Elaine's Story

Some of my NDCAN work 

I was involved at the launch of the Fair Dementia Care Campaign with my colleague Joanna Boddy, former First Minister Henry McLeish and Professor Debbie Tolson. I did a short TV interview for a news programme, and my mum's story of her journey with poor dementia care was read out in Parliament, all as part of the campaign. This is so important to me as I feel that people with dementia have a long way to go before they have their needs met, as defined by the Charter of Rights. I am currently on Alzheimer Scotland's Human Rights and Public Policy Committee as people like my mum have no voice, and I feel it is important to drive better care. I have met with Dementia Champions cohorts and shared with them my experiences as a carer. The group was made up of occupational health professionals, physiotherapists and registered nurses and the feedback was that they gained a lot from these sessions. I have also worked with Alzheimer Scotland staff to talk about Self Directed Support and how this helped my family. I spoke at a debate at Glasgow Citizenfest and at an Alliance portfolio day. These sessions are always good for networking and meeting others looking to improve the experiences of people with dementia.    

I also took part in a Link Worker day that looked at housing and the implications of living with dementia in older properties. I had many a tale of mum pulling wires out of the wall and pulling radiators off and the measures we had to adapt to keep her safe. 

My favourite part of being an NDCAN member is that I love the ethos of Alzheimer Scotland. We have regular invites to meet Chief Executive Henry Simmons. Our views are listened to and acted upon. For example, Henry asked us how he could improve the Annual Conference. I suggested there needed to be more from a carer perspective, I felt it was aimed more at a professional level. Last year Henry dedicated a whole floor to carers, inviting professionals to give one to one sessions and stands geared up to support the carer. 

When I started with NDCAN I remember feeling overwhelmed at all the information, but I was guided through each meeting and well supported. My first public speech was to a full network meeting and I was nervous, but I was helped by my colleague Bernard. I have done a few more since then and it does get easier! My years of nursing helped, and my managerial skills mean that I am not phased by speaking out in a meeting. 

When I am not doing my NDCAN work I still nurse part time, and I have recently started volunteering with my local 'befrienders', meeting people with dementia who are living alone. I relax by walking my crazy Border Collie along the beach where I pick up gorgeous sea glass and transform it into jewellery. For my 60th birthday this year I am doing a zip slide across the Clyde for Alzheimer Scotland. If I had the power I would make sure that carers, both paid and unpaid are recognised for the invaluable contribution that they make to society. That care work is regulated and well paid, and that carers have a career pathway. I would ensure that care is free at the point of need for all, and that dementia research was at the top of my agenda.