What Dementia Friendly East Lothian is all about

Who we are and why we’re here

  • Local people who want to make our communities great for people with dementia and carers to live, visit and work in
  • We come together as a loose, community led collaborative of local residents, carers, volunteers and paid workers with common cause
  • Rooted in and led by communities across East Lothian, diverse and different

We share a vision for people living with dementia and their carers – paid and unpaid that people with dementia:

  • Are active respected and valued citizens, living the lives they choose for as long as possible wherever they live
  • Have a quality life, with choices and influence over things that matter to them
  • And strong social networks, friendships and connections
  • Are able to see that life with dementia can be meaningful and valued
  • Have things to do, places to go and friends to meet
  • Are better supported and understood by service providers and decision makers
  • Feel free from stigma and discrimination and are more able to seek help and advice and talk about dementia
  • Have greater voice and visibility

Communities across East Lothian are actively engaged in dementia friendly conversationsAll have different priorities, personalities and approaches, each doing it their own way

  • Tranent
  • Haddington
  • Dunbar
  • Musselburgh
  • Longniddry
  • North Berwick

Because every place and community is different and that’s what makes it work. Communities lead and own conversations, not agency led. In July Dementia Friendly Tranent became a registered charity.

 

We have 3 important principles:

A) Empowering people with dementia to live as respected and valued citizens wherever they live and however severe their dementia

  • People with dementia are actively involved in all events and we use different methods and approaches to do this
  • Community views and opinions are what matters
  • Our events and meetings are open to everyone.
  • We use Facebook and other media to communicate widely, it’s been very effective
  • We want to do more to make sure people affected by dementia have more input and say

 

B) Supporting communities where we respect and support each other

DFEL runs on generosity of spirit, citizenship, love and caring for other human beings

  • DF only works when the community owns and leads it, it doesn’t work if organisations do it. It needs a different approach and different way of doing things.
  • In different communities the lead has been taken by community centres, community councils, day centres, churches and schools where local people have decided to make a difference
  • The only funding has been from Strive for me 2 days a week so I can travel round East Lothian and provide whatever support I can. Strive took a risk and gets little credit!
  • Success will be when I’m no longer needed.

C) Intergenerational & Inclusive

  • Dementia is about everyone whatever age you are. We all benefit from finding common cause and friendships.
  • Young people are taking the initiative to make their schools and towns Dementia Friendly – they want to make a difference

We work to help everyone:

  • Have a deeper understanding of what life with dementia is like in the communities we live in
  • Know what they personally can do that will make a difference
  • Feel supported and empowered to act
  • Find greater meaning and value in their lives too
  • Come together across different ages and issues to make life better for everyone
  • Have fun together
  • We do a lot by community events, having fun together, awareness raising and training. The best way to learn about dementia is to spend time getting to know people with dementia.

Our values and core principles are simple:

  • Having dementia doesn’t take away the right to be an active citizen with rights and choices
  • Having dementia doesn’t mean the end of dreams, aspirations and hopes for the future
  • Dementia is about everyone of all ages, not just older people
  • Dementia Friendly is also human friendly, everyone benefits
  • A smile, understanding and mutual respect go a long way to undermine the stigma that dementia can carry
  • People make things happen, often despite everything!
  • Our communities are better for everyone when there is friendship and generosity of the human spirit to care for others
  • Every place and every person is different, we value and respect diversity
  • We get further and farther by working together with others who share our aspirations
  • We all have an important role in helping support older people in our communities and we have great ideas about how we can do more
  • We want to find better ways of helping people with dementia

There’s a lot of great DF energy across East Lothian! We have active and engaged communities.

 

What next

  • Find ways so people with dementia have more say and influence on decisions that matter to them
  • Keep encouraging and supporting East Lothian communities to talk about and become dementia friendly
  • Get better feedback on what local DF communities need from DFEL to grow and embed change locally
  • Support a Dementia Friendly East Lothian Network and learn from other DF communities across Scotland and more widely
  • Support and share good practice and innovation as thinking and practice about dementia evolve
  • Work collaboratively with organisations with similar values and goals for example, mental health and positive ageing
  • Work with communities to influence local decision making and services for example through Area Partnerships
  • Help agencies and organisations with paid staff work more effectively with communities and people with dementia, to work with not do to

Good Practice Foundations:

  • Evidence and theory – change; dementia and communities
  • Simple change model – people make change happen, often despite everything, so find ways to help people to follow their passion and change the world
  • Embrace diversity and difference
  • Create space and opportunity, mutual respect and trust
  • Make and take time – don’t rush it let networks work
  • Keep learning from each other and share generously

What does success look like? What does it mean to live and not exist?

Ask people with dementia and carers – they’ll tell you!

 

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