Dementia Friendly East Lothian: Reflections on 2014

Dementia Friendly East Lothian exists to make life better for people living with dementia. Over 2014, we’ve grown into a diverse collaborative of folk across East Lothian and beyond, all sharing a common cause and passion.  A lot has been achieved this year and I wanted to capture the essence of 2014 and say a massive thank you to everyone who has been part of making it happen.

It all started with a simple question: What’s it like to live here if you have or care for someone with dementia? What’s it like going shopping, meeting friends, getting a haircut, having a coffee?  Where are the good places to go are if you have dementia? Across the board, whether it was going to the farm shop, visiting a stately home, or going to the vet or a gym, it’s clear; it’s people that make places and services dementia friendly. A warm smile, patience and understanding if things go a bit awry or take a bit longer than usual, and respect are what make the difference.

In our conversations across  East Lothian,  themes soon emerged.  Just like everyone else, people with dementia  want places to go, friends to see and things to do.  They want to keep active; have meaningful lives and be connected across generations and across the community. People living with dementia want to keep on doing the things they do every day for as long as possible. They want to be respected and valued members of the community. People want to live with dementia.

It’s clear that dementia friendly places and services are here already across our communities, we know what they look like, so how do we make them happen everywhere?

Dementia Friendly East Lothian works on the simple fact that people make change happen, very often despite everything. We are all about people. We open and grow conversations which engage people in communities, shops and businesses to talk about dementia. We chap on doors, we talk about our experiences of dementia as we go about our business in the communities we live in. We work with local media, organisations and networks to take the conversation wider and deeper into communities.

As the buzz about dementia grows, local people get in touch to find out more or ask what they can do to help.  Community events draw folk in to share their views and experiences and find out more; people share pictures and ideas via our Facebook page. Others want to get involved and we talk about what dementia friendly means to them. We go with the flow of the community and allow time for word to spread through local networks. Local champions and leaders emerge and get active, things start to happen.  Dementia Friendly East Lothian  simply helps to keep the conversations going, make links and do whatever we can to oil the wheels from taking the note at a meeting to doing the washing up after an event.

Over the last year, 9 communities have expressed an interest in becoming dementia friendly; 6 are now actively engaged in local conversations, 4 have had community events.  We’ve got over 400 followers on Facebook and an e mail list of over 200 organisations. Local papers have featured Dementia Friendly activities regularly though the year and we’ve been covered by local radio stations.  In November we held our first collaborative learning event where people from across East Lothian came together to talk about what they’ve been doing and what we can do next.

The buzz has turned into action and life is getting better for people with dementia:

• People with dementia told us that they lost contact with friends when they went into residential care. Now care homes in North Berwick take residents round to each other for  tea so friends can stay in touch.
• People with dementia wanted things to do and places to go. North Berwick and Haddington libraries set up drop in cafes and Sporting Memories groups and have done dementia training to make their services  accessible to everyone locally.
• People with dementia wanted fun and laughter with their friends and family: Luminate gave us money for 2 community events in Haddington and North Berwick Day Centre  for over 100 older people, many with dementia, and their friends.
• People wanted better links with other generations:  Strive, Dunbar Day Centre  and Dunbar Grammar School organised an intergenerational tea dance. In Haddington, pupils from Knox Academy organised a Christmas Carol Concert with Haddington Day Care Centre. North Berwick Brownies regularly visit Fidra Nursing Home and other Brownies are planning to visit other local care homes

There’s lots of great things in the pipeline from community cafes to sponsored walks to swimming sessions and local people and organisations are raising funds to support dementia friendly work in their own community. People are accessing training on dementia and using the new Dementia Friends scheme. And that’s on top of the great work that’s already going on in Day Centres, Care Homes, schools, libraries and churches up and down the county.

So what about 2015? There’s work to be done to strengthen the voices of people living with dementia so they have a greater influence and say on the things that matter to them. Some communities across the UK have local forums where people with dementia come together with decision makers and service providers to improve things. That might be an option for East Lothian too. Our Dementia Friendly Communities are growing apace and Dementia Friendly East Lothian is there to support them and new communities be the type of Dementia Friendly Community they want to be. We help communities share experiences and learn from what’s being done in East Lothian and beyond.

The best thing about 2014 has been seeing the wellspring of generosity of spirit of people across East Lothian to make a difference; to make life better for their friends, neighbours and communities in whatever way the can.  People have given their caring, their time, energy, creativity and money to make things happen. New relationships and understandings have been built. And we have done this ourselves. This is not a top down initiative, it comes from the heart of our communities, we are making this happen because we care.

A massive and heartfelt thank you to everyone who has done something to help make East Lothian a bit more dementia friendly this year. Whether you’re picked up a leaflet, baked a pancake or tiffin, spent time with someone with dementia, done some dementia training, smiled a bit more or become a dementia friend, thank you for helping to making our world a better place.

Wishing you all a very happy and healthy 2015. May it bring you everything you’d wish for yourselves. And of course a year in which East Lothian will become even more Dementia Friendly!

Suex

Creating our vision for a Dementia Friendly North Berwick

Magic happens when people get together to change the world, so that’s what we did to create our vision for a  Dementia Friendly North Berwick.

After 6 months of talking to people, chapping on doors and walking the streets of North Berwick we finally held our Dementia Friendly Community event on Tuesday. We reckon about 100 folk came through the doors of the Hope Rooms to help us transform our town.  What a range of people! Local shopkeepers, volunteers, people with dementia and their families and friends; care providers, policy makers and service providers all came together to talk, share their ideas and maybe sample a scone or two (baked by our fabulous North Berwick Youth Cafe – thank you guys!).  

In the centre of the room we had large maps of North Berwick, Dirleton, Gullane and Aberlady and Laura and Andy helped folk to tell us where were the great places to go and what made them good. We have a wealth of great places to go!  Our very own North Berwick Day Centre and care homes, cafes, pubs and garden centres, museums and golf clubs and of course the beach. Even the RNLI got a mention for being friendly and taking time to explain about their work. What made a place great was the people – friendly, supportive, kind and respectful people make good places and good services great – simples.  This really is all about people.

Sandra from the Community Centre set up a massive net for us to catch everyone’s ideas for making things better. What a catch!

People wanted:

• Things to do and places to go – physical exercise, dancing, music and reminiscence all featured a lot, with a reminder that transport is critical and places need to be accessible and dementia friendly
• To be treated with respect and understanding – for example by shop keepers and paid care providers, through training, information and advice
• Advice and support for people with dementia, their families and carers, including about what’s on and legal matters and
• Support for (unpaid) carers and their important role
• To build more connections across generations between older and younger people in our community

A real high spot was when Helen from Fidra Nursing Home and 3 of her residents led us all in a hand jive dance to the Proclaimers 500 Miles. You can see from the faces that it was great fun and something we could all do together.

So what next? Sandra is writing up the day so we can share all the great ideas more widely with our community. We’ll be looking for offers of help to make things happen. Who can provide some training? How can we help local shops and services? How can we support local carers more? We’ve got some really good ideas for small things that will make a big difference, and that of course is what it’s all about. 

We’ll also be talking to other communities who are interested in becoming Dementia Friendly too. We did all this with a small grant (£500) from the Community Centre and a lot of goodwill and active support from volunteers and paid staff from a whole range of bodies and organisations. Yet again it shows that changing the world is not really about money, it’s about people.

Our hope and belief is that by making our community a better more supportive place for people with Dementia we will not just improve their quality of life, we will also help people stay safely and happily in their own homes for as long as they want to.  Research shows the importance of social connections to our health and well being and we know that living with dementia can be a very scary, lonely and risky existence. I know that for my Mum, when she feels understood, respected and supported she is calmer, happier and healthier, who doesn’t?

As Mum would say, it’s all about living and not existing.

Massive thanks to everyone who made it such a great day. It really was a day to remember and the start of the next stage of our journey.

Cheers

 

Sue