that all attendees should be reminded regularly about this service and given access information.
- Further to the above, LEAN recommends that Dementia Jersey should produce a pack for people with dementia, (like the carers’ packs) so that people with dementia have their own file with all relevant information.
- Emotional, Psychological and Counselling at Dementia Jersey
Only two people with dementia said they had spoken with a counsellor at Dementia Jersey and both said that this had been helpful. One commented further saying,
“I thought that I couldn’t say what I was thinking to them, and then I did, and it was really OK and good to have said it.”
Another person then added,
“Just coming here (MPP) gives me all the emotional support and understanding I need.” Many others then agreed with this comment, saying,
“This group (MPP) has its value in a very simple way.”
“This place is an immense step forward for many of us.”
“It’s been the saviour for me.” I always feel better when I leave here, so that’s good support.”
Some carers had accessed the counselling service at Dementia Jersey which they said they found helpful, with one person adding,
“This helped me so much when my wife passed away.”
Some however said they did not think this service was promoted very well and one person said,
“Had I known about it (the counselling service) sooner, I could have benefitted sooner.”
Recommendations for change
- Because not everyone had been aware of the counselling service provided by Dementia Jersey, LEAN recommend that this is promoted in the media, social media and via general Dementia Jersey email and paper communications.
- Holistic Needs Assessments (HNA) at Dementia Jersey
As HNAs are very new at Dementia Jersey we were not surprised to hear that very few people knew what these were and that even fewer had had an HNA. One person said, “Whatever they are they sound like a good idea.”
The 2 people who had had HNAs spoke highly of these and said how helpful it was to have the opportunity to talk through a whole range of subjects. Others were interested in these following this discussion.
Recommendations for change
- LEAN recommend that everyone diagnosed with dementia and their family carers should be offered a HNA, with this offer repeated periodically by the person’s GP or other health professional. This was summarised by one person saying,
“They should do this because it’s difficult to know yourself when you need help, it’s difficult to know who to ask for help, and it’s actually difficult to actually ask for help.”
- Dementia Advice from other providers
Most people with dementia said they had spoken either with their GP or a doctor at the Memory Assessment Service (MAS) who had given them information about their condition. One person said,
“I go to Dr Melendez directly. That’s lovely support to have.”, Another said,
“The memory doctor at the hospital helped when I needed to understand what was happening to me.”
However, most said this was some time ago when they were first diagnosed and had since forgotten what was said and they did not think they had access to any written information about their diagnosis, medication, alternative treatments and support options. One person said,
“I am still angry with the Memory Assessment Service. I was very confused when I was diagnosed and they didn’t help me understand all this.”
People with dementia had mixed experiences with GPs. One person who was pleased with their experience with their GP said,
“She was brilliant with all the advice I needed.”
In contrast another person said,
“All they did was send a letter with the worse news in it.”
Many carers described the difficulty they had getting the information and advice they needed, at the time they needed this from any Health and Care Jersey (HCJ) staff. One person said,
“I had no idea where to go once she had been discharged. It was just luck that a friend told me about them (Dementia Jersey).”
Recommendations for change
- Because people with dementia said that they did not know much about their own condition and did not feel they had access to any advice about this, they recommend that people with dementia should have regular follow-up appointments at which they are encouraged to ask questions and given summaries of their diagnosis, treatments and medications.
- An information pack was also suggested during this part of the LEAN meetings, for both people with dementia and family carers.
- Emotional, Psychological or Counselling from other providers
One person with dementia said they had spoken with a psychologist when they were a patient at St Saviour’s hospital. They could not remember much about this apart from being happy to chat, that the person was nice, but they were not sure about its value to them. Another said their church had been helpful, and then several other people with dementia said that they were supported emotionally by their families, with comments including,
“My son’s a nurse, so I have him.” And,
“The missus does it all now.”
Others said they did not know what counselling or talking therapies were and would probably find it difficult talking to someone they did not know.
Three carers said they had accessed some counselling via Talking Therapies, The Listening Lounge, and the Hospice, all saying this was helpful and a positive experience for them.
One person added to this saying,
“Everyone gets so upset by so much of all this, everything changes, and it’s difficult to get your head around all this but talking helps.”
Recommendations for change
- Given that most people said they felt quite distressed following their own or a relative’s dementia diagnosis, LEAN recommend that all people diagnosed with dementia and family carers should be offered immediate access to a therapist for emotional, psychological or counselling support.
- They also recommend contact information should be provided for appropriate therapy services with open access and self-referrals for the future.
- LEAN attendees biggest emotional and practical challenges
Before we finished the LEAN meetings, we asked attendees to tell us about their biggest emotional and practical challenges. This was to enable us to understand what was most challenging for people and to then ensure, as far as possible, that services were being constructed around these expressed challenges.
Most people with dementia said that they found speaking to people outside their immediate family difficult because they felt this could expose their condition and distance others from them. Comments included the following,
“I just don’t want to be written off.”
“The worst is when you come across something you’ve always done and now you can’t do it.”
“I don’t know which way to go and what will happen.”
“Socially, the forgetfulness is the worst. If you are unsure you don’t want to talk.”
“I feel stupid. I don’t want to be rejected.”
“When you see other people doing your job that you had to hand over, that’s a big challenge.”
“Knowing it’s going to get worse, that worries me.”
“I know I’m not, but I feel like I’m the only one with this blinking problem which means that sometimes people don’t seem to know how to talk to me.”
“It’s feeling angry and guilty about this dementia that’s impacting my whole family.”
Carers were mostly concerned about their own ability to continue to provide the care the person with dementia needed. They also said that the cost of professional care was worrying, and they worried because professional carers did not always provide the care that was really needed. One person summarised this by saying,
“The cost of care is terrifying, and what’s offered isn’t what they really need anyway.” Others spoke of feeling,
“Traumatised by the diagnosis” and,
“Adrift and needing a hand that’s not really there”.
.
Recommendations for change
- People with dementia recommended that the public should be better informed about dementia so that it would be easier for them to talk about it.
- Other people with dementia said that because The Meeting Place Project “Opens you up”, this should be available to everyone with dementia.
- Carers said that professionals working with people with dementia should be better informed about the practical and emotional challenges carers experienced so that appropriate support services could be provided for them.
- People with dementia and carers both said that what helped them most was being able to talk about things and people listening to their worries and concerns. They therefore recommend everyone, including family, friends and professionals, just listen.
Dementia Jersey – June 2026