At the time that my Mum was diagnosed with vascular dementia, I looked at her and thought to myself “it’ll be okay, we’ll get through this.” What I soon discovered as a carer however was the unpredictability of the condition, constantly forcing us to adapt to new challenges. Many days I would wake up to discover that everything we had grown accustomed to had suddenly changed again.
I often wondered whether the struggles I faced were mine and mine alone, and how other carers who had been through the same journey as I was embarking on had managed to cope. This was why I decided to raise awareness of the condition by collecting letters from people across Scotland caring for a loved one living with dementia. The hundreds of letters and life stories we received made it clear that the challenges facing me were far from unique to my own situation. Every letter had the word love in it, but all too often this was matched by a sense of loneliness and isolation.
Reflecting on the carer voice is a powerful tool in helping to understand the challenges that need to be addressed in supporting people living with dementia and their carers. This is something I am passionate about promoting through the Health and Social Care Alliance Scotland’s Dementia Carer Voices Project, which engages with health and social care professionals, and wider society to raise awareness of the impact of dementia on families and the importance of empowering carers in carrying out this role.
In February 2014 Dementia Carer Voices embarked upon a pledge campaign entitled “You Can Make a Difference”, which calls on 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.
A total of 700 pledges have been received so far from staff up and down the country, including Paul Gray, Director General of Health and Social Care
“I pledge to listen to carers and to learn from what they say, and to share what I learn to improve services.”
and Chief Executive of NHS Scotland and Anna Fowlie, Chief Executive of the Scottish Social Services Council.
“I pledge to make sure social service workers have skills and values to work with people with dementia and to take action on failure.”
The pledges highlight the positive steps we can all take to make a difference for people affected by dementia through focusing on the person rather than the condition and taking time to listen and finding out what is important to people with dementia and their carers.
“I pledge to view the person I care for as all that they have been, they are and all that they can be.”
“I promise to be the ‘human listening, understanding ear’ every time”
The pledges are catalogued and published online to share learning across the sector and empower carers themselves by making them aware that their voices are being listened to.
Giving her perspective on the ‘You Can Make a Difference’ campaign, Professor Fiona McQueen, Executive Nurse Director with NHS Ayrshire and Arran said;
“Listening to Tommy giving a first-hand account of the struggle and also joy of caring for his mum is just the catalyst we all needed to effect change. My pledge is to provide the leadership and provide the fuel for the flame of passion that is being lit every time someone hears Tommy speak. The pledges that we’re getting in Ayrshire are uplifting. Commitment from bedside to Board; action that will change the way services are shaped, to actions that will change the way we care for people.”
Changing practice and culture will be hugely difficult. Over time, we will follow-up with those who have made pledges to identify enablers and barriers to changes in culture and practice being implemented and sustained.
It is heartening to see that so many of our colleagues and partners from across the health and social care sector share our commitment to listening to voices of experience and making a real difference for people living with dementia and their carers.
Tommy Whitelaw is Project Engagement Lead with the Health and Social Care Alliance Scotland’s Dementia Carer Voices Project. You can find out more about the project by visiting http://www.alliance-scotland.org.uk /dementia-carer-voices/ http://www.dementiacarervoices.wordpress.com