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Dementia Activism Week - Day 3!

Publication date

Today, 16th September, is the third day of Dementia Activism Week. All week we will be sharing some of the fantastic work that has been done in Scotland already by people living with dementia to inform and influence, and to take the lead in what matters to them - remember activism can take many forms, small or large! We want to encourage as many people to get alongside and support Dementia Activism Weekincluding people with dementia, unpaid carers, supporters and stakeholders.

Today is the premiere of the film "Standing up for Dementia in Fife" - by the STAND @DementiaVoices group, based in Kirkaldy, Fife.

Here is some background on STAND, as seen through the eyes of group member Irene Donaldson:

"Hi there I’m Irene. I am a 58 year old retired Deputy Head Teacher and member of STAND based in Kirkcaldy. STAND means Striving Towards A New Day something we can hopefully all relate to. Our group is fairly new and was formed in October 2019. We meet on the last Friday of each month in the Alzheimer’s Centre in Kirkcaldy as this is fairly central for most of the group. Maggie Simpson (Specialist Nurse) and Ruth McCabe (Fife Council) were the driving force to set up the group and the dynamic duo who keep us all going! People living with Early Onset Dementia and friends/family attend as and when they can. Support workers from Alzheimer’s Scotland are often on hand to help too.

"The agenda is flexible but each meeting begins  with a warm welcome, a cuppa and some treats. It’s a lovely way to begin. We usually have a bit of a round up of what’s been happening from Ruth and Maggie and we can share any news we have. The group usually splits then into 2 groups – those living with dementia and their family and friends. Each group then has the opportunity to engage with support workers or visitors from different areas of the community. The family/friends/carers group has had  the chance to share experiences and solutions to problems. They have had input from Benefits/Citizens Rights as well as chance to complete questionnaires canvassing their opinion in progressing things.

"While this all sounds serious, and it is, the rooms are filled with laughter and a huge sense of being together and belonging. For me I have once again a peer group – folk just like me, yet individual and different,  who are not phased by a diagnosis or a label and just want to get on and make the most of life. I have peers who share my hopes and fears from the same perspective as me and this is something I have missed. I do not feel judged and I’m not afraid of rejection. 

"In short our group has been a lifeline thrown to us at a time when we were both a bit “all at sea” and feeling increasingly isolated.  Through the group I met Ruth who has afforded me so many opportunities to contribute to the wider community once more and the confidence to share my experiences. The group’s future lies mainly in our own hands now as we have equal partnerships with all involved in how we move ahead. I have a sense of purpose and self-respect once more. Exciting times ahead!"

Some of the STAND members, Gerry, Irene and Fiona, have made this film about who they are, what they do and what being part of the group has meant for them in terms of confidence and choice over their own lives.

We  have also recorded a short introduction with the group, talking to Arlene Crockett from the Life Changes Trust about how making this film has empowered them, particularly during lock down.

So huge thanks to Gerry, Fiona and Irene - and to Ruth McCabe for all her support, and here is the film, 'Standing Up For Dementia In Fife.

You can also read more about STAND on their website


We also previously published a book called  'Loud and Clear - exploring two decades of involvement, voice and activism by people with dementia in Scotland', written by Philly Hare.

It charts a 20-year history and tells the story of how people with dementia in Scotland confronted the status quo. The story is told largely through the eyes of dementia activists themselves, and reflects their successes and struggles to achieve ground-breaking change. 

It’s a fantastic testament to the work that has gone before, an inspiration for others to follow in their footsteps, and it’s also a great read.

You can download the ‘Loud and Clear’ book here 

There is also a ‘Loud and Clear’ short publication containing ‘Practical Tips’ for newer and future dementia activists, their advocates and allies.  

You can download it here