The National Dementia Carers Action Network (NDCAN) were delighted to be able to celebrate their 10th Anniversary in person at Alzheimer Scotland’s Glasgow office at the end of 2021. The current committee members joined in the celebration with an online visit from previous NDCAN Chair Irene Oldfather and Tommy Whitelaw who was instrumental in the group being set up.  Jeanette Maitland and Lorna Walker, two of the founding members of NDCAN, who have been there throughout the last ten years and have campaigned tirelessly, also paid tribute to the achievements of the group. 

We spoke to Tommy, Irene, Jeanette and Lorna to find out a bit more about how NDCAN was formed and what it has meant to them.

How was NDCAN founded?

Tommy, a full-time carer to his mum who had dementia, recalls the group was established to raise awareness and to campaign against the inequalities faced by people living with dementia, their families and carers. It was a difficult time, and he started a campaign with Alzheimer Scotland where he worked with Chief Executive Henry Simmons on how to share the stories of people in a similar position to himself. Tommy and other founding members took letters and stories to parliament and the Cabinet Secretary at that time, Nicola Sturgeon. As Tommy continued to meet the people behind those letters, Henry made the commitment to create a campaigning group for carers, and this was the start of NDCAN. Having this voice allowed carers to play a strong part in engaging at senior Government levels and gave hope that conversations around caring and dementia would come to the forefront so that policy could then be turned into practice.

What were the challenges in the early years and how were they overcome?

Irene recalls with a huge smile her experiences as the Chair of NDCAN for the group’s first four years, The group started from scratch with no former experience or formal structure. On reflection, they were a group of individuals who felt broken and had faced significant challenges in their personal lives. It was that experience that gave them the drive to advocate for those who were caring for someone with dementia, but who felt invisible and unheard. 

Irene pays tribute to Alzheimer Scotland’s Director of Policy and Practice Jim Pearson, and Chief Executive Henry Simmons for their guidance and support in those early days. She also acknowledges that as the group developed there was a realisation that while members felt broken, they had skills and talents that could be honed to make a major impact on influencers and decision makers for change and improvement. The group learned how to campaign at a number of levels and influence the agendas of others. The Never Doubt We Can motto was – a reflection of a can-do approach and a significant factor in the naming of the group as ND-CAN
 

Why is a group like NDCAN so important?

Lorna was a carer for her beloved mother.  She says that the passion to hear the hidden voices and stories is still alive and the voices of those with lived experience in Scotland must continue to be heard. Lorna feels that NDCAN must work closely with colleagues in organisations such as NHS Education for Scotland and the Scottish Social Services Council (SSSC) to improve training for carers so they are fully equipped with the understanding needed to support caring at home for a person with dementia. 

Lorna shares this quote:

“It's not enough to have lived. We should be determined to live for something. May I suggest that it be creating joy for others, sharing what we have for the betterment of personkind, bringing hope to the lost and love to the lonely.” Dr. Leo Buscaglia PROFESSOR, AUTHOR)

Being part of NDCAN gives people a sense of being able to influence change, to improve practice and policy, and to break down barriers faced by those living with dementia. Lorna reminds us we should not forget about the importance of research and prevention. NDCAN work with colleagues at Brain Health Scotland and the Alzheimer Centre for Policy and Practice to support their work in helping future generations.

Lorna and Jeanette
Jeanette and Lorna

What does being part of a group like NDCAN mean to carers?


Jeanette was a carer for her husband. She says that caring for someone can be extremely isolating and lonely. You can lose your social interaction and people stop calling or coming to see you.  Being part of a group of like-minded people helps you to realise you are not alone and you still have friends and a network of support. While others face the same or similar as you, there is an opportunity to influence and support change. It helps with your sense of belonging and enables you to share how you feel in a safe space, one where others can empathise with the experiences you are facing. Each person has an individual story. By sharing these stories, as a group we become empowered to influence change and raise awareness to issues with empathy and valuable insight. Lone voices are seldom heard. With a group like NDCAN, the hidden and quieter voices can become empowered and able to affect change in a constructive and measured way. Active voices can influence positively and bring about the much-needed improvements for people living with dementia and their carers.
Jeanette says:

 “To affect the change, we must be that change.” 

Moving forward...

We hope that the next 10 years will see NDCAN continue to go from strength to strength. The pandemic has disproportionally affected those with dementia, their families and carers and it is more important than ever that we continue to raise the voices of those with lived experience of supporting a person with dementia. 

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]