2016 is a big year both personally and for our Dementia Carer Voices Project. This will be my 5th anniversary campaigning, starting from my house when caring for my beautiful Mum, Joan, who had Vascular Dementia and sadly passed away September 2012.
This will also be the 5th anniversary of my. Friendship and collaboration with ALLIANCE Director and my Mentor Irene Oldfather who's passion I Share to make a difference
I started campaigning whilst caring for my mum, Joan, back in 2011 and this has continued with my new role as Project Engagement Lead at Dementia Carer Voices at the ALLIANCE Scotland, a three year Scottish Government funded project (in part to harness the work I started whilst caring for my mum)
The photo below was taken for the campaign launch January 31st 2011
At the time my Mum was diagnosed with Vascular Dementia, I thought to myself “it’ll be okay, we’ll get through this.” What I soon learned as her carer, that dementia was an unpredictable illness which brought many challenges and forced us to adapt to ever-changing routines. Many days we would wake up to discover that everything we had grown accustomed to have suddenly changed again.
I 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. An issue that struck me during my journey of caring for my mum was the lack of awareness and understanding of dementia and the way in which we perceive this illness as a wider society.
My door was always open but no one walked through it, people didn’t come to visit us anymore and I truly believe that was down to the stigma surrounding the illness. Everyone affected by dementia has a unique story to tell and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.
This was the basis behind my first venture in to the world of awareness raising – the campaign, which involved collecting life story letters from people across Scotland caring for a loved one with dementia. I felt passionately that no one should have to face the confusion, loneliness and isolation that we felt. On 6th June 2011 I began my walk to collect life story letters detailing the experiences of individuals caring for a loved one living with dementia.
Since then, we have engaged with thousands of carers through my and now as Project Engagement Lead with the at the taking the life and love stories of carers who have written to us, carers we have met in person, spoken to on the phone, heard from through email or through our . As a team we have shared these with health and social care professionals, students, MSPs and members of the public, to raise awareness of the impact of dementia on families and the importance of empowering carers in carrying out their difficult but vital role.
Our 'Make A Difference’ Campaign and Tour started back in 2014 with 187 talks and continued over 2015 with 205 more, reaching 42,000 people in person at the talks. This has led to 7,500 people, Hospitals, Universities, Colleges, and Organisations pledging to make a difference for people living with dementia, families and their carers.
Many journeys have been made along the way by train, bus, and on foot. There have been early starts and late nights, but every single journey has been worth it, the many days and nights traveling home with a smile in my heart, thankful for the people I have met, the care I have witnessed, the desire and commitment to make a difference every day for others.
There are too many to mention in person and all the great initiatives I’ve seen along the way, but the thing that stands out is people, over and above polices and strategies. It is people who change lives. I am lucky to work with amazing people, Irene, Ian, Laura, Ashleigh and all the team at the ALLIANCE, and feel so lucky to work with them and to have met so many people over the years.
Thank you for all you do to make a difference for others and thank you for making a difference to my life.
A special thanks to First Minster Nicola Sturgeon for meeting my mum and holding mums hand 4 weeks before my mum sadly passed away