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Dementia Friendly communities

I have always wondered what a dementia friendly community looks like....or rather feels like. I believe it should feel inclusive, welcoming, non-judgemental and understanding...ok like any friendly community actually! So once again, what is good for people living with dementia it turns out benefits everyone. Perfect.

With this in mind when working with Lucy Frost, Dementia Lead at Brighton & Sussex University Hospitals, we felt that if we were going to run some inspiring events for doctors and nurses, let's open them up to the whole community. So we are currently running screenings of Alive Inside, the Sundance Award winning film about the power of music in dementia care.

So inspired were we by the energy and enthusiasm in the room that immediately after the first screening we started a campaign to get people to donate old ipods and ipads so that we can create personalised playlists and image banks (visual arts is more my area, but hey the arts are amazing in all forms and I use music too so let's do both!) More info here

With www.dementiadirectory.com gaining momentum this idea of creating dementia friendly communities - in both real life and virtually - is something that I believe is really important. Supporting and inspiring each other is vital with the challenges facing care, for professionals and relatives alike.

So join us at a screening, or sign up to be part of Dementia Directory, and be part of our community and help us grow it.

#dementia #community #alzheimers #art #music #musictherapy

Dementia Innovators at Congress...

At the end of the Dementia Congress I’m sat in a small circle in a stark room with an air con unit that keeps clunking and clicking as if something is trapped inside. We have stayed behind after listening to Andy Bradley talk about self-compassion, something that is often lacking in care work. The environment could not be less inspiring but this small group - a care home manager, Admiral Nurse, culture change consultant, care home dementia lead and myself - want to assist in a project. The resulting sharing of ideas, teary appreciation and exciting collaborations seem a very appropriate ending to the last two days.

Yet another report hit the headlines last week with the Care Quality Commission revealing that 90% of hospitals and care homes visited were providing some inadequate or poor dementia care. That is not good enough, but we are far too quick to blame the care workers, many of whom are untrained and battling within a broken system. We set them up to fail. We need events like Congress – where dementia care specialists from all over the UK gather - to provide some answers. I arrive looking for practical solutions and inspiration to share with those on the frontline.

Aware of the packed agenda, my colleague Alise Kirtley and I arrange a dinner to create a dialogue on positive disruption in dementia care. A group of innovators from both inside and outside the sector coming together to talk of change. We want to promote thinking differently; we want the removal of barriers and the discussion of collaboration. This is just the start. We want more people to join the debate – it is not about closed groups or cliques - dementia has no boundaries so why should we? We want action-based ideas that lead us somewhere positive.

The next morning I head off to my first session and discover it’s about person-centred restraint. This seems perfect as it will provide practical inspiring solutions to the issues in dementia care - tackling the ugly stuff which nobody wants to talk about, but which is sometimes necessary in dementia care. If we can find a person-centred solution this will help those currently left exposed without training. I am further encouraged when the presenter suggests that restraint can sometimes be avoided by adapting clothing – such as putting Velcro sides in someone’s favourite trousers. Brilliant – a simple, cheap solution to a tricky situation. The presentation then leads on to a very considered, thorough procedure to use if someone needs restraining: an elbow hold that looks like you are just escorting someone. I’m inspired and relieved that this is discussed. As I leave the session I chat to a care home manager who looks horrified and states, “we would never do that”. My heart sinks. I know that care home well. Currently they have no guidance for staff on restraining people. Apparently that is better than an evidenced, person-centred solution that involves professionals and family. Fear. It is a common theme over the two days.

The next day and a half take me from frustration to joy and land me in a place of exhaustion but tinged with hope. Care Minister Norman Lamb talks of support for workers. There are rooms full of people applauding the great work of the many care workers, and I wish more of them were present to hear it. The new Care Certificate sounds hopeful as it at last recognises the need for basic training for all. Jeremy Hughes, chief executive of the Alzheimer’s Society, talks of achievements and partnership working. If you could pass that on to your local teams Mr Hughes, we would be grateful. Last week when I asked for help connecting people with dementia to a free programme I’m facilitating at Brighton Museum, I was told that was not possible as it is not an Alzheimer’s Society initiative. This is a story I hear again and again and it is not good enough. Apparently, as my social enterprise offers training, I am competition. Words fail me. Mr Hughes acknowledged in his speech that those who are most vulnerable are being cared for by those who are among the worst paid in society. That is wrong - I absolutely agree. But we need to stop pointing out what we all know and act to change it.

My frustration came from ‘sales pitch’ sessions given by some universities on their newest training courses. There was no indication of what the training was; just why people should chose it. The following Cognitive Stimulation Therapies presentation aimed at family carers was great, offering simple accessible activities for those looking after loved ones at home (http://www.cstdementia.com/page/the-manuals). The session hosted by people living with dementia and their carers was a total inspiration, reminding us of why we were there. With their insight and wisdom I just hope they have been consulted on the new training programme. Dulwich Picture Gallery & The English Touring Opera’s project was a joy to hear about. It involved creating and performing an opera inspired by art and there was no underestimation of ability here. I challenge you to watch their film without shedding a tear (https://www.youtube.com/watch?v=ZK8xrpGPKeY) Motivation surely for dementia groups and care homes to get on the phone to their local gallery and see what partnerships could be formed. Finally, a cross-Atlantic collaboration between a fellow social enterprise and an American institute. The use of improv as a way of communicating with people with dementia is something I use in my training and now, following a three-year research project, a four hour training programme can be done online at www.scriptedimprov.com There are plenty of people here who are dedicated to improving quality of life for both people with dementia and those who care for them – as a quick search of #dementiachallengers on Twitter will show. We all want to create safe spaces for carers to shine, provide them with the tools to do it and offer skills to reduce the fear.

Finally, a word of appreciation to Rhianna, the dementia care worker from Thanet Mental Health Unit who saved up to pay for her own ticket (which added up to about £500). It absolutely should not be the case that you need to do this, but your commitment is a total inspiration. Thank you.

#DEMENTIA #alzheimers #alz #care #care homes #social enterprise #social care

Engage & Create are chosen by Legal & General's SE-Assist programme. Read the full article here:

http://www.theargus.co.uk/business/11446780.Helping_out_socially_responsible_business/

#social enterprise #DEMENTIA #alzheimers #alz

The Neurochemistry of Positive Conversations

So the article below is why Engage & Create is based not around 'making' art but on TALKING.

It is vital people with dementia have the opportunity to discuss and debate, even if we are not always clear on the detail of what is being said, one thing is for sure... we aim always to make people feel heard and understood! And now we know a bit about the chemistry behind it all....

http://blogs.hbr.org/2014/06/the-neurochemistry-of-positive-conversations/

#neurochemistry #positivity #conversation #DEMENTIA #alzheimers #talking

The Do Lectures adventure

Picture from thisisnessie.com

So last week I found myself in a field in Wales with no idea really what was going to happen. When I got offered a place at Do everyone I know said 'The Do Lectures will change your life'. I wasn't so sure but was up for some time in the country with awesome people. Four days later and I found myself standing on The Do stage in my red wellies giving my own mini Do Lecture!

Life changing it was. There is something about that place, or is it all the mind blowing people all gathered in one place that is magical....I do not know. What I do know is that I feel very lucky to have been part of it. I need to time to process it all. I'm still exhausted, but here is what I said in my mini Do Lecture for those to whom I promised to write it down....

"It has occurred to me in the last week that I went through a process to get to where I am and it goes something like this:

THE DO PROCESS

CAN'T DO - This for me, was the 10 years I sat unconsciously at my desk drifting

WON'T DO - The realisation there must be more to life, but paralysed to do anything about it

LITTLE DO - Taking small steps towards making a change

SCARY DO - Jump in, both feet, red wellies and all. No more excuses. Just do.

About eighteen months ago I was invited to teach some painting in a care home. As I walked through the door I was confronted by an unpleasant smell, silence in a room of thirty residents and the odd scream. This was a dementia specialist care home and nobody had told me. The need was quite clear - people enjoyed creativity but wanted to talk; be heard and understood. So I developed Ignite Sessions, cognitive stimulation workshops using artworks as the stimulus, and method to deliver them so even people living with more moderate/late stage dementia can be part of the conversation.

So I'm sure a lot of us have gone through The Do Process, maybe without even knowing it, but it occurs to me as I stand in a room of amazing Do-ers changing the world, that Little Do's are crucial. It is these that lead to the big stuff.

So I urge you all to go home and do a Little Do in your community. Some elderly people go a month without a visitor. Go around to an elderly neighbour for a cuppa, cook an extra portion of dinner for them, call your nan for a chat or take what you DO to your local care home...show them how to use Skype to keep in touch with loved ones or just go and have a chat. The Little Do's really do make a big difference."

#dolectures #care homes #art therapy #DEMENTIA #alzheimers

How Women Lead

Following the RSA Brighton event on How Women Lead they asked me to write about the affect of the event on me for their blog...here is my article

http://www.rsablogs.org.uk/2014/uncategorized/rsa-brighton-women-lead/

#women #leadership #DEMENTIA #alzheimers #alz #public health #female #leader

Thanks @JaneDallaway for passing this on. Great short film about the difference between Alzheimer's and dementia

#alzheimers #DEMENTIA #dementia #alz #brain

"Every human being needs to listen consciously in order to live fully..."

Engage & Create takes Ignite Sessions to an acute ward at The NHS Whittington Trust....

This week saw the first outing of Ignite Sessions to an NHS Trust acute ward for the elderly. As it turned out, this was a pretty life changing experience. Ignite Sessions have taken on a whole new meaning now. As well as delivering training to frontline staff, I spent time on the wards with some very sick but wonderful older people.

Ignite Sessions are about using art to stimulate conversation. Usually this is done in small groups. The challenges of a hospital ward with people too sick to move meant doing 1-2-1 sessions at the bedside - a new experience!

Here are some stories from my two days at The Whittington Trust (fyi all names are changed):

Margaret - 80yrs this lady was a true Londoner. She told me she'd never been to an art gallery but was interested in the pictures. We spent an hour talking through the paintings about family. Margaret, who was living with dementia, had some really insightful comments about some of the pictures and some very important life lessons to share with me 'buy cheap, buy twice'. So true! At the end of the session she was so excited and said to me 'well I know what I'm doing when I get out of here....visiting a gallery! It's so interesting'......I couldn't believe it, why wasn't someone filming it!! Haha.

Jim - Lying twisted in bed Jim, I was told, had advanced dementia and didn't really speak. Nurses were keen that I tried to communicate with him as they couldn't. As I approached the bed I felt so inadequate with my ipad of artworks. He was barely conscious, what could art do to help this man at the end of his life? Well as it turned out art itself didn't do much, but the mere fact I had a reason to talk to him and ask him if he wanted to look at some pictures started a conversation of sorts. It was more an interaction. He gently grabbed my blonde hair and whispered 'blonde' to me! A word from the man who doesn't speak. After assuring Jim it wasn't out of bottle (!) I wetted his lips with the lollipop looking sponges so we could talk, as he was keen to tell me something. I have no idea what it was. It wasn't important what the subject was. I just stood listening for 15 minutes as his furrowed brow told me all I needed to know...something was annoying him, he was frustrated and wanted to get it out. So I let him. I validated every sound and attempted word. I mirrored his face with my language. Touched his hand to comfort him until he was finally quiet. His eyes were closed most of the time. Art wasn't needed here but this was definitely an Ignite Session - the man who didn't speak didn't stop speaking for 15 minutes. It was incredible.

Robert - At 84yrs Robert was lying pale in bed dozing when I dropped by. He was happy for some company and was a really bright intelligent man, albeit very sick. We talked about the fact his wife and I were both artists, he loved that. I asked if he'd like to look at art with me and said 'that would be so lovely'. He'd told me about family so I chose my module on that subject. We chatted and shared our thoughts and feelings on the artworks. I spent a good 40 minutes with Robert and learnt lots about his time in the middle east and history of the area...fascinating! He did have a cognitive impairment but he is a very intelligent interesting man. As we finished I thanked him for his time and he said 'I'm so glad you came by I feel.....well, stimulated!' Perfect! That is the aim. Cognitive stimulation. I am pretty sure he had a bit more colour in his cheeks too.

Richard - As I walked in to the side room where Richard was lying twisted with a feeding tube I nearly walked out again as he was so so ill I really didn't see how I could help. But of course I marched myself straight back in. Richard was clearly in his last few hours of life and I wanted to make sure he wasn't alone. His family had put a few pictures on the window sill and left some books of poetry. It was shocking to see the framed corporate style portrait photo of Richard, this now tiny man struggling for breath. I introduced myself and said that I had come to share some art with him, but wondered if maybe I could read some poetry instead as there was a book on the side. To my amazement he tried to open his eyes. Bingo! So I flicked through chatting at what was in the book. I found a page turned down so I thought that was a good place to start. The poem was 'I remember, I remember' by Thomas Hood. As I started reading Richard made a noise. He tried again to open his eyes. He was engaged. I then asked him if he'd like to look at some art. Another noise. Yes. So I held the ipad for him to see and started talking through the City in Art series. Derain was a hit. Bright colours, London Bridge, I sensed he liked. Not such a big fan of Boccioni, but more bright colours with Mondrian's Boardwalk Boogie Woogie got another grunt and a long stare. When I'd finished we had been interacting for a good 20 minutes...and I was going to not even try! It was such a privilege to spend that time with him. I left him to rest and he seemed to drift off into a very peaceful sleep.

Here's Richard's favourite poem....never had heard of Thomas Hood, so even Richard at the end of his life taught me something! Thanks I love it :)

I Remember, I Remember

I remember, I remember The house where I was born, The little window where the sun Came peeping in at morn; He never came a wink too soon Nor brought too long a day; But now, I often wish the night Had borne my breath away. I remember, I remember The roses red and white, The violets and the lily cups-- Those flowers made of light! The lilacs where the robin built, And where my brother set The laburnum on his birthday,-- The tree is living yet! I remember, I remember Where I was used to swing, And thought the air must rush as fresh To swallows on the wing; My spirit flew in feathers then That is so heavy now, The summer pools could hardly cool The fever on my brow. I remember, I remember The fir-trees dark and high; I used to think their slender tops Were close against the sky: It was a childish ignorance, But now 'tis little joy To know I'm farther off from Heaven Than when I was a boy.

Thomas Hood

#dementia #alzheimers #hospital #care #care homes #endoflife #student nurse #love

Remember

by Eliot Rausch

Using social media to give people an experience of what dementia might be like....brilliant.......

#DEMENTIA #alzheimers #alz

AGNES & NANCY

In this film about friendship and living with dementia, meet Agnes – struggling to come to terms with her new identity five years after being diagnosed with dementia.

Follow Agnes in her quest for renewal and get the chance to challenge our notions of what it means to have dementia, while receiving a fresh perspective on the condition.

Filmmaker: Anne Milne – http://www.annemilne.com/

#alzheimers #DEMENTIA #friendship #public health #identity

Dementia - A New Mind Set...a talk for NixonMcInnes

So I am doing a talk at this very inspirational company...here are the details...come along......

#NMFirstFriday is back after a seasonal break and we'd love for you to come along on 7 February:

Dementia - a new mind set

Another new case of dementia is diagnosed somewhere in the world every four seconds. Currently there is no prevention or cure. So we have to live with it. But is it possible to live well with dementia?

Artist Rachel Mortimer believes we can. “There is a lot of work to do, and actually it doesn't involve people with dementia.”

At #NMFirstFriday Rachel will talk about a technique she has developed and how the basis of it could impact all of our lives, the work she does in care homes (some of which are neither caring or homely) and some ideas of how creative thinking can bring colour into the rather grey world of dementia care. You can find out more about Rachel's work here.

Join us at NMHQ at 5pm on Friday 7 February for beers and inspiration. Please sign up so we know who's coming.

Hope you can make it, Louise & the NM team :)

*First Friday is all about brain food. On the first Friday of every month we ask a speaker to join us for our team meeting. We drink beer, we eat crisps and we invite in new ideas, new people and new possibilities.

NixonMcInnes

Fit for Digital. Fit for purpose.

www.nixonmcinnes.co.uk

#DEMENTIA #inspiration #alzheimers #art therapy #Arts #care homes

EngAge & Create to work with The Courtyard Arts & Shaw Healthcare

EngAge & Create will be working with The Courtyard and Shaw Healthcare from 2014 to deliver participatory arts projects for older people with funding from The Arts Council and Baring Foundation.

http://www.courtyard.org.uk/successful-funding-for-national-arts-and-older-people-project/

#DEMENTIA #alzheimers #art #care homes #art therapy #old age

My blog for the lovely Gill from Whose Shoes? following this year's Dementia Congress...

#DEMENTIA #alzheimers #art therapy #Arts #care homes

Gerry Harris is 92 and has vascular dementia. Because there are no beds available in specialist care homes he is confined to a psychiatric ward in the local hospital.&

TEDX Brighton - dementia experience

So the last few months have been a whirlwind which involved several events including hosting a dementia experience at TEDX. The aim of this was to raise awareness around what dementia is (and isnt!) and also start a conversation about care homes for the future....do we really want bingo to be the only option of 'activity' if we ever end up in one?! We realise dementia is an individual condition, so this by no means how everyone experiences things, but it helps to understand some of the challenges people might experience. So here are some pics to show you what EngAge & Create has been up to....

#dementia #art therapy #art #care homes #alzheimers #public health

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