Dementia Support Line
Lived Experience Advisory Panel Report for June 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.
Email: info@dementia.je
Call: 723519
Overview of the LEAP meetings held in June 2024
In June the Lived Experience Advisory Panel members were asked to share their experiences related to getting a diagnosis of dementia. This included people’s experiences around the time symptoms were first noticed, visits to the GP, medical tests, appointments at the Memory Assessment Service and follow up appointments, information they were given, referrals to other health services and about any support options that were offered. We were interested to hear the experiences of people who now have a diagnosis of dementia and from family carers.
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 33 people attended the LEAP meetings in June, including 24 people with a diagnosis of dementia and 9 supporters or carers of a person with dementia.
All information provided below has been anonymised.
A summary of the discussions during LEAP meetings in June 2024.
-
- Experiences pre-diagnosis
Almost all panel members with dementia said that it was either a family member or friend’s concerns that prompted an initial visit to a GP. Although some people said that they had noticed changes in themselves, they said they would not have acted on their own concerns alone. Just one member with dementia said they themselves initiated this action.
One person with dementia said that initially they preferred to believe their symptoms were just them getting older, and others agreed with this, saying that just getting older carried less stigma than dementia.
Another person with dementia said,
“As far as I knew I’d just had a stroke, and this was not the same as dementia.”
One carer said,
“They would never admit that anything was wrong, but I just knew something was not right and they’ve never accepted it.”
There was general agreement that although there was still some stigma associated with dementia, this was less now than in the recent past which made it a bit easier to mention the word and raise the subject. Some panel members said they thought this was because there was more in the media about dementia, but most said that more needed to be done in terms of raising public awareness.
One carer said,
“It’s better now we all know more, but it’s not enough, we need more people to realise what this is.”
- Experiences when visiting the GP
All panel members said that they knew that they should speak with their GP given their symptoms or their relative’s symptoms, but most said they delayed for some time before making an appointment.
One person with dementia said,
“My daughter said, ‘For God’s sake mum, something’s not right’ so we went off to the doctors.”
A carer said,
“Without me x never would have gone. What happens to people who don’t have someone else to make it happen?”
Panel members were also keen to discuss GP’s dementia specific training and knowledge. Some panel members said they thought their GP seemed very knowledgeable and approached the subject sympathetically. Others thought their GP did not recognise obvious symptoms that something was wrong, and initially dismissed their concerns and did not follow them up when they believed they should have done so. Some panel members said they needed to go back a few times to raise their concerns before the GP arranged to follow up on their concerns.
- Experiences of tests and investigations
Most panel members said that they had very little previous knowledge about the health services and systems with which they have since needed to engage. They said that having some idea of what to expect about the tests and investigations and about the services they were likely to be engaging with would have been helpful.
- Experiences of waiting for an assessment
All panel members said they or their relative had to wait too long for an assessment appointment and that during this time they had little or no support or advice concerning symptom management and other related issues. Carers said that they felt stressed a lot of the time and some said that their own health had suffered. Carers also said their family member’s general health and dementia symptoms had worsened significantly during this time.
- Experiences of the Memory Assessment Service
All but one panel member received the diagnosis from the Memory Assessment Service. The other person was diagnosed at a private clinic in London.
Most people said that their experience of the Memory Assessment Service was mixed. They said the staff were helpful but most agreed that their overriding experience was negative. This was not only because of the diagnosis itself but was also because people said they felt alone with a condition they did not understand with an unknown future.
The following are comments from people with dementia.
“The doctor was kind and the other people were too when they told me what I had.”
“When the doctor said I was discharged, all I thought was, don’t leave me.”
“It was really bad when the doctor said that there was nothing else they could do for me and they didn’t want to see me again.”
“I just thought, what now?”
“I wasn’t told and I still don’t know what structure will look after me. I don’t know.”
A carer said,
“It would have been good to have known the system.”
It was interesting to note that there was general agreement amongst those who had seen their brain scan images that this helped them to come to terms with the diagnosis. However, one person said when seeing their scan,
“That was pure shock. I said to them, ‘That’s a pea, it’s not a brain’, I was so shocked.”
- Experiences immediately following a diagnosis – practical changes
Several panel members with dementia said that although they felt less inclined to do things following a diagnosis, they now appreciate the encouragement they have had from others to keep up with former activities and relationships and to take on new activities including the Meeting Place Project.
People with dementia said,
“This (the Meeting Place Project) has helped me maintain more memory rather than what I thought I would do which was to sit around and just fade away.”
“It would be so much worse without Dementia Jersey.”
“The post diagnostic group (at the Memory Assessment Service) was good. Yes, that was helpful.”
“The first time I travelled after the diagnosis they put me in a wheelchair because I needed ‘extra assistance’. At that point my whole life changed.”
- Experiences immediately following a diagnosis – feelings
Most panel members with dementia said that they resisted accepting their diagnosis, but all agreed that it was better, and they were happier once they had accepted this.
One panel member told the meeting about the day they received their diagnosis and being told at the same time they had to surrender their driving licence.
They said,
“It felt like dementia takes everything away.”
Other people said,
“First thing I thought was I was going to jump off a cliff – but then someone actually visited!”
“I was relieved really because now I had and explanation for it all.”
“I just didn’t know what to do. I needed someone to talk to and I’ve found it does get better if you have this.”
“It was all shock. I knew something was wrong, but it was shocking to hear it.”
“You go out of that door, then nothing. You’re told to go back to your GP but they’re no help. There’s nothing.”
“When they tell you, you think, that can’t be happening to me. God almighty!”
- Positive experiences
We asked if the panel would like to share any positive experiences around the time of diagnosis, and although the intended limit was to this time scale, several people wanted to go beyond the time of diagnosis to praise the services offered by Dementia Jersey more generally.
Positive comments included,
“Because of you people (Dementia Jersey), it’s a great relief.”
“This (The Meeting Place Project) makes you work harder at managing, so that’s good.”
“You (Dementia Jersey) are a lifeline.”
Some other people said that the team at the Memory Assessment Service had been sympathetic and were understanding that people would be struggling with the diagnosis.
Panel members’ recommendations for improving people’s experiences around the time of a diagnosis
- Recommendation – Raising awareness generally
Panel members recommend that the public are better informed about dementia and that a clear distinction is made between just getting older and dementia so that people recognise the symptoms and therefore might seek help sooner. They also said that this would help reduce the stigma of dementia and unhelpful stereotypes. They suggested public health information films, greater access to awareness sessions for the public, and letter box leaflet drops.
- Recommendations for GPs
Because of people’s reluctance to seek medical advice many panel members recommended that GPs should screen for dementia by discussing issues related to brain health and memory problems in routine appointments. By so doing the panel said this would help people get further assessments in a timely manner that did not depend upon people taking the initiative to speak with their GPs.
Panel members also recommend that GPs arrange some time to speak privately with family members, so they have the opportunity to share their concerns without the person being present.
- Recommendation – Reducing waiting times
Because of the distress so many experienced in the time between first raising concerns and appointments at the Memory Assessment Service, panel members recommend this time should be reduced significantly.
- Recommendation – Support for everyone waiting for an assessment
Because many panel members said they felt they had no one to help them understand their symptoms and how to manage these, and did not know what services may be available to them, nor often understood what tests had been arranged for them, they recommend that everyone waiting for an assessment is given access to an advisor who can provide, support, information and who can direct people to the other sources of help they may need.
- Recommendation – Support following a diagnosis
Following a diagnosis all panel members agreed that it was important that people had regular on-going support with scheduled review appointments and a single point of contact to self-refer for support and advice when needed.
The discussion then took an interesting turn when one member said they thought dementia services should be like those people received in pregnancy and following the birth of a baby and for several years after. When this was explained in more detail all panel members felt this was a useful model for what should happen. This would include support and health checks pre-diagnosis (before the birth) intensive support at the point of diagnosis (the delivery of the baby) and then frequent visits from the community mental health team (midwife and health visitors). Children also have planned assessments at certain milestones which the panel said they believed would be helpful for people with dementia and their families so that no one would fall under the radar or rely on people to be able to recognise their own need and to have to self-refer. They said this would be proactive and not reactionary in response to crises.
All panel members recommended that as part of the discussions following a diagnosis, people had the system and services explained to them clearly and the roles of the various professionals with whom they may have some contact in the future.
- Recommendation – Referral to Dementia Jersey
All panel members agreed that all patients should be referred to Dementia Jersey following a diagnosis and be given a date for an appointment, rather than people having to take the initiative to self-refer.