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Thursday, 20 July 2017
Dementia Carer Voices July Newsletter in Now available to Read or Download
Saturday, 15 July 2017
GuestPost via Dr Claire L Copeland - American Delirium Association Conference, June 2017
We are kicking off the week with a guest blog from Dr Claire L Copeland, Consultant Physician in Care of the Elderly and Stroke Medicine at Forth Valley Royal Hospital. You can follow Claire on Twitter at @Sparklystar55 Lets see what Claire has to tell us….
American Delirium Association Conference, 4 – 6th June 2017
Nashville
This was my first American Delirium Association conference (#ADS2017). Making it more exciting was the prospect of visiting Nashville, the home of country music (I’m a huge Garth Brooks fan but don’t tell anyone……!) A pre conference educational workshop was held on the Sunday. The basics of delirium education were gone over from its definition to what causes it.
Dr Heidi Smith spoke about how delirium ‘is often invisible’ in the sleepy person. This was later described as ‘pathological sleepiness’. You see the concept of describing a person as ‘a bit quiet’ or ‘not quite themselves’ is woefully inadequate. Many fail to appreciate that brain neurones (cells) are slowly dying.
Now imagine that same person has dementia. You want that person to hold on to as much brain function for as long as possible right? Well, the longer a delirium goes undetected the more harm it can do. The less likely they are to come back to their normal pre delirious selves. We already know that delirium accelerates cognitive decline and yet we remain poor at recognising and treating it.
Heidi went on to describe how the delirium assessment is a bit like ‘knocking on the door’ of the person’s brain. Are the lights on or off?
We learned that all kinds of things go wrong inside the house (or brain) of the delirious person. The brain is wonderfully complex however when the fog of delirium sets in it all goes a bit haywire. There can be too much of certain brain chemicals making it a bit excitable when it wants to be calm. It also doesn’t have enough of the calming chemicals to counteract this effect either.
With this in mind is becomes obvious why we should be describing the person with delirium as suffering acute brain dysfunction and not as often happens as ‘pleasantly confused’.
There is nothing pleasant about delirium.
While much of the conference focused on older people it is important to remember that delirium can affect people of any age. We were shown videos of a toddler with a delirium (the sleepy, hypoactive kind). We were also made aware of the shocking statistic that only ~40% of people (mean age 59yrs) get back to work after an intensive care admission complicated by delirium.
The talk that had the biggest impact on me came from a older gentleman who described his experience of hospital acquired delirium. When asked what could we, as healthcare professionals, do better? His answer was simple ‘come into my world’.
That for me summed up the conference. For 3 days we came together from all corners of the world to try to better understand what causes delirium and what we could do to make it better.
Some of this is a need for more research.
Much of it is simple awareness and education. This education is not just for healthcare professionals either. Families and carers of those with dementia need to know about delirium as soon as they are told of the diagnosis. We need to involve them in sharing their experience, to be able to enter their world and ensure that we are doing everything we can to make it better.
We need every healthcare institution to have a robust training and education program for its staff. We also need all our undergraduate medical, nursing and AHP schools to embed delirium into their curriculum.
You too can make a difference. World Delirium Day (#WDAD2018) is happening on14th March 2018 and I’d encourage every one of you to get involved. Share your experience and ideas by emailing or tweeting me. Ask your place of work what they’re doing to raise awareness of delirium.
Let’s think delirium!
Friday, 14 July 2017
My Mum I just miss you so -
Hi
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 that dementia brought to mums life and mine as a son to witness.
I miss both mum and Dad ,Over twenty years ago I started a life touring the world, making great times and great mistakes and even from a distance shared the great times with my parents.
I am greatful for the support,advice and help they gave to the msitakes and struggles I personally faced along the way. I was a lucky boy to have such parents
Never imagining that 20 years later my mum would be diagnosed with dementia and I would become a carer.Now there is a description that's sits slightly uneasy .people keep saying " you cared for your mum " that is only half the story .Even with all mum faced she always cared for her son, on the days we where both struggling on the days I was falling apart, on my knees and broken,this wonderful mum could make it all better with a squeeze of my hand or the love from her eyes
That's what mum's and dad's do, no matter what they face they make it better for their children ,no mater how young or old their children are ,no matter how far or close they May be
And I miss that so much.I miss the support ,kindness that squeeze of the hand the love and care in mums eyes
You took much away dementia but never the love and care a mother had for her children and for all she met and knew.
I just miss you mum
Tommy
Thursday, 13 July 2017
You Can Make a Difference Campaign - Get Involved
Dementia Carer Voices
You Can Make a Difference Campaign
“Carers tell us that a little bit of time, listening and understanding can make an unimaginable difference during what can be a very difficult and lonely journey. No matter what your role, you have the potential to transform the lives and experiences of people with dementia and their carers.” Tommy
Make a pledge – Make a difference
How will you make a difference?
We aim to ensure that carers have their voices heard, their rights and caring role are recognised by those who play a part in the journey and that real life experience influences health and social care policy, culture and practice. Having heard the stories of Tommy and other carers we want to ask those working in Health and Social Care services:
Dementia Carer Voices began its flagship ‘You Can Make a Difference’ campaign in February 2014, which has gone from strength to strength. The campaign calls upon health and social care professionals to reflect on the lived experience of people affected by dementia, and identify key messages or actions from their stories that they can take away and apply to their everyday practice to improve outcomes for people living with dementia and their carers.
The campaign has had an extensive outreach programme, engaging with an estimated 80,000 people over the course of 600 talks since February 2014. As the campaign continues this year, this total is set to increase throughout 2017.
This campaign, primarily targeted at health and social care professionals and students, has travelled across the country with the simple message that we can all make a difference, no matter what our role. The highly translatable nature of the campaign has encouraged people from all backgrounds to participate, and has meant that along with professionals and students, MSPs and members of the public have readily pledged their support not just to the project but to the estimated 788,000 unpaid carers in Scotland.
The campaign seeks to empower individuals to make a positive difference in the lives of people living with dementia, their families and carers. It aims to encourage people to do what they can to make their journeys easier, often in simple ways. Perhaps the most common pledge is
What one thing will you take away and change in order to make a difference to the lives of people with dementia and their carers?
You can send your pledge to us via email to dementiacarervoices@alliance-scotland.org.uk. We will be collating the pledges and publishing them here on the home page of this website
so please be sure to let us know your name and role. If, however you prefer for your pledge to remain anonymous, please indicate this in your response.
Thank you for the support for the campaign, and helping to spread the message that “we Can All Make A Difference.”
Monday, 10 July 2017
Dementia Carer Voices is going to the Scottish Parliament to celebrate the over 14,000
This week Dementia Carer Voices is going to the Scottish Parliament to celebrate the over 14,000 we have received over the years on our ‘You Can Make a Difference’ campaign and have conversations about the key messages within our new publication with MSPs.
As part of the campaign we have previously spent a few days at the Scottish Parliament, where many MSPs made their own personal pledges.
We are going from Tuesday to Thursday this week and will be presenting at a stand in Parliament to promote our project and engage with parliamentarians about the work that we do. On Wednesday MSPs will debate Dementia Carer Voices’ work and discuss the findings of the publication we have delivered.
You can watch the debate via this link on the day at 5pm ON WEDNESDAY jUNE 28TH
In addition to our stand, we will be hosting a lunch on Thursday, which be a chance to discuss our latest publication and have conversation with people who have made the pledges who will be coming along to the event.
See here for our updated case studies of our tour to universities, colleges, hospitals and care homes.
Press Release
Parliamentary Exhibition and Event 27th – 29th June 2017: Press Release
Dementia Carer Voices are bringing the voice of 14,000 health and social care staff and students to Parliament for a two-day exhibition and event. Thanks to sponsorship from Jackie Baillie MSP, Dementia Carer Voices (DCV) have been given the opportunity to exhibit information at the Scottish Parliament on 27th – 29th June. There will also be an event in Parliament on Thursday 29th June to discuss the content of the latest DCV report which assesses the impact the ‘You Can Make a Difference’ campaign has had since it launched three years ago.
The ‘You Can Make a Difference’ campaign has involved an extensive outreach programme of over 600 talks delivered to health and social care professionals and students throughout the country, to engage with individuals at every stage of their career. This has resulted in over 14,000 pledges being made by practitioners and students to improve experiences for caring for individuals. These pledges are often small changes, but can make a crucial difference for people who are at their most vulnerable. Some pledges that have been gathered include:
- “I pledge to make a difference as the future nurse to listen to the carers and patient. To give them the best support and care they needed and not to make them ever feel isolated.” (Student nurse)
- “I pledge that I will see the person with dementia as an individual who has lived their life from childhood, to falling in love, to having a family and growing old, to understand their story and how they would like to be cared for.” (Nurse)
The campaign has showcased the impact of personal stories; the recognition that all of us are individuals and not simply ‘patients’ or ‘staff members’, and that each of us has the ability to make things better for other people, both in our personal and professional lives. The DCV exhibition will showcase the ‘You Can Make a Difference’ campaign and crucially the pledges that have been gathered to date, along with the journey that the people who have made them have been on.
Irene Oldfather, Director the ALLIANCE said: “Dementia Carer Voices is delighted to return to Parliament to share the learnings of our inspiring campaign to make a difference to the lives of people with dementia, their carers and families. Discussing and debating the carer experience is to be welcomed as a way of increasing awareness of dementia and the carer journey.
Carers of people with dementia describe the journey as an emotional roller coaster which is both rewarding and incredibly sad as you lose a little of the person each day. The ALLIANCE welcomes this debate and the commitment of MSPs across the chamber to promoting the carer experience.”
- “My pledge is to “leave no stone unturned and no door unknocked” in pursuit of a Better Tomorrow for people with dementia and their carers”
Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices said: “I would like to thank MSPs for their on-going interest and taking this opportunity to listen to the thoughts, feelings and experiences of carers. It is imperative that we raise awareness of the impact of dementia on families, and the vital role played by carers, so that nobody else in Scotland has to go through the caring journey experiencing the loneliness and isolation that we did.”
Ends
Further information
More information on the project can be found at www.alliance-scotland.org.uk/what-we-do/projects/dementia-carer-voices/ or alternatively at www.dementiacarervoices.wordpress.com/where the full list of pledges can be accessed.
For any questions related to the exhibition, the event or the report, please contact Irene Oldfather, The ALLIANCE Director irene.oldfather@alliance-scotland.org.uk 07713 329752 or Tommy Whitelaw, UK Engagement Lead, The ALLIANCE, tommy.whitelaw@alliance-scotland.org.uk 07921 395712.
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