Category Archives: Dementia Friendly Towns

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

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More than (Dementia) Friends

There’s not many times I look over the Border and think ‘I wish we had that’.  So I was delighted when Dementia Friends launched in Scotland and even happier to get my badge. Already a great success, Dementia Friends is a wonderful resource and a very quick and easy way of helping folk find out more about dementia; a boon for our aspiring Dementia Friendly Communities.

But it’s just a start, we need more.

In the world of paid caring, they already have quite a developed approach to using people to make change happen. Health and social care services staff have a Dementia Champions Programme which supports people to act as change agents. There are also Dementia Ambassadors who help spread knowledge and understanding about dementia.

When I read about these schemes I wanted to help, after all, walking alongside our loved ones with dementia gives us a very keen appreciation of the importance of respect and understanding amongst the paid workforce as well as the community dimension. We’ve got concrete experience of what makes a difference and are a powerful force for change. We can tell you in words of one syllable why a smile matters.

I was amazed to find that the scheme doesn’t include unpaid carers, I can’t be a champion or ambassador. I was gobsmacked. They should biting our hands off. In the words of the late great Ian Dury, what a waste.

A few e mails and I soon found people who got it and  I was introduced to the Equal Partners in Care ( EPIC) programme. It’s all about helping paid staff in health and social care settings work more closely and effectively with carers.

A short while later, Val from my Mum’s care home (who’s a Dementia Ambassador),  Scott (Mum’s then key worker) and me were interviewed by Gill for EPIC. We each talked about how by working together Mum got great care, I was happy and Val and Scott loved their jobs. It’s just better for everyone in every way.

It felt like a celebration and a chance to say how much we value each other.  Like when Mum gets upset when I leave, Scott comes over and says ‘Goodness gracious me!’ Mum giggles and says ‘Great balls of fire!’ And the pair of them, and everyone else in earshot, beam. Mum sees his smiling face, feels at home and waves me off quite happily. I leave knowing Mum is happy and safe. I never leave with that horrible guilt and worry about what happens when the door closes behind me. I don’t want anyone to leave a loved one like that.

I couldn’t do their job, but I am so glad people like Val and the other staff are round to help me and Mum through. They walk beside us and I can’t begin to explain how that helps.

It’s so important that the voices and lived experiences of people affected by dementia are part of the change process in health settings not just in the community. Friends are great, but we also need powerful Ambassadors and Champions; a growing number of people living with dementia across Scotland want to have their say and we all need to be included.  We are an important part of the change process. Most people who live with dementia – before or after a diagnosis, unpaid carer or family member – are in a community. People in residential care and hospitals are still part of our communities. The paid carers of the future and people who might get dementia in the future are in our communities, in schools, jobs, shops. We have to be a more powerful part of the equation.

The world needs to change too and we need to do it together.

So welcome to Scotland Dementia Friends. Now let’s have the rest. Please.

Cheers

Sue

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An (accessible) room and a kettle

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It really doesn’t take very much to change the world. All you need is a cause, a room and a kettle and anything can happen.  It’s that simple; find a way to bring folk together in common cause and things will never be the same again.

It’s certainly working for us in East Lothian where we’ve now got 3 Dementia Friendly conversations up and running and more hoping to start off too. These conversations are changing things, though as befits a complex messy world, it’s not happening in a simple linear way!

As we get more experience, a pattern is emerging and I’m starting to relax and trust the process. First find your passion, something that really matters to you and you want to do something about. Then find people who care about the same issue and also want to make things happen. Share your dreams widely and freely. Talk to people in the streets, in shops, as you go about your daily business, if they’re interested you’ll soon tell. If it looks like a go-er, start planning; bring the wider community in, talk about what each individual can do to make things change. Find your room, make a date and get that kettle on.

images-2Those of us who truly believe that if we build it, they will come, know exactly what I’m talking about. This is about creating a community field of dreams. It starts with enthusiasm, passion, vision – they act like magnets, provide a coordinating principle, a centre of gravity – pick you imagery to suit.

At first it can seem a bit disorganised and scary. You can’t set up much of an agenda because every conversation is unique and has to go its own way. The usual ways of running meetings don’t work and there are no formal rules or procedures. But the coming together of people to change the world has an order of its own. Gatherings have to be value based – mutual respect and listening really matter. Gatherings have to have a purpose, even if that takes time to emerge. Conversations have be facilitated and structured so that everyone can contribute in some way or another, so they flow, evolve and progress into action.

Plans slowly begin to crystallise, we start talking about how to bring others into our discussions, they bring new ideas, new contacts, new resources. Conversations are rooted in our local community, our local people, our local places, our local issues. They are real and meaningful and grounded in the reality of places and people.

Someone’s on a group that’s working to improve the High Street, maybe we could integrate some dementia friendly thinking in at an early stage. And this is the perfect time because that’d help everyone and save costly mistakes. Someone else is developing a new service which would fit so well for people with dementia with just a small tweak or two, with a bit of training they think they could make a big difference here. What if the Youth Project and the Day Centre got together to organise a music event, that would be really special and would help build understanding and friendships across the community.

We start to talk about how to take things a bit further, we get ambitious. A chat with someone who works with the schools so we can reach more young people and hear what they think about getting older in their community. A group passionate about physical activity gets together to look at how we can remove barriers.  Local organisations and services offer us rooms we can use for meetings and help with printing. We organise a community event to bring everyone together and involve the Business Association. We work out the big things that we can’t do ourselves and find someone to help us. 

Several years ago a wise friend said that if we wanted to make the vision of the Christie Commission a reality we had to find out what makes change happen. It’s oh so clear to me now. People make change happen. I make change happen. You make change happen. We make change happen.  Changing the world doesn’t start with systems and processes;  you can’t change the world just by putting the word in a job description, If it was that easy. we’d all have done it years ago.

The proof of the pudding is in the eating and Dementia Friendly East Lothian is making change happen. Small changes will make big differences, but we need to address the big things too if we are to ensure we get the services and communities that we want and need.  

How far can we get? We don’t know yet, we’re not even thinking about limitations, we’re being positive. In the words of another wise friend, we’ll proceed until apprehended.

And all made by people with just a kettle and a room. #GODO

Cheers

Sue 

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Taking it personally: One woman’s mission to change her world

For many years I believed that research and evidence would change the world. I spent years doing research on how new and innovative approaches deliver better services and achieve better outcomes. I spent hours in round tables with all kinds of people talking about how we can support ‘joined up working’ and break down silos. I did and transcribed hundreds of interviews and group observations. I read libraries full of books read, summarised and disseminated them.

Then I saw the light. I was working for the Commission on the Future Delivery of Public Services (the Christie Commission) when the penny dropped. Christie showed us that great public services, person centred, effective and empowering, were already with us. Research had been telling us for years the factors that make a difference. The problem was that we weren’t paying attention.   We wanted more robust research, bigger numbers and more proof, even though the messages had been dripping through in small studies and from voluntary and community groups for many years. Why were we resisting the emerging truths? Why were we so keen to hold onto what we knew wasn’t working?

The Christie Commission reminded us all that public services are about people, and that often our best public services happen because people make them happen – despite the system.  It’s not the system that delivers the services, but people with passion and commitment and determination.  I started to take things personally and began to reflect on my experience of services; I’d been carefully keeping the two separated  (or trying to!). I got plenty of food for thought.

For the last decade I’ve been living a double life –   by day a public servant and  for the other 24 hours of the day, a carer for parents with dementia who wanted to live independently as long as possible.  I moved gradually and almost imperceptibly  from an occasional user of public services to a carer with 24 hour responsibility for loved ones increasingly dependent on a range of public services to get by.  The quality and availability of these services controlled my days and kept me awake at night.  I was up close and personal with the reality of public service delivery from the sharp end. It was quite an experience.  

What shocked me most was the complexity.  Despite having worked in and around public services most of my life, I struggled to understand what was going on. The sheer volume of different people and services we had to interact with was scary.  Mum and Dad were defined as ‘complex cases’ which meant we had input from myriad professional groups and services. GP and dental appointments, podiatrists and  opticians gradually escalated to include hospital visits, tests, assessments, treatments, reviews. We had referrals from across the Health Service and social work.

Gradually I had to deal also with banks, energy providers, the DWP, you name it.Every person needed authorised to speak with me, everyone was fixing a different bit, almost no one had a focus on the whole person. Different faces, different buildings, bus trips here there and everywhere. Being old and having dementia is a full time job! I was increasingly enmeshed in a very complex system.  When my parents had falls, the whole system ratcheted up and we added a whole new layer of concerned professionals. I struggled really hard, what must it be like if you’ve got dementia and are managing alone?  How on earth do you find your way to new hospital annexes and departments in places you’ve never heard of?  Even if there are bodies out there to help you, how do you know that? How can you change a lifetime of being independent and taking care of your own life?

I dread to think how my parents would have coped without family support. In all that complexity, confusion, fear and uncertainty the kindness of strangers shone out.  The people who took time to show they care, who understood our confusion and fear, who saw us as people – they helped us more than you can possibly imagine. Being treated with kindness and humanity made an incredible difference to my parents and me.  The world can be a very scary place if you’ve got dementia. A kind word, a gentle hand reassured and calmed my parents, helping them understand and cope with what was happening. It helped me too as I struggled to take on this new and scary role of carer.

I’ll never forget the kindnesses.

Ray, the volunteer from Age Concern (now Age UK) who helped Mum understand why power of attorney was an essential safeguard to protect all our interests. Ray spent months explaining, reassuring and helping Mum make a very hard decision. Without that power of attorney life for us all would have been impossible. Mum having an independent advocate on her side was a very powerful experience for us all.

Sue the health visitor who worked with me and Mum when Mum was opening the door and letting people in. Warning her of the dangers of opening the door made Mum very anxious and confused. Sue designed a cheery smiley sign for the back door reminding Mum to check who was there in a way that made her feel confident not scared. Feeling relaxed made Mum confident, happy and better able to understand her surroundings.

Carol from the Day Centre who helped me find my way through services and red tape and who gave Mum many happy times and awoke a love of singing which has been a great gift along Mum’s journey.

I could go on and on, Fiona, Liz, Diane, Scott. Just a very few of the many people who have helped Mum live not exist.  They treated us as people, with kindness and respect; they treated us like fellow human beings.

The worst times, which I won’t dwell on, were when Mum was invisible. There were times when people walked past Mum as she screamed in pain or sat bewildered all day in her nightie in a side ward waiting to be discharged. I really don’t blame the staff, I’m sure they are all committed, hard working, dedicated and under-valued. But what kind of system makes people like Mum and me invisible? What kind of system dehumanises us all?

So when my full time caring responsibilities abated and life shifted on its axis, I realised that if I’m serious about changing the world, I had to get out there and make things happen. Public services won’t just change on their own, everyone has to take personal responsibility for their actions and I’d done enough research and enough talking.

Time for a change.

  • I need to be part of my community, alongside the people ‘out there’ who are making change happen.
  • I need to focus on what I really, really care about – improving the quality of life for people with dementia
  • I need to focus on connecting with people, building relationships and networks
  • I need to be free to respond and react as and when I judge it to be right
  • I need to find out how far I can get in changing the world, as a citizen who wants to make things better.

So, I’m setting out to make our local communities more dementia friendly.  We’ve made a start and this blog will help me chart and reflect on my journey. I know there’s lots of inspirational people out there to help me on my way.

Wish me luck!

Take care

Sue

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