My campaigning journey

How I got involved with NDCAN

I first became aware of NDCAN when I was attending the Alzheimer Scotland Annual Conference in 2017. At the time, I was caring for my mum and had seen the conference advertised, and thought that it would help me understand her dementia better. NDCAN had a stand and I spoke to their Coordinator at the time, Jane, who explained that they helped to give a platform for carers. I thought this was something I could really get involved with and I Iater met up with Jane to chat more about NDCAN. 

Joining the committee

Joining the committee

I joined the committee a year later in 2018. I felt passionately that the experiences and struggles we faced when caring for mum could have been avoided had there been better awareness, training and support. As a committee member, I have had huge opportunities to have a say, improve awareness, and make positive changes. With the current Covid pandemic, we have all seen the effects on our care homes. I have only been able to visit mum 3 times in 7 months, and my husband hasn't seen her at all due to visiting restrictions. Now visiting has been stopped and we only have 'window visits'. This makes me more determined to speak out, and I am grateful that I can. 

At committee meetings, we have had speakers from all areas of dementia care, such as the Care Inspectorate, Dementia in Care Homes group, Focus on Dementia and more. We are able to give our opinions and share our experiences at these sessions. Shortly after I joined the committee, we met with the Minister for Mental Health and had the opportunity to discuss the implementation of Scotland's Dementia Strategy and the funding of Post Diagnostic Support. 

Quote 1

"I really love that we can truly make a difference. I enjoy working alongside the Scottish Dementia Working Group and hearing the feelings of people living with dementia has given me a different viewpoint"

Some of my work

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.    

Elaine at the launch of the Fair Dementia Care Campaign
Elaine (right) at the launch of the Fair Dementia Care Campaign

My role continued

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. 

Elaine at a Dementia Champions event at Murrayfield
Elaine at a Dementia Champions event at Murrayfield

Quote 2

"To anyone thinking of joining and feeling nervous, I would encourage you to join. You gain so much and i feel it helps me emotionally as I am able to make a difference. I can't help mum but I can help make the future better for others."