‘It’s about unleashing, not controlling’

On 26th June, the Health and Social Care Academy hosted ‘Emphasising Humanity over Bureaucracy in Social Care‘; an event that explored what emphasising humanity looks like in practice, not just for those receiving care but for those providing it. 

 William Kløverød Griffiths Policy and Information Intern, Dementia Carer Voices spoke at the event about the work of Dementia Carer Project and the emerging themes from the pledges that have been gathered. In this blog William writes about the You Can Make a Difference campaign and the importance of celebrating the kindness of people with dementia, their families and carers.

President of Institute for Healthcare Improvement, Don Berwick, has been credited with saying “The heart of improvement is not in controlling, it is in unleashing.” For me this really sums up the work of Dementia Carer VoicesYou Can Make a Difference’ campaign. The work we do is about unleashing not in controlling what people do, their messages and their stories.

The campaign is about celebrating and unleashing the kindness and dedication of people with dementia, their families and carers. It is to emphasise that they are equal partners in the care they receive. To this end we collect the stories and experiences unpaid carers have in providing care to their loved ones. Dementia Carer Voices are building a range of multi medium case studies, asking people what matters to them. It is our hope that these will provide useful evidence about the lived experience of the lives of unpaid carers. In that regard, we hope to be a platform to unleash the messages of unpaid carers.

youcanmakeadiff

The project also shows the lived experiences of people with dementia, their families and carers to those who work in the health and social care system. It is a difficult and underappreciated role that health and social care staff do every single day, day in and day out, but it is essential to the health and wellbeing of millions of people. Thousands of people come into contact with NHS Scotland every day, an estimated 37,000 people living in care homes in Scotland, and many more receiving home care visits. If our campaign can unleash some compassion, care and consideration into every one of those human contacts, then we will make our health and social care system better.

So the work we do at Dementia Carer Voices is about unleashing the passion and kindness of unpaid carers. It is about those people who sit by our beds, knock on our front doors and who we speak to on the phone. It is about the people who treat us when we are unwell, about those who offer kindness when we are vulnerable and are able to make a difference in people’s lives. To all those who follow the five must dos of caring for someone, and place the person at the centre of their care.

nothingaboutmewome

When I first joined this project a little over two months ago, I took out a selection of the pledges we have received over the years. Just over 13,000 people have made a personal pledge to make a difference, giving people the opportunity to commit to, to share and celebrate the difference they and we can all make every time we meet someone. That is what this project is about, it is about unleashing the voice of people with dementia, their families and carers. These are people seldom heard, but with our project hopefully gives them the chance to express themselves and take this message to people who make policy.

Dementia is everyone’s business. It is not about buildings or organisations, it’s about the people within and the people we meet, on every occasion it’s about people and relationships. It’s about the life and love stories of families all across the county. So I truly hope the people the pledges, the life and the love stories are about unleashing what matters, who matters and about unleashing the parts we can all play in every moment, every day and every time.

If you would like to learn more about the project, or to sign up to our mailing list, please email dementiacarervoices@alliance-scotland.org.uk

@WK_Griffiths
@DementiaCarerVo

 

 

 

 

 

 

 

Ffion’s Story

Dear Tommy

On Monday the 7th March I talked to the children and teachers at my school in our school assembly, I told them about your work, your lovey mum and your #Tommyontour. I also showed them one for my personalised dementia pledge trees. I have been making these pledge trees for my mummy’s work friends I make a different one for each person, I put their name on it and l do my signature, the person then writes their own pledge on the tree. I hope my trees make a difference to people who live with dementia.

My lovely pops (grandad) had dementia and l would like more people to undgrandaderstand dementia and always be nice to people with it, my pops always put his thumb up when things were OK. He was so kind he would give some of his food to his favourite blackbird the blackbird visited every meal time. My mummy misses pops a lot.

Here is a photo of my mummy with pops his thumb is up.

From, Ffion Age 9 from Shropshire.

To find out more about how to make a pledge visit the ALLIANCE’s Dementia Carer Voices website

The Heart of the Matter

Christy Ringrose, a student at the University of the West of Scotland and some of her classmates have taken inspiration from the Dementia Carer Voices Campaign and produced an album of songs from the pledges made to the campaign so far. Christy shares her blog now with the Academy.

Since the moment I met Tommy Whitelaw from Dementia Carer Voices on the train, I felt like he genuinely cared about ME, and was interested in who I am. This is caring. It makes you feel special and valued. Everyone should feel like this, whether they are losing themselves in an illness, or using all of their time caring for others.

Read More “The Heart of the Matter”

Do Not Ask Me To Remember

Do Not Ask Me To Remember,
Don’t try to make me understand,
Let me rest and know you are with me,
Kiss my cheek and hold my hand.

I am confused beyond your concept,
I am sad and sick and lost,
All I know is that I need you,
To be with me at all cost.

Do not lose your patience with me,
Do not scold or curse or cry,
I can’t help the way I am acting,
Can’t be different though I try.

Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me until my life is done.

My Mum

My Mum lives with me, my Dad, husband and two children aged 6 and 9 years. She also lives with dementia.

Mum and Dad came to live with us in South Wales just after Mum was formally diagnosed, 3 years ago – there is one thing certain about dementia, it isn’t going to get better so we knew planning for the future was essential and taking a team approach to caring for Mum meant we could support each other. Mum had been ill for a long time but I suppose, like us, medics hadn’t considered a dementia in someone so young. Looking back I remember the first signs of Mum’s memory loss when she was in her mid 50’s.

Read More “My Mum”

My mum; I just miss you so

I just miss my mum so much. I have been pottering around the house all morning as I do most weekends and evenings and there is a feeling of great emptiness in this house and in my heart.
I don’t miss dementia – dementia does not define my mum. My mum was magnificent kind and caring but there is no escape from all dementia brought to mums life and mine as a son to witness

Read More “My mum; I just miss you so”

Inspirations #MeandMyMum

Mothers, grandmothers, aunts and other females in our lives will be admired on March 15th 2015 for Mothering Sunday. The day of the year where we say thanks to the ladies that have inspired us and taken care of us, through thick and thin. I thank the females in my life everyday if I can. But I  make sure that they know how I feel about them. I have three inspirations in my life – my mother, my grandmother and my sister. I have other females in my life who I am inspired by and admire but I don’t want to make this post go on forever!

Read More “Inspirations #MeandMyMum”

I have learnt a lot from my mum

Chief Constable: Greater Manchester Police,  Peter Fahy

Like many people I only became interested in the issue of dementia when a member of my own family (my mother) was diagnosed with the illness. This started a journey which many carers travel on, a journey of some pain and confusion, sorrow , impatience, challenge and discovery and yes some laughter and lots of love. To be fair most of the people we have dealt with have been wonderful and very caring but dementia turns upside down many of your existing assumptions and ways of doing things as you go along the journey of switching from your mother caring for you to your mother being the one who needs caring for and the one who is vulnerable.

Read More “I have learnt a lot from my mum”

Knit to Share, Knit to Care

Someone asked what prompted me to set up Knit to Share Knit to Care so here we go…

During a recent visit to a care home I witnessed a very fragile frightened lady with Dementia being brought in for a visit prior to being admitted. She was angry, scared and very vocal, bordering on violent. A staff member gave this lady a simple doll…the transformation was just incredible. The lady sat down, calmed down and began chatting to the doll. She accepted a cup of tea and kept the doll close by her all the time chatting to it.

Read More “Knit to Share, Knit to Care”