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Learning from the early stages of the ‘Circles of Support’ Project

This project aims to support people with dementia to be included in family and community life. It involves working with 40 people with dementia and their carers across four areas, implementing Circles of Support to help them make changes in their lives. The project has engaged local partner organizations and established an advisory group to guide its work. The findings include the importance of flexibility, making the concept explicit, and helpful starting points for forming Circles of Support.

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Learning from the early stages of the ‘Circles of Support’ Project

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  1. Learning from the early stages of the ‘Circles of Support’ Project ADI 2012 Friday 9th March 2012

  2. Background • NDTi and Innovations in Dementia – partner organisations with a shared aim of finding ways of supporting people with dementia to be fully included in family and community life • Designed this project to develop and test practical ways to help to do this • Successful joint bid to Department of Health (S64) to get 3 years funding for this project, from June 2011

  3. What are we trying to do? • Taking an existing idea (Circles of Support) and seeing if it works with people living with dementia • Working with 40 people who have dementia and their carers - 10 each in: • Devon • Dorset • Portsmouth • West London • Develop Circles of Support to help people live their lives: think about changes they would like to make, and support to help make these happen

  4. How are we doing it? • Taking a community development approach • Engaging a local partner organisation in each of the 4 areas to help us ‘recruit’ and work with people with dementia on the project • Upstream in Devon • Age UK in Portsmouth • Alzheimer’s Society in Dorset and West London

  5. Project Journey to Date • Engaged ‘hub’ organisations in each of the 4 areas • Advisory Group established • Overall approach and supporting materials /resources developed and tested in each area • Publicising the project more widely within and beyond each area • Working with a broader range of organisations (e.g. CSV) to increase awareness and explore how we can work together to take this forward • The first ‘Circles’ are forming

  6. How are we doing it? (continued) • No 1 priority – people with dementia are at the centre of everything we do in this project • Advisory group set up to help direct and guide the work, including: 4 people with dementia; 2 family carers; local people from all four areas • Core project team provides development support: Project Manager and Site Leads for each of the 4 areas

  7. What is a Circle of Support? • A group of people who come together to help a person: • Work out what would help them to live their life, thinking about their priorities, hopes and needs • Think about what could be done to make these things happen • Make them happen – through people in the group working together and with that person • Often a Circle of Support has: • A ‘facilitator’ – someone who works with the person to set up the Circle and help it run • Formal meetings where everyone in the Circle gets together with the person to plan and agree actions • BUT – it doesn’t need to be like that.....as we have found.......

  8. What have we found? • Not everyone wants or needs a ‘Facilitator’ – although a ‘link person’ is usually very useful (especially to help get things started) • Circles can be very small – as little as 2 people • Circles can help re-connect people who have lost touch • Not everyone wants formal meetings: • This can feel uncomfortable • The Circle doesn’t need to all meet together • People can link up in other ways, by phone or email etc • Everyone’s priorities and hopes are different, what seems small to someone can be really important to someone else • FLEXIBILITY is absolutely key to making this work for people

  9. Early, Important Lessons • The idea of Circles of Support really makes sense to people • It’s a new concept / approach , although many people have informal arrangements for sorting things out • Giving this a name and making it explicit can make it feel alien and ‘official’ (like a service) – so we are exploring different ways for making this clearer.... more “normal” • Making it explicit is important - helps people plan and feel confident that they can get the help they need to make their plans happen (this also helps family carers) • It can take time to ‘find’ people to take part if natural networks have fallen away • As a result of all this, it can take a while for a Circle to get started

  10. What Helps? • Helpful starting points include: • What people want to do or change and who is in their life: forming a circle around these goals and this network • Asking people about their hopes and fears: the circle focuses on ways to help the person address or avoid their fears and realise their hopes • Making sure that the person developing the Circle and the Circle Link person are well matched • Keeping a clear focus on living well with dementia, and having a belief that anything is possible • Stories and examples of what Circles of Support can help people do • Being creative, flexible and open to difference - every Circle is different / unique (just like people’s experience of dementia) • Connecting with a range of local organisations, groups and people

  11. Thank You! Any Questions? alison.macadam@ndti.org.uk www.ndti.org.uk @ndtirob ndti.org.uk

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