Dementia Friendly East Lothian: Paper to the European Association of Work and Organisational Psychology; Oslo May 2015

The Christie Commission on Scottish public services showed a clear consensus about what great services should look like.

  • Reciprocal – working with not doing to – co design, co produce, co deliver.
  • Based on value and mutual respect for all – people using, delivering, designing and commissioning services
  • Recognising everyone has assets and capabilities and we need to build on and support these. These values need to permeate all relationships and partnerships
  • And we have hopes, dreams and aspirations too we are not just bodies to be serviced or work units
  • Also a strong focus on social justice – tackling inequalities

We already have great services but they are in pockets and usually good things happen despite the system, Christie spoke to our hearts and our heads about our common humanity and common purpose and the urgent need for change, this is about being hard-nosed and warm hearted. It is a compelling and unifying vision for public services that was respected by people at all levels from First Minister and Cabinet Secretaries to those of us delivering and using services. Christie reminded us that people make things happen – we make things happen, often despite the system.

 DEMENTIA POLICY IN SCOTLAND

 

We have a very positive policy environment: A Dementia Strategy, Charter of Rights, Standards of Care, Promoting Excellence. Scotland sees its Dementia Strategy as a flagship policy leading reform of our wider public services. At the core are Rights, Assets, Communities and tackling stigma. Strategies to date have focussed on service reforms like a shift to early diagnosis; post diagnostic support and integrated services provision. The third Dementia Strategy due next year will strengthen the shift from a medical to a social model and support autonomy, connections and relationships in key areas:

  • End of life
  • Support for home and community life
  • Quality of care
  • Involvement of people with dementia
  • Dementia Friendly Communities – prevention & quality of life
  • Explicit shift from medical model to social
  • Support autonomy, connections and relationships

 DEMENTIA FRIENDLY EAST LOTHIAN

DFEL is inspired by Christie; if people make things happen, what can we do in our communities?   Our aim is to transform the quality of life for people with dementia however severe their dementia and wherever they are living. It’s a community led initiative rooted in how communities include and support everyone. Led by local community councils, churches, day centres, schools, libraries, care homes, youth organisations make things happen.  We are nota  top down, big money initiative,  we are grassroots and cheap!

DFEL works by opening up community conversations – ‘What is it like to live here with dementia?’. We ask people with dementia what they want from life and that sets our agenda. Just like everyone else – places to go, people to see, things to do and communities respond magnificently. The answers to their hopes lie in our communities and how much we welcome and include everyone. Talk gets a buzz going and we start to widen things out through local events, networks, meetings, Facebook and social media. We involve everyone.

There is a particularly strong intergenerational focus; young people have a right to be involved and they have been in the lead in making things happen. The community hears the voices of people with dementia and starts to respond. Things start to happen.

THIS IS WHAT IT LOOKS LIKE!

Brownies and care homes 7-10 year old girls. I spoke to them about dementia and they said they wanted to show people in a local care home how to do Loom Bands and Canadian daisies. The local care home agreed and a week later 30 brownies and 20 residents got together. It was a great evening and there are Loom bands all over the Zimmers. The residents then reciprocated by raising money for Brownie camp and the all got together to organise the annual Daffodil Tea with Brownies and their parents, residents and their families and staff and locals having a great day.

Easter Eggs – Myra and Margaret knitted them and filed them with chocolate eggs and donated them to the local Foodbank

Day Centre staff asked people what they would like to do and the ideas flooded in. Mostly people want t visit local attractions – garden centres, museums and shops. The community is making these more accessible t and friendly to people. The Day Centre

The Day Centre Choir is dementia friendly and involved people with dementia, staff, volunteers and local residents. It performs regularly and has just got funding to do more.

The Good Memories Cafe where people can come along to the local museum and learn, spend time with friends and have a cuppa

More community events from sponsored walks to tea dances and indoor curling.

IN OTHER WORDS WE ARE….

Creating positive social environments – the social psychological environment has a major impact on the experience of dementia. It is truly transformational to create positive environments that are non judgemental, friendly and relaxed, where we work to people’s strengths through creative arts, emptions and non verbal communication. These are good for everyone!

Promoting a range of positive narratives (and images) of hope for people with dementia and carers to counter narratives of despair. People can have a meaningful life with dementia, carers are not just carers they are partners, daughters and sons and friends. We support the narrative citizenship of people with dementia to create and share their own life stories, that do not end with a diagnosis of dementia.

Repositioning people with dementia as valued and active citizens, not patients or sufferers, or the cared for. We also reposition Care Homes as part of our communities so residents can maintain friendships and activities for as long as possible. We promote communities as having a voice and a role in dementia care.

Building relationships and understanding which challenge stigma and isolation. The creative arts and intergenerational working are particularly important in this as they help people see dementia and life with dementia in a new more positive light.

Celebrating diversity – every community, every person is different and has a unique role to play and learn from. In Dunbar they focus on information and the library is at the centre of things. In Tranent they raise money to treat people with dementia and carers; Haddington wants to set up a dementia inclusive intergenerational choir and Musselburgh wants a street parts for everyone to join in. Brilliant.

Authorising action – I say ‘what a great idea, do it’ a lot and provide encouragement and cheer lead.

 CHALLENGES

There are some challenges that we’re working through.

How to promote good practice and quality – Lots of people are enthusiastic and keen to get involved but how do we help everyone to get to understand dementia more so they can do this better?

How to ensure the community is seen as a partner with an important voice and role to play . The community has a lot to say when it is asked in the right way, but how do we get our voice recognised and involved, how do we avoid getting stuck in meetings. We have lots to contribute. Eg Delayed discharge and community assets.

How to put ourselves out of business – we don’t want to create or support the ‘dementia industry’ we just want ti change the world!

How to generate more robust evidence – Whilst all the evidence I need as a daughter that something works is a smile, commissioners want numbers, dementia doesn’t easily oblige.

Finally, how to get meaningful engagement with organisations and not just tokenistic invitations to meetings and more meetings…..

IT’S WORTH IT!

We all know what good dementia care looks and feels like, this is what it is for me. My parents, both living with a dementia, finding a moment of happiness and love, together. That’s the goal and the gift of good public services.

 

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