What NDCAN means to me...

Joining NDCAN

Mostly people just stumble into things. I had never heard of the National Dementia Carers Action Network (NDCAN) until I became a fundraiser for Alzheimer Scotland. My son led the way by running in the London Marathon and raising thousands of pounds in honour of his beloved granny. She had been his fun granny who had taken him on crazy holidays and trips and inspired him throughout his life. Now, he said it was his turn to show her support as she bravely dealt with her long skirmish with vascular dementia.

My fundraising did not involve running! I helped organise Ladies Lunches and Balls and best of all, a quite glamorous and exciting January Blues Lunch. During one of these events, I was asked to join NDCAN by a member of Alzheimer Scotland’s team. I did not even know the letters stood for National Dementia Carers Action Network but, after my first meeting, I was hooked. Incidentally, I had to leave early as the nursing home called me as my mother was unwell. The problem with being a carer is that’s what you do. It's your priority and often you miss all sorts of other things just to be carer. And you wouldn’t do other.

Being part of the group

I learned NDCAN was not about carers discussing daily problems in their own lives. It wasn’t a support or self-help group, instead I discovered it was all about campaigning to make a difference for others in the same situation – the uphill struggle to find support and help and information for both people with dementia and their carers. 

The bit I quickly liked best was the ACTION part of NDCAN. Immediately on joining the group, your opinion, thoughts and most importantly, experience was absorbed and used to make change. I discovered you could pick the campaigns that appealed to you as most worthy. I remember vividly attending one meeting with Allied Health Professionals (AHPs) talking about HCPC and NEC – I listened to the jargon and thought there is no way I can contribute here as I cannot follow the jargon and language. Well, that is just exactly what is wanted – someone who can say - stop – I don’t have a clue what you are talking about! 

All carers know what its like to feel ignored; to feel they and their loved one are being treated unfairly or inadequately. I have relished being in NDCAN as it has allowed me to join campaigns about issues that left me and my family often rendered speechless and feeling helpless at the time. 

What it has meant to me 

Being an NDCAN member and working with SDWG (Scottish Dementia Working Group) has been one of the most galvanizing things in my life. Alzheimer Scotland promises 'Action on dementia' and that 'nobody faces dementia alone'. I am eager to be part of that.

What does NDCAN mean to me? Apart from having made many friends and enjoyed watching the progress of campaigns, it has helped me to consolidate the rollercoaster experience of being a carer. 

What it can mean for you

If you are currently a carer, especially during these exhausting Covid years, finding time to be anything other than a carer is often – impossible. When you find you have the time and - if you want to make a difference, do please think about joining NDCAN.

If you live in Scotland, are a current or former carer of a person with dementia and would like to join NDCAN in its campaigning and awareness raising, then please contact us at [email protected]