Dementia Activism Week - Day 5!
Today, 18th September, is the fifth and final 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, we are focussing on Ron Coleman, a newer activist who lives on the Isle of Lewis, and who is already making his mark in the dementia world.
He features in the dementia activism book ‘Loud and Clear’ (see below) and is also a member of the DEEPNESS Dementia Media group (www.deepnessdementiamedia.com)
Deepness Dementia Media is a platform that gives people tools for living well with dementia designed collaboratively with those with dementia leading the process. They come together in a supportive, energetic common space that makes a huge difference to the wellbeing of those going through dementia. As opposed to providing a cure, their goal is to help people become autonomous and get the most out of life. They bring a series of innovative projects – such as a radio station, online education courses, and much more – that use technology and music in a way that keeps people connected and stimulated.
Alexa is becoming growingly popular among care agencies, who use Alexa as a form of care support. Ron believes in using Alexa as a personal assistant through personalising the device in accordance with his needs. This way, people who are cognitively impaired enjoy greater independence by using Alexa in a way that gives them the right kind of assistance.
He has produced a ‘peer to peer’ resource called 'Alexa and Me' that guides anyone with dementia who is not familiar with – or a bit wary of – Alexa through the journey of using Alexa to empower and support their lives. It’s a practical workbook that individuals can use to help with involving technology in their day to day lives in a positive way.
Ron has also written a stage play ‘Alexa and Me’, which he has turned into a radio play. The first act of the radio version (there are two acts) is called "Caught in a moment of time". Each act is designed to be a stand-alone piece.
Act one, deals with some of the issues around the use of Artificial Intelligence (AI) in dementia , and also deals with communication and how people perceive the capabilities of people with dementia comparing that with the non-judgmental approach of AI. Ron describes the first Act as a way of raising a number of possible discussions with the audience. These include:
1: That the capabilities of people with dementia are often overlooked
2: That AI has the potential to help us remain in our own homes for much longer if used properly.
3: The need to put in place effective planning methods that enables the interaction between AI and the person to be helpful.
4: Communication has to be clearer and more honest than how it is at present.
The radio version of the play's production was performed by: John Stahl (Game of Thrones, Season 2&3), Jane Paton (Poirot, Tales of the Unexpected) and Karen Taylor (Caught in The Moment of Time stage version.) Directed & Produced by Laura Cameron Lewis and Co-Produced by Deepness Ltd.
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.
There is also a ‘Loud and Clear’ short publication containing ‘Practical Tips’ for newer and future dementia activists, their advocates and allies.