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www.dementia.jeTowards a dementia friendly JerseyOur strategy for 2023 - 2025
We are Dementia Jersey, the only local charity for people with dementia and those who care for them.2
People with demena and their carers have a right to live well and receive the care and support they need to full their potenal with dignity, respect, autonomy and equality. Whilst it is esmated that approximately 1,600 people in Jersey live with demena it is said that for each person with demena seven other people - be it as spouse, partner, carer, family and friends - are aected and also need advice and support. We also have an ageing populaon in Jersey and the biggest non-modiable risk factor in developing demena is age. In fact 1 in 5 people on the island are now aged 65 and over and the Government reports demena is the fastest growing disease on the island and that cases will double by 2036.We urgently need to set in moon a step change now in the way people with demena and their families are supported in Jersey.To achieve this our bold strategy will set us on an ambious growth path in the next three years and beyond. It aims to ensure the following outcomes: • People with demena feel supported and understood.• Carers feel equipped to support those they care for.• Healthcare professionals have the systems in place and the knowledge they need to care for people with demena.• A Jersey Demena Strategy is agreed and implemented.• Islanders understand demena. There are many bales to be fought to achieve these outcomes and people with demena tell us that public services aren’t currently meeng their needs and they regularly encounter negave atudes about demena. To achieve this over the next three years we plan to signicantly grow the charity to keep pace with demand and increase our inuence where it maers. We will work in partnership with Government to take forward the Jersey Demena Strategy and put in moon plans to improve services, systems and processes. In parcular championing a person-centred approach which priorises mutual respect and understanding to reach posive outcomes. We will oer more exible support to people with demena and those who care for them from a new Support Hub. We will build on our hugely popular programme of therapeuc events, roll out a rst class cercaon programme for businesses to grow their understanding of demena, deliver more awareness sessions to schools and much needed training and support for carers; all so we can reach more of the esmated 1,600 people with demena in Jersey and their families. Join us on our journey.We want a step change in the way people with dementia and their families are supported in JerseyClaudine Snape, CEO3
4Jersey is a demena friendly island We will work together with others to create an island where those aected by demena are supported, accepted and able to live well without sgma.Our Mission We support people aected by demena and improve understanding and awareness of demena throughout Jersey.Our Beliefs • People with demena should be treated with dignity and respect.• Every person, of any age, with any physical or mental health condions, has an equal right to the best health and social care services available to meet their needs.• A person centred approach should be used to make sure everyone gets the best care and support for their situaon.• People with demena have a right to be heard and included in all decisions that aect them and those who care for them.• Helping, caring for and protecng people is everyone’s business and is at the heart of a strong island community.Our Values Experse We use research and the lived experience of people with demena to guide our work.Choice We support people with demena and those who care for them to make informed choices about the best approach to meet their needs.Kindness and compassionWe are kind and compassionate in all we do for others and in our support for sta and volunteers.Challenge We will stand up for people with demena to get the best outcomes possible.Our Vision
5History of support Previously a branch of the UK Alzheimer’s Society, Jersey Alzheimer’s Associaon was formed in April 2010 when the Jersey branch closed because of the implementaon of the new ‘Locality Management’ structure which meant that all Jersey services were to be run from Hampshire. We changed our name to Demena Jersey in 2021 as we wanted to make it clearer that we support people living with all types of demena not just that caused by Alzheimer’s disease.From these small beginnings in 2010 with only two members of sta, we’ve grown into a leading charity in Jersey, proving a lifeline for islanders with demena and their families. We are a full member of Alzheimer’s Europe, an organisaon which has independent members from 34 dierent countries.In 2022 we had 6,500 aendances to our services. We provide expert support on demena, raise awareness and campaign to improve services for people with demena and those who care for them. We are here whenever we are needed, providing support and guidance from pre-diagnosis unl the end of the journey, no maer what the level or type of demena.
Our ambition By 2030 Jersey will be a demena friendly islandSgma and discriminaon heighten the already signicant psychological, social, emoonal and nancial impacts that demena has on individuals, their carers, families and communies. Together we can take acon to reduce sgma and move towards a demena friendly island, making sure that people with demena have the understanding and support they need to live well with demena for longer at home. Increasing public awareness, acceptance and understanding of demena and making our environment and services demena friendly will enable people with demena to parcipate in the community and maximize their autonomy through improved social parcipaon.Our ambion is part of the World Health Organisaon’s Global Acon Plan on the public health response to demena 2017–2025 which has a focus on demena inclusive sociees to ensure quality of life and dignity for people with demena, their carers and families.6
What we will do To make sure we can achieve our ambion we will work in three areas: • We will oer advice and support to people with demena and those who care for them. • We will inuence professional pracce and seek to improve services.• We will educate people to understand more about demena and remove the sgma. These are areas where we know we can make the biggest dierence, and where not taking acon would have serious consequences for people with demena. What we won’t doWe invest our limited valuable resources in support that makes a unique dierence to the lives of people with demena and their carers. To avoid duplicang the work of other organisaons and spreading our resources too thinly there are some things we won’t do, including:• We will not fund medical research into cures for demena.• We will not provide personal care for people with demena. • We will not provide training for professionals, but will advocate for the need for this to be provided by others.7
What we will doWe will make sure that people with demena and those who care for them get the advice and support they need to improve their quality of life. We will: Introduce a Support Hub which provides condenal support from demena advisers via bookable appointments, drop in visits or by telephone, online and text. Our group of advisers help families navigate and access the services that support their desired outcomes, connecng them to local groups and services that will promote their physical, mental and emoonal well-being.Connue to expand our therapeuc acvies for people with demena and their carers to meet demand and ensure maximum accessibility for clients with dierent interests. In parcular we will focus on expanding our support for men with demena, male carers and volunteers who are currently under-represented. Current popular acvies include art, music, swimming, Pétanque, coee mornings and puzzles/games and a walking group.Grow our community of volunteers, introducing a variety of ways people can get involved and that they have the support they need. Connue to grow the Meeng Place Project, which is aimed at supporng people with a recent diagnosis with a mixture of weekly cognive therapy, group work and movement.8The number of people with demena is set to more than double within a generaon.There is limited support available to people with demena and their families following discharge from the Memory Assessment Service. In parcular there are very few opportunies to aend acvies designed for people with demena and their carers on the island and none for people with mild cognive impairment, which can be a precursor to demena. There is no other organisaon on the island oering tailored support and training for carers of people with demena. However, we know that cognive smulaon can delay the onset of symptoms, enabling people with demena to live well for longer at home.Regular therapeuc acvies can also have a transformave eect on people with demena, improving the quality of life for them and their carers.The ProblemThe number of people with dementia is set to more than double within a generationAdvice and support to people with dementia and their carers 1
What we will doWe will make sure that people with demena and those how care for them get the advice and support they need to improve their quality of life. We will: • Working in partnership with the Memory Assessment Service, scope the needs of people with younger onset demena in Jersey with a view to developing a tailored support oer.• Work with the Memory Assessment Service to scope the needs of people with mild cognive impairment. In parcular scope a) the number of people aected; b) whether tailored support would be benecial; c) whether Demena Jersey is in a posion to oer any services.9How we will measure success• We will track how many people we reach through our work and evolve the tools we use to understand our impact and the outcomes from our work.It is estimated that 1,600 people in Jersey are currently living with dementia1,600
Influencing professional practice and improving island-wide services What we will doWe will use our experse to inuence professional pracce in order to improve island-wide services in the following ways. We will: Work in partnership with the Government of Jersey to create and implement the Jersey Demena Strategy and budget. The strategy will outline approaches to tackle the known challenges negavely aecng the quality of life of islanders with demena. Connue to evolve the Lived Experience Advisory Panel which is a group of people with demena and carers who comment on issues relang to their experiences on a monthly basis and whose recommendaons will be shared widely to inuence improvements (and followed up). Work with a range of partners and working groups to inuence work to improve professional services, training and policies aecng people with demena and those who care for them. Organise a series of talks on best pracce demena diagnosis and care from leading experts from around Europe, to coinside with Demena Awareness Week in May each year.10There is a range in the quality of services.People with demena have reported a lack of understanding of demena by key health professionals who support them in hospital.There is a high percentage of people with demena stuck in discharge at hospital (known as bed blocking) which is not good for them or the general health system on the Island.Severe lack of availability of care sta or nursing beds in care homes. Low levels of support available for carers. Lack of dedicated support for people with younger onset demena. The Problem2People with dementia think many health professionals who support them in hospital don’t understand their needs
11How we will monitor progressThe following factors will be monitored to help our understanding of progress towards desired outcomes:• Hospital admissions for people with demena.• Average length of stay in hospital for people with demena.• The number of nursing beds available in care homes for people with demena.• The availability of care sta.• Availability of training on demena available to healthcare professionals. • The delivery of clearly dened care and support pathways.How we will measure success Success in this area is ulmately the delivery of the Jersey Demena Strategy and buy-in from Government teams to implement it but is dened by progress towards achieving the following outcomes:People with demena feel supported and understood.Carers feel equipped to support those they care for. Healthcare professionals have the systems in place and the knowledge they need to care for people with demena. We will also track senment through an annual survey of people with demena and their carers and we will work with partners to seek out ways to track senment with healthcare professionals.
What we will do• Expand our free introducon to demena session called ‘Demena Friends’, with the ambion that all schools become demena friendly. • Roll out a new chargeable Demena Friendly Businesses Scheme which oers cercaon to organisaons who provide services to people who may have demena.• Evolve the training that we oer to carers to complement the informaon resources available and will make sure training is praccal and meets the ‘real world’ challenges carers face on a regular basis. • Pioneer a new approach to risk reducon through working with partners to create a long running campaign focused on ‘Brain Health.’12Demena is the most feared health condion for people over the age of 55.There is general confusion about what demena means and whether it is a disease like Alzheimer’s (it is not). There are also a number of common myths that demena:It is purely genec (it is not).It only aects older adults (there are a small number of adults who develop younger onset demena). It mainly aects memory (demena is a degenerave disease that leads to death).Many islanders aren’t aware of the approaches which are fundamental to making people with demena feel understood and supported.How we will measure success • We will track our impact on atudes of those who receive our training.• We will work with partners to establish ways to track islander’s understanding of demena. The ProblemMany islanders aren’t aware of the approaches which are fundamental to making people with dementia feel understood and supportedEducating islanders to understand more about dementia and remove the stigma 3
Our People We will connue to evolve and grow sta and volunteer resources in areas where we need it to meet demand and invest in learning and development so we have the breadth of skills and knowledge we need, for example in younger onset demena. We will acvely listen to our volunteers, and make sure everyone nds a way to get involved that excites and inspires them.Our ServicesWe will invest in the technology needed to simplify the experience of accessing our services for our supporters. We will connue to evolve the Support Hub to meet the needs of our clients. We will acvely listen to the Lived Experience Advisory Panel’s recommendaons and make sure that they are disseminated widely and acted upon. Our FaciliesWe have outgrown our current premises and will connue acvely looking for new premises which meet our needs. We will be an exemplar for demena friendly environments in our new premises.We will take seriously our wider social responsibility and reduce our environmental impact wherever possible. Our FundingWe will pilot new fundraising approaches, in parcular to build the number of regular givers, to create a more sustainable foong for the charity.Our ProleWe will develop targeted, integrated campaigns that raise awareness and inspire change, so that those who would most benet are aware of the support we oer.We cannot create a demena friendly island alone and promise to build new partnerships and inspire ambassadors to amplify our message. This work also includes working in partnership with people with demena and their carers, to beer understand their needs in order to advocate for them and improve services.We will maximise the opportunity of co-authoring the Jersey Demena Strategy to raise our prole and forge new relaonships with healthcare professionals.13Making it happen To help achieve our ambion of a demena friendly island we have priorised the following areas:
Ann’s StoryMeet Ann Morel. Ann joined our art exploraon group in 2021 which helped reignite her passion for drawing and Ann has since joined some of our other acvies, including a morning coee and chat and a project helping people with a recent diagnosis of demena.Ann was diagnosed with Frontal Temporal Demena in 2019, although symptoms rst started in 2015. Ann experienced diculty with speech and headaches, and while previously Ann loved to draw and created some amazing art, when the headaches started, she sadly stopped drawing. Throughout the journey to diagnosis, Ann’s husband Frank began to noce things weren’t quite right at home, and he noced Ann was losing her condence. While they were relieved to have a diagnosis, this le Ann feeling frightened to leave the house, further aecng her condence with speaking, answering the phone and most of all, aecng her passion to draw. Since joining Demena Jersey acvies, Ann has been able to socialise with other people with demena and take part in brain smulang acvies paired with speech therapy. As a result, she started to answer the phone again, was less frightened to go out and has started creang art at home again. This transformaon to her condence levels was one of the posive changes that have helped both her and Frank. We are delighted to have been able to support Ann and Frank through this journey and help reignite Ann’s creave spark.14
“As a carer, life has got a lot easier thanks to Dementia Jersey. It’s great because I can leave Ann to get on with art and chat away without a worry. It’s taken a lot of stress off. We’ve had a lot of practical and emotional support from Dementia Jersey. You feel like if you have a problem, you can talk through it with their staff and find a solution.” – FrankAnn’s Story15
Ways you can support usOur running costs are over £600,000 per annum. We therefore rely on the support and generosity of the public and the business community. All money raised in Jersey is spent in Jersey.Donate OnlineMake a donaon online via our website: www.dementia.jeDonate by chequePlease make cheques payable to ‘Demena Jersey’ and send to our address below.FundraiseRaise money through a challenge event by walking, cycling, abseiling, trekking or skydiving for Demena Jersey. Or pick a challenge of your own. Contact Nadine for more informaon. Email: nadine@dementia.jeCharity of the Year PartnershipsChoose us as your business’s charity of the year. Contact Nadine for more informaon. Email: nadine@dementia.jeVolunteerConsider volunteering at our events, for more informaon please contact Contact Susie for more informaon. Email: susie@dementia.jeContact usTelephone: 01534 723519Email: info@dementia.jeWeb: www.dementia.jePost: Demena Jersey, de Carteret House, Hilgrove Street, St Helier, Jersey JE2 4SLHours: 9.00 - 14.00 Monday to FridayJersey Charies Commission number 42 • Patron Dr Karen KydFind, Like and Share us onwww.dementia.je