LEAP, May 2022

Lived Experience Advisory Panel (LEAP) Report for May 2022

Dementia Jersey’s Lived Experience Advisory Panel

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 monthly, proceeds with a formal agenda, 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 of discussion are broad and are submitted either by Panel members or 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 May 2022

In May the LEAP’s focus moved on to Dementia Jersey with Panel members being asked to share their lived experiences of Dementia Jersey’s services. This review included all the support, activities and events available for people with dementia and the services for supporters and carers.

The experiences of Panel members are summarised below as outcomes of the discussions, followed by a section with the Panel’s recommendations. A total of 25 people attended the LEAP meetings in May, including people with a diagnosis of dementia and supporters or carers of people with dementia.

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

Outcomes of the LEAP meetings held in May 2022

1. Expression of gratitude for services and activities: All Panel members stated that they were very grateful for all the services and activities provided by Dementia Jersey (DJ) and that the support had been of significant value, with one member saying, ‘Without the support of Dementia Jersey I would have totally floundered’. Another said, “You are doing a really great job. I don’t know how others manage without you!”
2. Carer Training Course: Some Panel members had previously attended DJ’s TIPSS (carer training course) which they said had been very helpful. Others who had not done this course said that they would appreciate this. One member commented, “These sessions were so reassuring and packed with useful information. Before these I was totally ignorant about how to respond to my partner, emotionally or physically, and just so scared of the whole thing about dementia. The course gave me confidence”. Others commented on how good the facilitator was and another said they appreciated these sessions for their informality and the opportunity to get to know others in similar situations.
3. Advocacy for people with dementia and their carers particularly during covid: Some Panel members, while appreciating the difficulty in doing so, strongly criticised DJ for not speaking out to the government of Jersey and politicians to advocate on their behalf during the covid pandemic. This was especially concerning the tight restrictions of lockdown when people with dementia were often separated for months from their families and sometimes died alone. One Panel member talked of the “Heavy, powerful weight of guilt and remorse” they felt for not being with their partner in the last few weeks of their life.
4. Informing service provision: The Panel were equally split on this subject with some members saying they felt that DJ had provided its services and activities in response to their needs and wishes, while others said that, although they benefitted a lot from the charity, they did not feel they had been asked to comment on any provisions or planned new services.
5. Signposting: The Panel all agreed that in their experiences, DJ had good knowledge of other sources of appropriate help and signposted to these appropriately. Several mentioned how pleased they were to have been signposted to the St John’s Ambulance first aid course.
6. Government provision of support for people with dementia and carers: Most Panel members agreed that there was no support for them following the diagnosis, with one Panel member saying he felt that the health services were saying, “That’s it, now over to the charity”. Another said, “Following the diagnosis there was just a huge void. There was nothing.” And another, “If Dementia Jersey was not doing what they do, I don’t know what people would do”.
7. Coffee and Chat groups: All Panel members who attended these remarked at how beneficial they were; that staff and volunteers were always kind and helpful.
8. All activities and events: All Panel members who attended these remarked at how beneficial they were; that staff and volunteers were always kind and helpful. One member commented that, “If I did not have these things to come along to, I can’t imagine how alone I would feel”. Another said, “I’m sure that it’s these things that get us up in the morning.” The Panel suggested a range of further activities that they would like DJ to consider (these are shown in the ‘Recommendations’ section below). There was some criticism about the location for the walking group, including difficulty with parking and noisy building work which made the walking groups, at that time, difficult for some people with dementia, particularly for those still driving themselves.
9. Carer Support Groups: All Panel members who attended these remarked at how beneficial they were for emotional support and forums for sharing practical advice, and that these continued to be so when the person with dementia moved to a care home. Panel members agreed that it was often difficult to speak to other family members about the things that troubled them, but it was easier to talk with others in a similar position.
10. Dementia Jersey Office: All Panel members who had visited the DJ office found this to be a warm, welcoming place. Some commented that although it was not too far from Minden Place car park, they said that the lack of parking was a huge disadvantage to them and would be to others, and that knowing that DJ was considering relocating, they urged them to ensure that it had designated parking. Members also said that they found its open aspect helpful and welcoming.
11. Getting to know each other’s names: The Panel found the provision of name badges to be very useful for helping them learn each others’ names more easily and would like these to be available for all activities.
12. Information about activities and events: While the online calendar was useful for some, other Panel members found this format difficult to read and access and felt it did not contain enough information which they then had to look for elsewhere.

Panel members’ recommendations concerning Dementia Jersey’s services, activities and events of people with dementia and their supporters and carers.

1. Increase public awareness: Because all Panel members said that the services and activities provided by DJ had been so helpful to them, they recommend finding strategies to help increase public awareness of the charity. Feature articles in the JEP, on the radio and television were suggested, along with information being available at Parish Halls.
2. Other health providers to refer to Dementia Jersey: Most Panel members said they had not been told of the support available to them from DJ. They therefore recommend that DJ make their services more widely known to all health professionals.
3. Carer training course: All Panel members recommended DJ prioritise the role-out of their planned updated carer course – likely to be called the Dementia Information Programme (DIP).
4. DJ to advocate for people with dementia and carers: The Panel call for DJ to consider listening and then advocating for their clients where issues arise, even if DJ itself takes a neutral position.
5. DJ to petition for the States to appoint a Commissioner for Older Adults (as for children): The Panel considered this would help provide a voice for all older adults.
6. Involvement of service users with service design: The Panel all agreed that best practice was for co-production and recommend that service users should be regularly asked to submit their recommendations for any new services in relation to their needs and to be asked to comment on any proposed changes or developments.
7. Signposting: Because all Panel members said they benefitted from knowing about other sources of support and help, they supported DJ’s planned production of a paper and online directory of these.
8. Increased States health service support for people with dementia and carers: All Panel members were of the opinion that charities should not be responsible for such essential health service provision and recommend this is reviewed, or that there is increased government funding for DJ to deliver these.
9. Accessibility and parking: All Panel members recommend that DJ, as a priority, chooses venues with adequate parking for their new offices and for all their activities and events.
10. Welcoming exterior: As all Panel members said that the open aspect of DJ’s office was an advantage, they recommend that any new premises is equally open with clear signage and entrance.
11. New activities: The Panel, while pleased with all that DJ offers, said that they would appreciate further activities including; golf, football, dancing classes, and second Fun and Games session, a day trip out on Le Petit Train with a coffee/meal at St Aubin, a movement to music exercise class, and further singing sessions. They would like DJ to facilitate Pets as Therapy (PAT) dogs to visit care homes and for groups of children from local schools too, possibly to sing, read poetry, dance or for conversation.
12. Wearing a name badge: As all Panel members found these to be helpful, it is the Panel’s recommendation that the wearing of these should be encouraged at all DJ meeting, activities and events.
13. DJ’s harbour walk: Panel members were in agreement that these were usually great opportunities for lovely walks, but with all the noisy building work at the harbour, they recommend that the routes should be changed to make these more suitable for people with dementia who may be troubled by the noise and traffic (consider previous locations i.e. Village Green at St Martin).
14. Paper copies of information about activities and events: Because some Panel members found it difficult to access and understand the information in the online calendar or found this difficult to explain to their relative with dementia, some suggested this also be available as a monthly A4 paper document. They suggest this being in date order, including a brief description of the activity or event, together with a tick box for those activities people would like to attend. While carers mostly managed well with the present system and for booking activities and events, all thought this would be a useful addition for some people.

Dementia Advisor Team – May 2022