Over the years, it has come to my attention that others speak about me as one of the #DementiaLanguagePolice. There are many of us around the world, and we constantly have to put up with being labelled sufferers of dementia, even when most of the time, we are more often suffering because of this label, […]
Fantastic work by DEEP, looking forward to the next one!
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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Oh Wendy, I can’t believe it , that’s awful. Is there anything we can do to Help?
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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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 …
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.
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.
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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Dementia and employment – a great blog from Wedndy about her experiience and how other people with dementia and carers have coped – or not!
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: 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.