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Strong FoundationsA dementia strategy for Jersey 2024-2028This short summary is wrien from Demena Jersey’s perspecve and provides a brief, high level review of the strategy. It’s wrien for people who perhaps don’t have the me to read the full strategy or prefer reading shorter plans. The full ocial strategy can be found on the Government website. Demena is now the fastest growing condion aecng islanders and with our ageing populaon, demena looks set to place an even greater burden on our families, healthcare system and economy. We are therefore delighted to have worked together with the Government of Jersey on the producon of the rst demena strategy for the island. It’s not too late to create a meaningful change in our approach in the way we tackle these challenges. Together, we’re commied to creang a brighter future —one where demena care is compassionate, eecve, and responsive to the needs of our community.IntroductionClaudine Snape, CEOA summary by Dementia Jersey

The Demena strategy has been produced by the Government of Jersey in partnership with Demena Jersey. Please nd it on the Government website. It includes a detailed overview of demena and its symptoms, its impacts across the world, analysis of the data we have in Jersey, an in-depth review of the services currently available for people with demena and their family carers, and feedback from the engagement sessions and surveys undertaken during the development this strategy. All this has all been drawn together to gain a clear understanding of the current impact of demena, projecons for the future, and has been used to direct the strategy’s priories for the next 5 years. The strategy was developed with oversight from a steering group which included a person with demena, family carers, members of the government from health and public health, representaves from Demena Jersey and partners from the independent care sector. Demena Jersey esmates there are around 1,600 people with demena in the island and we know that it touches the lives of thousands more people involved in their care. To enable us to understand the impacts of demena on people’s lives in Jersey we listened to the views of more than 550 people. They told us what they found helpful and what changes would make things beer for them. Our engagement sessions and surveys included the views of people with demena, their families and the professionals involved in their care and treatment, as well as members of the public. This is what they told us… Background 2Listening to feedback

Limited support optionsParcularly concerning was the limited availability of professional care for people living at home, in care homes and for respite and short breaks, which has clearly added to the distress and exhauson experienced by carers. At the me of the research in 2023 many agencies and care homes weren’t taking on newclients and there are no care homes registeredto provide nursing care for people with demena with complex needs. 3Limited understandingMost people told us that they did not know much about demena and its symptoms, and for some, what they did know seemed to be limited to stereotypes. It was also clear that most people did not know it was possible to reduce their risk of geng demena. Many people working in health and care sengs also told us that they did not have all the knowledge and skills they needed to support people with demena, and we found that most had not received demena specic training.ChallengesInsufficient information and follow up A consistent theme raised by people with demena and family carers was the trouble they experienced geng the right informaon at the right me. Some people, aer being discharged from the Memory Assessment Service following a diagnosis, described it as like ‘falling o a cli’ with no ongoingsupport. This was oen because they did not know what support might be available, or how to go about geng the support they needed, or because this was not available to them, even if it was included in their care plan. Many people were also unclear about the roles of professionals involved in their care, and who could help them with the various issues they faced.Long waiting timesThe waiting time from referral to a rst appointment at the Memory Assessment Service was between 30-33 weeks at the me of our research, though the naonal quality standards in England suggest this should be only 6 weeks from referral to diagnosis. Some people with demena also experienced very long delays in being discharged from hospital aer treatment, with 67% of ‘blocked beds’ in hospital being occupied by people with demena in the rst half of 2023. “It’s a journey in the dark for many of us.”(person with dementia)“They washed their hands and that’s how I felt.” (carer)“I’m actually so exhausted that if I don’t get a break at some me – I mean, I’m ill now anyway so I don’t know what’s gonna happen.” (carer)“Dementia isn’t something as an acute medical nurse that we actually look at.” (sta)“There was no follow up…I had really no other source of help. You just get on with it… whatever you can do…that’s it.” (carer)“There’s nowhere to go. He’s too bad to go to the day centre. They can’t accept him because he needs a one-to-one carer.” (carer)“My father spent the last 8 months of his life in hospital because no place was available for him in a care home. He nally moved into a home but died a few weeks later.” (carer)“People get stuck in hospital beds. It’s a dreadful situaon.” (carer)

4Ministerial supportThe Minister for Health and Social Services has been very supporve of the strategy and the acons needed to implement it. The commitment to support the development of Jersey’s rst Demena Strategy was included in the Government of Jersey’s Ministerial Plan (2022).Implementation plan and oversight group A full implementaon plan for year 1 has been published alongside the strategy, providing details of how each acon will be delivered. Acon owners have been idened together with expected mescales. A strategic oversight group has also been set up with authority and responsibility to monitor the progress of the commitments made in the strategy and implementaon plan.Goodwill of healthcare sta Despite the challenges outlined above, there were several sta who talked about the love they had for their work and how they wanted to make a dierence. They also told us they would value more quality demena specic training opportunies.Dementia Jersey’s expansion of services Demena Jersey has increased the support it provides to be able to help more people with demena and their families. In 2023 there were 1,500 more aendances across the range of services provided.Enablers for good outcomesOur shared vision for the strategy Our shared vision is of a truly demena friendly and inclusive island where people with demena can engage with and enjoy the things that maer to them and where sgma is a thing of the past.“When I am able to make someone smile, it makes me smile.” (sta) “You know Demena Jersey has helped me an awful lot – just by meeng other people who have gone through what I’m going through.” (carer)“Demena Jersey must connue to do its work. They do a great job .. and it’s been an absolute lifeline.” (carer)

5With the enablers we idened, we are condent that the ve key areas for improvement that have been idened in the Jersey Demena Strategy will be achieved.These 5 priories and key outcomes are as follows:Raising awareness Raising awareness will include raising people’s awareness of brain health, what they can do to reduce their risk of geng demena, spot symptoms and improving islander’s understanding of demena.As an islander: • I will know what I can do to reduce my risk of demena, and the acons I can take to stay healthy and support the health of my brain.• I will recognise the symptoms of demena and know where to go for informaon, advice, or assessment, for myself or others.Diagnosing well Improving diagnosis will include reducing waing mes for a memory assessment, increasing post diagnosc support and informaon. As an islander:• I will have access to a mely diagnosis in a place and way that considers any health challenges or restricons I may have.• I will be oered support and advice at the point of diagnosis to help me, and my family come to terms with my diagnosis and plan my next steps.• I will know where to seek help, informaon, and support, and who to talk to about how to access support services.The dementia strategy’s Five priorities Priority2Priority1

6Supporting people with dementia and their familiesImproving the quality and availability of support for people with demena will include more respite, day care opons, domiciliary and residenal care opons and more care, support and training for family carers.As a person with demena:• I will be treated with dignity and respect.• I will know what I can do to help myself, and who else can help me.• I will have the informaon and the support I need to enable me to make decisions and choices about my goals and my future.• I will receive considerate support, care, and treatment that is evidence-based, properly funded, and meets my needs, wherever I live.• I will know that my family and those who help me have the support they need.• I will be condent that my end-of-life wishes are respected.As a carer:• I will be recognised as an important partner in care.• I will have access to the informaon, advice and training I need for my care-giving role.• I will have my own emoonal, psychological, and social needs regularly assessed and supported.• I will feel condent that the care and support my relave receives is compassionate, person-centred, and safeguards their dignity.Priority3

7Supporting Jersey to become a dementia-friendly and inclusive islandSupporng Jersey to become a demena-friendly and inclusive island will mean developing iniaves to support people with demena to enable them to connue to engage with the groups, acvies, services and amenies that maer to them and help them live well. This will need wide collaboraon across government, businesses and the wider community to facilitate such signicant change. As an islander with demena: • I will feel condent that I will be supported to live in my own home for as long as possible.• I will feel safe, comfortable, valued, and connected with my friends, social networks, and my community.• I will feel included as part of society.• I will be able to live well and enjoy the things that are important to me, with accessible public services, acvies, buildings, and community spaces.Priority5Priority4Developing, valuing and supporting the workforceDeveloping, valuing and supporng our workforce will include iniaves that promote recruitment and retenon of the demena workforce, training in demena and an emphasis on sta wellbeing. As a person with demena:• I will feel condent that the people supporng and caring for me and my family are skilled and compassionate, and that they understand me, and the impact demena has on me. As a member of sta:• I will be supported by my employer to develop my knowledge, skills, and condence in supporng people with demena.• I will understand my role in supporng the rights and voice of people with demena, and the important role of carers. • I will know where I can go to access the emoonal and wellbeing support I need.• I will feel valued and supported within my team and organisaon.

Telephone: 01534 723519Email: info@dementia.jeWeb: www.dementia.jePost: DemenaJersey,OspreyHouse, OldStreet,StHelier,JerseyJE23RGHours: 9.00 - 14.00 Monday to FridayJerseyChariesCommissionnumber42•PatronDrKarenKydFind, Like and Share us onwww.dementia.jeAn acon plan for the rst year of the strategy is being published at the same me. Regular updates on the progress of the acon plan and the wider strategy will be published by Demena Jersey on our website and in our magazine which you can sign up to receive by emailing info@demena.je.Next steps