Dementia Support Line
Lived Experience Advisory Panel Report for September 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 September 2024
In September the Lived Experience Advisory Panel members were asked to share their experiences related to the support and care they have received. We were interested to hear the experiences of people diagnosed with 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 44 people attended the LEAP meetings in September, including 31 people with a diagnosis of dementia and 13 supporters or carers of a person with dementia.
All information provided below has been anonymised.
A summary of the discussions during LEAP meetings in September 2024
1. Experiences of support and care generally
When the panel were asked if they felt that they had received the support and care they needed, almost all panel members with dementia and most carers said that they did feel supported. However, many wanted to make a distinction between the words ‘support’ and ‘care’, with most carers saying they did not feel ‘cared for’ but did feel ‘supported’.
One person with dementia did however disagree with this general feeling saying,
“I don’t just feel supported, I feel really cared for.”
Some also developed this initial conversation adding that while they themselves could say they felt supported, they were concerned for others who may not be able to actively seek support, or did not know that any support was available, or that they would really benefit from being supported in their caring role.
There was also considerable agreement that telling other people, particularly family and friends about the diagnosis meant that others were in a much better position to be able to offer help and support. While most said this was obvious, some said that they had initially been reluctant to do so because of the stigma they still felt existed for people with dementia.
A carer said,
“Telling them, that was what made the difference, and this meant that I could ask for help, and they would understand.”
A person with dementia said,
“It works like a dream 9 times out of 10. I say I have dementia, and they make allowances, and they are OK with that.”
2. Positive experiences of support and care
Most panel members were very happy to speak of their positive experiences.
Dementia Jersey
Positive experiences were wide ranging with particular reference made to the support panel members had received from Dementia Jersey. Many mentioned the Meeting Place Project (MPP), the activities they attended, the Dementia Advice and Counselling services, and the training provided by the Dementia Information Program.
One person with dementia said,
“It’s just coming here (MPP) that’s good for you, and getting out, that’s good for you too.”
Another said,
“I was taking a back seat before and now I’m not. I was losing my bearings before and now I’m not, and it’s absolutely because people are in the same situation here.”
A carer said,
“Dementia Jersey has been a lifeline to me and my partner.”
And another carer said, when first contacting Dementia Jersey,
“I had no idea about the effort that was quietly going on behind the scenes by them (Dementia Jersey).”
Memory Assessment Service
Other sources of support mentioned by the panel members included the post diagnostic course for carers and the cognitive stimulation therapy courses provided by the Memory Assessment Service (MAS). Panel members found these to be a helpful means of meeting others for mutual support who were in similar positions and with similar diagnoses to themselves.
One person with dementia said,
“These (sessions at MAS) were always cheery and happy, and we were all in the same boat really.”
Sunflower lanyards
Panel members also talked at length about the benefits of using a sunflower lanyard when out and about and particularly when travelling, siting this as a significant way in which they felt supported. They did however feel that there were probably many more people with hidden disabilities who might benefit from the scheme, and that although most service providers seemed aware of the purpose of the lanyards, some still did not.
A carer said,
“Now we don’t go anywhere without X wearing his. It’s a godsend.”
Community support
Panel members also said that they generally found people in Jersey to be helpful, with some suggesting that this had something to do with the community being respectful of older people.
One carer said,
“Because of your age, I think people are helpful and you rarely find someone who is unhelpful.”
Other health professionals
Panel members did not voice much about their experiences of support or care from professionals other than from GPs and the MAS. One person with dementia did however share at length about the positive support they had received.
Of this support they said,
“I don’t know who it was, I don’t remember their name, but they came to the house, and they were kind, and I did feel supported because they were there, and they listened.”
Family support
Many panel members, both people with dementia and carers, said that their families had been a significant source of practical and emotional support.
These are some of the things they said,
“They help me with the finances. I can’t do this now but I do have some cash so I can buy what I need.”
“I am confident with the family I have.”
“I’m lucky, my daughters care about me.”
“I have family I can talk to, so I have peace of mind.”
“It’s my family. My wife is my carer whether I like it or not – but I’d be lost without her!”
Parish support teams
A few panel members were also keen to share their experiences of the support they had received from their parish support teams. This led to a more general discussion in which most panel members agreed that some parishes offered more active support teams than others. The panel offered suggestions of services that every parish could provide to help support and care for their parishioners. These recommendations are in the section below.
One carer said,
“We are fortunate, we have a good parish, and everyone seems helpful.
3. Negative experiences – of not being supported or cared for when this would have been welcome or needed
Although most people said that they mostly had the support and care they needed, some did speak of more negative experiences.
GPs
Most said that the time in between first seeing their GPs with their concerns and then having an assessment appointment was very difficult. This was because they were not offered any support, and there seemed to be none they could find at a time when they were experiencing troubling and worrying symptoms and had no diagnosis to explain these.
One person with dementia said,
“I felt left behind.”
A carer added that,
“There was nothing we could do except wait.”
While most panel members said they felt their GPs had a good understanding of their situation and symptoms they experienced due to dementia, some said they felt their GPs were not as knowledgeable or as helpful as they hoped and expected them to be. Some also had experienced problems when they could not see the same GP each time and found that they had to repeat themselves at each visit. Others said they had to wait longer than they wanted to see the GP of their choice who knew them and their situations better. The panel members’ recommendations for GPs are in the recommendations section below.
Shops and shopping
Some panel members shared their experiences of shopping, particularly in supermarkets, and talked of the problems they had when using the self-service tills. Both people with dementia and carers said they found these too complicated to use, they found that they often made mistakes with these and were worried that the growing trend for these to replace people serving at tills to be worrying for the future. They felt that because of this, shops were not supporting their customers as they should.
A carer said,
“They don’t speed things up if you make mistakes. Yes, I am worried if I have no alternative but to use these.”
Memory Assessment Service
Although LEAP members who had attended the post-diagnostic course and the cognitive stimulation therapy course at MAS said these were helpful, most said that once they had finished these courses they felt anxious and without the support they needed when discharged from the MAS.
A person with dementia said,
“After the course finished I was left on my own.”
And a carer said,
“After the course (at MAS), I didn’t know who to turn to and it was like a death knell was ringing.”
Hospital
Sadly, not many of the panel members who had spent time in hospital said they felt they, or their relative with dementia, had received the care and support they needed. They said that the staff were mostly kind, but many did not have time to meet their patients’ needs and some appeared not to have the experience or skills they needed to care for people with dementia. Panel members’ experiences of being in hospital were mostly negative.
A person with dementia said,
“When I was in hospital, I was moved around 6 times and it was so noisy. I find things difficult a lot of the time.”
4. Care and support into the future
We were interested to hear how the panel felt about the care and support they may want or need in the future and how confident they felt about the availability of this.
It was interesting to note that almost all panel members said they tried not to concern themselves much about the future and actively tried not to think about it. Most said this was because they were more concerned about their present circumstances and living as well as possible in each day as it came. Some carers alluded to the future potentially bringing new challenges they preferred not to think about if they could avoid doing so.
Concerning this, one panel member said,
“Each day has its own worries, and this is enough. It’s a clique, but it’s true.”
Panel members’ recommendations concerning support and care for people with dementia and carers
1. Recommendation – Raising awareness generally
Most panel members recommend that measures should be taken to increase public awareness of dementia as this would mean that people would be more likely to receive the help and support they needed in all situations.
2. Recommendation – for GPs
Because most people had first raised their concerns with their GPs, who had then referred them to the MAS, the panel recommend that GPs should refer their patients to Dementia Jersey’s Dementia Advice service. This would give them access to the advice they might need to manage troubling symptoms, and the information they may need about other services and benefits available to them (with or without a diagnosis of dementia).
LEAP also recommend that each practice should consider appointing a dementia specialist practitioner with specialist knowledge of the symptoms of dementia, the needs of family carers, and of other services available to support and care for people with dementia.
3. Recommendation – Support following a diagnosis
Because most LEAP members have experienced times when they have not known who to contact for the help and support they need, they therefore recommend access to a 24/7 helpline or hub for information and advice.
4. Recommendation – Referral to Dementia Jersey
All LEAP members said they have benefitted from the support they have received from Dementia Jersey so recommend that everyone being discharged from the MAS with a diagnosis of dementia and their families should be referred to (not just signposted to) Dementia Jersey.
5. Recommendation – Access to a course for carers
Although not directly ‘support’, many carers who had accessed the post diagnostic course at the Memory Assessment Service, or Dementia Jersey’s Dementia Information Program (DIP) course, said these were very helpful and the content helped support them through the difficulties they experienced. They recommend that everyone should be encouraged to attend one of these.
6. Recommendation – Access to a course for people with dementia
Because many people with dementia said they felt they did not know enough about their diagnosis, they recommend that everyone with dementia has access to a bespoke course with content to inform them and to direct them to the sources of support they may need.
7. Recommendation – respite breaks for carers
Most carers said that one of the most helpful forms of support for them was getting a break from their caring roles in the form of longer-term respite.
Carers recommended the provision of more day care options and longer times for each session so that they felt they had time for a rest themselves without having to clock watch. They also recommend that other forms of respite should be available at short notice and to be able to book this in advance, including respite care at home and in care homes that could meet a range of needs, including care for people with mild symptoms, but who still could not be left at home alone for any length of time while their family carer was away.
Many also added that the cost of community-based care was so high this prevented them for being able to access the support they needed to continue to provide the care they aspired to provide. They therefore recommend a review of the financing of community-based care more generally.
8. Recommendation – sunflower lanyards
Because of the benefits so many panel members have experienced when using a sunflower lanyard, they recommend that this scheme is promoted further, both to inform service providers, and to inform people with hidden disabilities of the scheme.
One panel member also suggested, light-heartedly, that because this scheme was so good, an improvement of this could be for them to be tattooed with a sunflower, so that they did not have to remember to wear their lanyard each time they went out. Others nodded in agreement with this suggestion!
9. Recommendation – for shops
LEAP recommend that shops, particularly supermarkets, do not move to self-service tills only as these are too complicated for many people to use, not only people with dementia, but also for people with other disabilities and those not familiar with using information on screens.
10. Recommendation – Parish halls
Because some panel members have benefitted from varied types of local, free support from their Parishes, LEAP recommend all Parishes consider providing the following types of support including; a ‘buddy’ care scheme, call and check phone calls especially for people living alone and for the elderly and people with known disabilities, lifts to hospital and GP appointments, light household chores, rubbish disposal, and gardening.
Dementia Jersey – September 2024