Fantastic work by DEEP, looking forward to the next one!

Dementia Can Be More Than Memory

                          Some photos of our Time at Inverness gathering

Travelled by train to Inverness on the Wednesday meet up with James Maureen in Perth to. Change trains what a rush the signposting to station 5 was poor especially as we had to use the lifts

Great getting to know you session and down to some work

Thursday another fabulous morning good outcomes

I made some lovely new friends and pledged to do some work with Pat Sue And myself

Re IT use in between meeting having. (Virtual Lunch meet ups).

Next leg of the journey is Stirling we are staying in the Golden Lion Hotel to rest before a Friday event on SELF directed Support

Lovely hotel I was so tired so glad I slept very well it was heavy rain but found the Albert Hall only

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April 2, 2017 · 9:20 am

Dear DWP………

Oh Wendy, I can’t believe it , that’s awful. Is there anything we can do to Help?

Which me am I today?

The real impact on real people’s lives………..

Ok, so now you can smile, now you can place a tick against another statistic you’ve won, after all we are just a number to you – a number to win or lose.
But what effect on the real person behind the statistic – what price do you place on people’s lives?

I consider myself to be a strong person and you crushed me for a while, so well done, you achieved your outcome. I won’t appeal as I couldn’t face that whole process again. My life is difficult enough without this on going battle. So, much to the disappointment of many, I wave the white flag to bring an end to this unnecessary stress to me and my daughters – oh, yes…..had you forgotten that your actions affect far more than the claimant? It impacts on the lives of those around them as…

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Challenging the depiction of delirium in the media

The media’s portrayal of vulnerable elder people as ‘perpetrators of assaults’ shows us just how far we still have to go. Dr James Woods is a registrar in Geriatric and General (Internal) Medicine …

Source: Challenging the depiction of delirium in the media

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Being outpaced

To really communicate with someone with dementia you have to be alongside them, focussed on their world, going at their pace, it just doesn’t work otherwise. There’s a word ‘outpacing’ which refers to how people with dementia get left behind when life goes at its usual fast speed, making it hard for people to keep up.  It happens to other people too. It is the reason why co production, collaboration and person centred working matter.

If you’ve experience of dementia in any capacity you’ll know that things just don’t work if you don’t slow down and focus on the moment. It’s a lesson many of us have learnt the hard way. Trying to rush Mum out to the Day Centre so I could get to work increased both our anxiety to unbearable levels and things quickly fell apart leaving us both late and emotionally exhausted.  I had to learn patience and put my needs and timetables into second place so we could both get where we needed to be, which was of course the same place place – Mum having a great time with her chums at the Day Centre.

I had to do things differently.  Logic and reason didn’t work. Mum could pick up every hint of anxiety and sense of ‘rush’ in my body language or voice and that raised her anxiety. Deprived of aspects of cognitive thought, Mum used whatever information she could to make sense of what was happening. Increasingly this was non verbal and emotional and she became a master non-verbal linguist. I didn’t know the term at the time but I was definitely ‘outpacing’ Mum, leaving her behind instead of working together as a team. Gradually we learnt a new way of doing things together, collaboratively, at just the right pace.

Working with communities involves a very similar process of finding a shared beat and learning to work together.  It’s how we’ve been developing our Dementia Friendly Communities.

Dementia Friedly East Lothian started with a conversation between a small group of people about what life is like in our community if you have dementia or care for someone who does. Gradually people joined in and conversations spread across the county, involving more and more people.  Every week brings new people and new conversations which  have been growing and spreading through our communities in an organic and evolving way, popping up in unexpected places, leading to delightful and unpredictable results. If we’d set out a plan we wouldn’t have come up with half the things that have happened; something special happens when humans create things together.

DFEL’s role is to support conversations and provide opportunities for people to learn from each other in a  very real, practical and collaborative way. Some conversations make connections and build relationships, others lead to action and things start to happen. Very human, very real. No timescale, no hierarchy. Plans and actions emerge from the process of being in community.

This is very different to how organisations communicate with, or too often, to us, and the nature of the relationship this communication supports. Meetings are arranged, papers written, consultation papers drafted, deadlines set and boxes ticked. Information moves up and down through formal channels and processes, systematically denuded of subjectivity, passion and the messiness us humans bring in our wake.

Sometimes we get invited to join in  and we have to squeeze our hopes, fears and aspirations into tiny boxes, often the with only a tick  or a cross.  We have to respond in timescales that are alien to the pattern of daily life and which make it almost impossible to talk with each other about what we might collectively think as a community.

But things are changing. In East Lothian we have Community-Chaired Area Partnerships which sit under the Community Planning process. Potentially they provide a vehicle for engaging wider communities in getting their voices heard, working with the many community organisations such as Community Councils, Parent Teacher Associations and local networks. Already local older people have had the chance to get their views across about local priorities and they have made a difference.

There is something about dementia that shines a spotlight on what it means to be human and is challenging all of us to do things differently. It demands us to pay attention to authentic communication and the inter-dependencies between us. We have to change how we relate to each other as individuals in families, in communities and in our working environments. This new relationship is about understanding that if we want to get where we want to go, we have to go together. With an authentic relationship, with a shared focus, walking  and working together,

That’s co production; that’s collaboration; that’s being human.




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Loss of emotions…….

Wendy, I wish I had a magic wand. We’re surrounded by rudeness everyday and living with dementia highlights how it hurt and how important it is just to say sorry. Take care.

Which me am I today?

Outrage is one emotion that appears to be missing in my repertoire of emotions now. Maybe this shows again the individuality of the dementia experience. The emotion I feel in abundance though is sadness. This appears to have superseded all others. Situations that would once have annoyed or outraged me are now replaced by making me sad – tears flow more easily than before. I seem to feel just 3 emotions now; happy, content or sad.. They are very basic emotions but highly emotive and decisive in highlighting how something or someone makes me feel, be it a situation, person or object.

Last week, as many people will know, I was missed off as a speaker at a conference. I was due to open the afternoon session and was forgotten. The omission was outrageous and unforgivable and the chair should have apologised as soon as she realised or as soon…

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When your memory lets you down……

Source: When your memory lets you down……

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Why are Scotland ahead of the game and the rest of us lagging behind? Part 1.

Dementia and employment – a great blog from Wedndy about her experiience and how other people with dementia and carers have coped – or not!

Which me am I today?

I know that even Scotland have a long way to go but they are so much further on than the rest of us and I don’t understand why? Is this my imagination or reality?

During August I had the pleasure of spending 2 days at the University West of Scotland in Hamilton near Glasgow. I was there to speak at the conference with Dr Louise Ritchie. I took part in her research Project while I was still at work around the challenges faced by those with dementia in their lives and still at work.
Louise met me at the station and we had a great catch up in the car. The sun I’d ordered to get there ahead of me had arrived as planned and Louise used her air con for the first time this year! They’d only just turned off the heating in Scotland last week, such has been…

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Dementia: The One Stop Guide – an essential handbook for everyone with an interest in dementia

Dementia: The One-Stop Guide: June Andrews.

I wish I’d had this book when I first came across dementia. In plain English and a lovely human down to earth style, Professor Andrews has written a practical guide that will be an invaluable resource for everyone affected by dementia. I love the practical focus: how to stay well as long as possible and avoid going downhill faster than you need to. That’s the reality of the challenge of dementia for people who have it, who worry about having it, carers and professionals.

Dementia brings many questions and many challenges. Have I got dementia? How can I stay in my own home and live independently as long as possible? I’m worried about my Mum’s memory, what do I do? For many of us, it’s a lonely journey, lurching from crisis to crisis, making it up as we go along, feeling lonely and unsupported. This book will help us get through, to take control and help us stop seeing dementia as the end of a useful and meaningful life. It doesn’t have to be.

Dementia: The One Stop Guide brings together science, practice and the lived experience of dementia to guide the reader through many of the ups and downs that living with dementia brings and provides practical realistic suggestions for what to do.

Quotes from people living and working with dementia made me laugh, made me cry, made me grind my teeth with frustration and, most importantly, helped me realise I wasn’t alone. Hearing the voices of people who have dementia is particularly powerful, giving an insight into what dementia is really like, starting to break down the stigma and barriers that can be as damaging as the disease itself. Helping us see a person with choices and options not the helpless victim or sufferer.

You can see how to reduce your risk of dementia and how to take control and start making plans if you get a diagnosis. Of course none of us know the moment or what lies ahead, so reducing the risk and planning for our older age are things that are worth doing whether you’ve got dementia or not. Theres information on things from getting Power of Attorney (which everyone should do, none of us know the moment) to how to make your house dementia friendly so you can stay there longer (simple suggestions that won’t make your house look like a primary school).

If I had this book I know I’d have fought harder to stop my Dad getting anti psychotics and I’d have been much better equipped to stop the hospital admissions that we all want to avoid. Trying to get my parents out of hospital when they no longer needed treatment was incredibly hard and as a result of their protracted stays, my  Mum and Dad went downhill much faster than they needed to. This book will help you challenge decisions and sheds some light on the real drivers of ‘bed blocking’ in the NHS which is so unfairly blamed on older people.

The bit on working out the system is a bit frustrating – every part of the country, every areas seems to be different, it’s hard to see the logic behind the way things work. But that I’m afraid simply reflects the way the system works. It does help to know that it’s not just you being thick and there are useful hints about how to keep your head above the choppy waters of our health and social care system. Our politicians and policy makers should read that section and work out a better way of doing things – please.

With the help of this book, you can plan ahead; get practical ideas that will help you or the one you love or support live happily and independently for longer with much less stress all round. For people with dementia and carers it will help you have more confidence dealing with professionals and it does help to know you’re not alone in feeling confused, invisible or frustrated. It will help you take control and keep control.

If you’re a professional or volunteer working with people with dementia, their carers and families, this will help you too. It will show how important you are to making life good for people living with dementia. How the way you treat them and their carers can make a massive difference. It can also help you raise awareness and support people better too.

This book is a resource for everyone and if I had my way it’d be in every library, every surgery, every day centre and care home and every one living with dementia would have their own copy. Simples.

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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!


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Taking control with Power of Attorney

The Age Scotland Blog

Age Scotland’s Power of Attorney Project Officer,  Rebecca Dickson, explains how, by drawing up a Power of Attorney, you can retain control and a higher quality of living if you ever become unable to make decisions independently. 

Most services within charities, the NHS and businesses are moving towards a more person-centred approach in what they do, so all decisions about you and your life should be guided by your wishes and with your best interests in mind.

A Power of Attorney can help keep you at the centre of those decisions if you become unable to make decisions for yourself.

As part of Age Scotland’s Power of Attorney campaign, we are asking you to think about what it is that makes your life yours. What is important to you? What decisions do you make in your daily life that need to stay the same if you could not make them…

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