Lived Experience Advisory Panel Report for March 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 quarterly, proceeds with an agreed subject for discussion, and because of its advisory purpose, the outcomes of 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 for discussion are submitted either by Panel members or from other interested parties via Dementia Jersey’s staff.

LEAP is headed up by our Dementia Advisor Team.

Please contact Dementia Jersey if you would like more information about our LEAP.


Call: 723519

Overview of the LEAP meetings held in March 2024

In March the Lived Experience Advisory Panel members were asked to share their experiences related to their awareness of and understanding about dementia. We were interested in knowing about this both before and after their own diagnosis, or the diagnosis of the person for whom they care. We were also interested to know what the panel thought about the public’s awareness of and understanding about 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 36 people attended the LEAP meetings in March, including 26 people with a diagnosis of dementia and 10 supporters or carers of a person with dementia.

All information provided below is anonymised and non-specific gender pronouns have been used.

Outcomes of the LEAP meetings held in March 2024.

  1. Panel members’ awareness and understanding pre-diagnosis

Almost all panel members, both people with dementia and carers, said that they knew very little about dementia and its symptoms before the diagnosis and had little awareness of it. One person commented,

“I just thought it was me getting older and this was what to expect at 80.”

The only exceptions were panel members who had previously had a family member with dementia and two others who had worked with people with dementia in the past. Even with such experiences, these panel members still ranked their awareness and knowledge as low, at around 2-3 in a score out of 10. Those with no previous family or work experience suggested scores of 0-2.

Other members said they were led to believe that their symptoms were not significant enough to warrant a referral to the Memory Assessment Service (MAS) when first discussing their concerns with their GP but would have appreciated knowing that the long wait for assessment appointments was at least part of the reason for not having been referred to a specialist. Because of this they felt that they were not aware of the possible significance and implications of their symptoms.

When panel members were referred for further assessment, some said that they had no access to any information to help them manage their symptoms while waiting.

One person said,

“Those 9 months felt like 9 years.”

  1. Panel members’ awareness and understanding since diagnosis

All panel members commented that their knowledge and understanding had increased since their own or another’s diagnosis, though the scores out of ten remained mostly under 5, with a few exceptions to this. Two people gave scores of 7 and two of 9. These panel members with the highest scores said they had learnt as much as they could about dementia to help them in their caring roles.

  1. Sources of new awareness and understanding

Panel members were unanimous in saying that Dementia Jersey was the most significant source of help, advice and information (and when this was discussed in the LEAP meeting for family carers, all clapped in agreement). The panel members expressed gratitude for the Dementia Advice team, the support of staff at various activities, the information in the Dementia Awareness sessions and Dementia Friends sessions, and panel members who attend the Meeting Place Project (a group for people with a recent diagnosis of dementia) said that this group had helped their understanding significantly.

One panel member commented,

“It would be so much worse without Dementia Jersey.”

Both people with dementia and carers also said that they had learnt a lot from other attendees at all these events and meetings and that this type of learning was extremely helpful to them.

Some said they knew more by reading information on Dementia Jersey’s website and those of other UK organisations.

Others said that listening to famous people talk about their diagnoses had helped, and others said that characters with dementia in television ‘soaps’ had also helped. Some panel members had watched the film ‘The Father’ which they had found insightful.

When asked directly if people’s doctors or other health and community staff had helped their understanding, only 2 people then said their GP had been helpful and one person mentioned the post diagnosis course at the MAS.

At this point, some people commented that they felt they had not received the information and support they needed from Health and Community Services (H&CS) nor were they signposted to Dementia Jersey, and that it was only by chance conversations they had found out about the assistance Dementia Jersey provides.

One panel member said regarding this that,

“We felt signed-off by the doctors, it was bad, we were shocked, and we just thought what now?”

Another said,

“I was shaking when I heard that word and was left with a scary image. I felt that image was all I had.”

Others nodded in agreement.

  1. Information about dementia panel members would have found helpful before and after diagnosis

All panel members were in agreement that it would have been helpful for them to have known more about the range of symptoms people with dementia could experience as this would have helped them recognise something was wrong sooner and for them to have sought a diagnosis sooner and got help sooner.

Some panel members also said that they did not feel they knew much about the process of assessment and that this was not explained to them initially nor as time progressed. They said that to have understood the process and the tests better would have been helpful.

Many panel members said they were fearful of dementia, largely because of the negative stereotypes, but also because they did not know much about it. Some said they had worried because they thought they would get dementia because a family member had it and would have appreciated being free of this burden of worry sooner by knowing few cases were directly genetic.

  1. Panel members’ opinions about the extent of the public’s awareness and understanding about dementia

Most panel members said that they believed the public’s awareness and understanding about dementia, although not good enough had improved in recent years. They said they thought this was due to well-known people speaking about this on the media and there being less stigma about dementia these days, as with mental health conditions.

The panel did however comment that there were not enough positive images of people living well with dementia on the media, though this was improving locally with Dementia Jersey’s activities being featured more these days. Panel members were in agreement that images of very old people in care homes either sitting alone or with uniformed staff assisting them, often using mobility aids, continued to promote unhelpful stereotypes.

There was general agreement with one person’s comment,

“The more awareness the better.”

And with another’s,

“People don’t know how to respond, but it would really help if they did.”

Following this some panel members developed a conversation about the use of the sunflower lanyards. While approximately half of all panel members were unaware of these, others who used them regularly said they had been helpful though they believed not enough was still known about this scheme.

The conversation then centred around the potential benefits of GPs regularly screening or checking their patient’s memory and cognitive function during routine well-man/woman health checks or when reviewing medication. Some panel members said that they would not have considered mentioning some of the earlier symptoms to their GPs as prior to their diagnosis they did not think the GP would be interested in what appeared to be minor memory lapses or what they thought was normal ageing. By GPs doing this the panel thought more people may know more about dementia and more people would be diagnosed at an earlier stage.

The subject of risk reduction and brain health was also raised. Many panel members did not know it was possible to reduce the risk of dementia and of any brain health messages. Others who did know some of this information said that they thought it was extremely important that the public knew about this so that we could reduce the incidence of it.

 Panel members’ recommendations concerning awareness and understanding

  1. Recommendation – Raising awareness generally: Panel members recommend that the public are better informed about dementia and that a clear distinction is made between normal ageing and the symptoms of dementia. They recommend this should include making information available via the media including more use of social media, information stands in public places, and via GP practices.
  1. Recommendation – Support and information while waiting for assessment and diagnosis: Most panel members said it would have been helpful to have had a point of contact for information, advice and support while having tests done and while waiting for an appointment at the MAS. The panel therefore recommend that anyone having assessment tests done and waiting for an appointment at MAS should have access to a service that could provide them with advice, information and support.
  1. Recommendation – Unhelpful stereotypes: The panel recommend a clear move away from unhelpful, limited stereotypes, often of very old people in care homes using mobility aids and with uniformed carers included in the images. They would instead like to see other images of people with dementia engaged in community activities or of people thriving and engaging with others in care settings.
  1. Recommendation – Dementia awareness, Dementia Friends and carer training courses: Because panel members who had accessed these sessions had found them helpful, they recommend that these are available to more people, by being promoted more broadly and possibly making more available.
  1. Recommendation – Health and Community staff to promote understanding and awareness: Although most panel members said they had had several appointments with various health professionals, very few of them had helped panel members improve their understanding of dementia. Because they considered opportunities were missed at these meetings to be given more information, or to be signposted to other sources of help including Dementia Jersey, they recommend that patients and families should be encouraged to ask questions, be given comprehensive information, and always signposted or referred directly to Dementia Jersey.
  1. Recommendation – GPs to screen for dementia: To facilitate public awareness and earlier diagnosis, the panel while appreciating there is no one definitive test for dementia, nevertheless recommend that GPs actively screen for dementia as they do for other conditions during regular check-ups. Some panel members recommended GPs use a brief assessment test, and/or raise the subject by asking their patients about their memory and cognitive function.
  1. Recommendation – Increasing public awareness of brain health and risk reduction: The panel flet very strongly that everyone should have the right to know that they can improve their brain health and reduce their risk of dementia. They therefore recommend that such information should be made available through multiple means, including by GPs, posters in medical centres and the hospital, public health films, articles in the paper, on the TV and radio.