LEAN, March 2026

Lived Experience Advisory Network Report for March 2026

About Dementia Jersey’s Lived Experience Advisory Network (LEAN)

LEAN is a network of 7 groups, including groups for people diagnosed with dementia and other groups for the family and friends of people with dementia.

The 7 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 March 2026

Our LEAN meetings in March had a different focus. With the elections of our new politicians in Jersey looming, people attending LEAN were given the opportunity to voice their concerns and state what they would like candidates to prioritize if elected.

A summary of the discussions can be found below, including a section with people’s priorities and actions for the prospective and elected politicians.

A total of 62 people contributed to these LEAN discussions in March

LEAN attendees’ priorities for prospective and elected politicians

1. Transport

Many people spoke about their current and possible future difficulties with getting out and about, particularly if they or the main driver were no longer able to drive.

They spoke of missed friendships, losing social connections with groups of which they have formerly been a part, and some had missed appointments at the hospital or the outpatient department at Les Quennevais.

Most people with dementia said that they relied upon family members to take them to their hospital and GP appointments and other necessary activities.

Priorities and actions– LEAN want politicians to prioritize transport so that no one in Jersey is prevented from attending appointments or is unable to engage in social activities that support their wellbeing and connection with others.

 LEAN recommend,

• extensions to bus routes
• investment in the parish support teams particularly for lifts
• subsidized taxis for people with disabilities including dementia
• the hospital transport service to be extended beyond its current very limited access criteria.

2. Knowledge about dementia and its symptoms

LEAN attendees were concerned that if politicians do not know about dementia, its symptoms, and about people’s varied care needs, they would not be able to discuss or make decisions on issues related to dementia, and the care of people with dementia.

People attending LEAN were concerned that politicians may not know that dementia is so common, that it is the leading cause of death in women, and may not know about the costs of care for individuals nor about the long-term care scheme and the current and future costs of care for individuals and the health budget.

One person said, “They (the politicians) are so busy, I think we are at the bottom of their lists”, to which there was then much agreement.

Another said, “If they or a family member get it (dementia) they will find out pretty quickly what they don’t know and what isn’t there to help people.”

Priorities and actions – LEAN believe it is essential that not only the Health Minister and   their Deputies, but all Jersey politicians are knowledgeable about dementia, its symptoms, the care services. and the costs of care.

 They want the politicians to,

• Engage with people with dementia and their families to fully understand the impact of dementia on so many people, families, our communities and our health service
• Attend a Dementia Jersey Dementia Awareness session
• Attend the short course The Dementia Information Program (if they meet the criteria for this)
• Read all the LEAN reports on Dementia Jersey’s website.

3. The costs to the health service and the Long-Term Care Scheme

Because most people are not aware of the complexities and limitations of the Long-Term Care Scheme until they need to use it, LEAN is concerned that Jersey politicians are also unlikely to know about it, while making decisions concerning the provision and financing of such care by the public purse and individuals.

Priorities and actions -given the complexities of the Long-Term Care Scheme and that people with dementia often require professional care over many years,

LEAN want Jersey politicians to,

• fully understand the long-term care scheme, its benefits, complexities and the need for help to navigate this
• understand its limitations
• appreciate the disproportionate financial burden and total costs for people with dementia, given care is often required over many years.

4. Powers of Attorney (LPA)

Many people attending LEAN said they had not been aware of the value of having an LPA in place until it was too late for their relative to set one up due to their loss of capacity. Those who had set up LPAs spoke of the comfort they found in knowing who would make decisions for them if they could not do so themselves in the future. They were also helped by knowing that they had made their wishes clear about the treatment and care they wanted and did not want if they became unable to express their wishes for this in the future. Those who had used the government LPA facility spoke highly of the ease of doing this and the minimal costs. One person said, “You think this would never happen, but it can, any time, even if you are young.” Another said. “It was too late for (name) and we didn’t really know what he wanted and who he would want to help him.”

Priorities and actions – Because of the benefits of having a LPAs, LEAN want Jersey politicians to,

• ensure all adult members of the public are aware of the benefits of having LPAs via public health promotions
• promote the government online facility for making an LPA so that people are not put off from doing so due to the high fees charged by lawyers.

5. The effect of dementia on families

LEAN attendees were concerned that our politicians do not understand the toll caring for a person with dementia can take and particularly the impact on family carers, and its related social and economic impacts. One person summarised this by saying, “It’s easier to brush us under the carpet.”

Priorities and actions – LEAN want politicians to acknowledge the burden many carers carry and to pledge to support carers by,

• reviewing the financial support available to carers, particularly for those who would choose to leave employment to care for a relative if there was less of a financial impact for them
• increasing the practical support available for family carers
• increasing the availability of emotional support for family carers
• providing more places and extending the times available at day-care centres so family members can continue working or have some respite from their caring role
• extending day care services to include provision for people with more complex needs
• providing respite services in care homes or in people’s own homes so that families can have a break away or a holiday.

6. GPs

LEAN attendees were concerned that many GPs do not seem to understand dementia and its array of symptoms nor the effect this has on the whole family. This meant that many people expressing concerns that they or a family member may have dementia, were not actioned by the GP, and it was only after several appointments they were referred to the Memory Assessment Service (MAS). They were also concerned that many GPs are not familiar with care options and costs, nor about the range of other services in Jersey, including those provided by Dementia Jersey, that may benefit their patients and their families.

Priorities and actions – LEAN want the politicians,

• to ensure that all GPs and practice staff have a good knowledge of dementia and its varied symptoms and have mandatory training
• because people with dementia usually need to see GPs more often and may need to book double appointments, incurring increased costs, they want politicians to consider subsidies for people with long-term complex conditions like dementia.

7. Memory Assessment Service (MAS)

People attending LEAN all spoke of the long wait for an appointment at the MAS and how difficult it was not being able to access the help they needed while waiting for an assessment appointment. This delay for most people was often for many months. They then spoke of how difficult it was following a diagnosis to be discharged from the service, having been diagnosed with a progressive terminal condition with no on-going specialist support or follow-up.

Priorities and actions – LEAN made the following recommendations for changes to services for people with dementia in Jersey, which they want elected members to make happen.

These include,

• increased finance for the MAS so that people can be assessed more quickly
• develop new services with specialists who can provide the on-going support and help that people with dementia and their families need.

8. Social Work in Jersey

Many people’s experience of Social Workers was not positive. They said that they were often unaware of the symptoms of dementia and how well people can present, which then affects the assessments of care needs they do, often under-estimating the extent of a person’s needs. Many also said that new Social Workers, particularly those from the UK did not understand our health and care services here in Jersey, nor the Long-Term Care Scheme and had given people wrong information that negatively affected their care options and finances. Many also said that they had not felt supported once discharged from the MAS and did not have access to a Social Worker or other Care Co-ordinator.

              Priorities and actions – LEAN members want politicians to help action the following,

• take measures to ensure that Social Workers are appropriately trained and for those who have previously worked in the UK to ensure that mandatory training is provided so that new staff understand the differences in our laws, our health and care services, and the differences in the funding mechanisms for these services in Jersey
• to ensure that everyone diagnosed with a long-term condition such as dementia have access to a Social Worker or other Care Co-ordinator
• to ensure that people who do not have family support in Jersey have an allocated advocate or support worker for informal visits to help maintain some social connection and to advocate on their behalf.

9. Role of the parishes

Some people attending LEAN spoke highly of the services provided by their parishes, but others were unaware that parish help might be available, or they lived in parishes where they knew there was very limited assistance. There was then some discussion about what people believed to be a ‘post-code lottery’ concerning the help parishes would offer.

Priorities and actions – LEAN members said it was not acceptable that some parishes were providing more support than others. They therefore want Connétables and Deputies to,

• work together to standardise the services they provide for islanders
• understand the needs of people with dementia and host Dementia Jersey’s Dementia Awareness sessions for all parish officials and parishioners
• to establish some central funding for all parish community support groups so that there is less reliance on fund-raising and volunteers.

10. Provision of domiciliary and residential care

Most LEAN attendees had experienced difficulties sourcing appropriate domiciliary and residential care. They had not been able to get the hours of care they needed at home, and many had not had any choice of care home at the time this was needed. Some had also experienced extended and unnecessary stays in hospital when they had been fit to be discharged because the appropriate care was not available at home or in a care home. This was particularly the case for people with complex needs associated with dementia. One LEAN attendee said, “We are getting older, there are more of us elderly people and they should be looking after us.” People attending LEAN had mixed experiences of the quality of care, some of which they considered to be very poor, making particular reference to the apparent lack of dementia specific training for staff.

Priorities and actions – LEAN want all politicians to ensure there are changes in domiciliary and residential care to address the issues they have experienced related to care.

They ask for,

• an increase in the availability of both domiciliary and residential care to ensure provision and choice
• Health and Care Jersey to be the provider of care services so Jersey is not reliant on private businesses and their funding models for people with medical and social care conditions requiring such specialist care
• politicians to visit care homes and consider if they would be happy for their mum or dad to be cared for in these
• better mandatory training for all staff working with people with dementia.

11. Care for people with dementia in hospital

Many people attending LEAN expressed concerns that some of the staff (including, doctors, nurses, care assistant and others serving meals etc.) at the hospital appeared not to understand the range of symptoms people with dementia might have and the extra challenges of being in hospital. Some said that they had needed to provide basic support and care for their relatives because there were insufficient staff. These concerns related to all departments of the hospital. Others added that the waiting times to see some doctors was too long, which then sometimes resulted in emergency admissions to hospital which were particularly distressing for people with dementia.

Priorities and actions – LEAN want politicians to ensure that the following changes are actioned, both for our current hospital and for the new hospital, including,

• a dementia specialist member of staff to be present in all departments and wards
• options for in-patient care in single rooms or wards, to best meet people’s needs
• adequate staffing so that relatives do not feel they have to provide necessary support and care
• mandatory dementia specific training for all staff
• more staff to be recruited so that people do not have to wait so long to see a doctor and poorer outcomes are prevented.

12. Hospice care for people with dementia

Many people attending LEAN spoke highly of the care provided by the hospice and thought that more people with dementia should have access to this care. They added that the hospice should not have to rely on fund-raising and charitable donations for the extensive work that it does. They said that this was an essential island service for people with life limiting conditions including dementia and approaching the end of their life. One person said, “They (politicians) need to look after the hospice.” to which there was then much agreement.

Priorities and actions – As many people attending LEAN had family members who had benefitted from being cared for at the hospice, they want politicians to,

• ensure the hospice is adequately funded for its current work and not reliant on fund-raising and donations
• ensure that the hospice is able to extend its services so more people can benefit from this essential island service for very sick people.

13. Dementia Jersey

As for the hospice, many LEAN attendees spoke highly of Dementia Jersey and said that because it was an essential lifeline for people with dementia and their families, it should not have to rely on fund-raising and charitable donations to fund its work. It was described as, “An essential island support and care service for people with one of the most debilitating health conditions imaginable.”

Priorities and actions – LEAN want politicians to,

• commit to supporting the essential work of Dementia Jersey
• commit to risk reduction and brain health campaigns so that fewer people experience dementia
• fund Dementia Jersey’s work appropriately as a provider of an essential health service
• visit Dementia Jersey offices and attend some of the carer support groups, the Meeting Place Projects and activities to see the essential work that is done by the staff and volunteers
• listen to the experiences of people with dementia and their families in Jersey and to appreciate the limitations of our current Health and Care Services
• attend a Dementia Information Program (DIP) training course (if appropriate criteria for attendance are met) to gain an all-round understanding of the range of symptoms and difficulties for people with dementia and their families

General comments and recommendations from LEAN

• “Please get on and build our new hospital. Don’t waste another £200m.” 

• “Tell me how our island will be better if I vote for you and not another person.” 

• “Stop changing roads in town. No more one-way changes and make zebra crossings  traffic light controlled to keep traffic moving.”

• “Please listen to the people and their interests. Don’t represent yourself and your personal self-interests.”

• “Can’t we have an Older People’s Commissioner, like we have a Children’s Commissioner, or a Minister for Older People? We need someone to listen to and support older people.” 

• “Find out how much is really done by volunteers and what the true costs are for health.”

• “Why do we spend so much time and money on changes to the electoral system? It would be better to concentrate on health or education.”

• “We need to know what qualifications they (candidates for election) have for the job (politics) and why they think they would be good at it.”

 

• Dementia Jersey – March 2026