Dementia Choices Action Network (D-CAN) – Starting out using video to share

Last week I was very fortunate to be involved, as videographer and digital storyteller, in the inaugural National Assembly of the Dementia Care Choices Action Network (D-CAN). D-CAN brings together a number of stakeholder organisations with an interest in Dementia with NHS England and Improvement, Alzheimer’s Society, the Coalition for Collaborative Care and others, including people living with Dementia. A key aim of the network is to embed the principles of Universal Personalised Care (UPC) into the practice of supporting people with Dementia across the Health, Social Care, and voluntary and community sectors. D-CAN aims to provide a space wherein innovative practice and lived experience can inform practice at all levels.

i am pleased and excited that D-CAN has begun by recognising the power of video in disseminating messages and ensuring that members can learn from each other. Members want to break down the walls that exist between professional disciplines, between different organisations, between organisations and patients, and between people in the room at meetings and those who can’t be there. And it is this latter aspect that I want to talk about here. I have long believed that the public and non-profit sectors are failing to take advantage of the tools that the internet has given us to communicate beyond normal boundaries. Particularly where organisations are seeking to communicate messages and engage people in their work, it seems self-evident to me that using online video and social media will spread their reach far beyond the walls of the room they are in. That this is happening far too infrequently is a great source of frustration. Ian Donaghy, who hosted the Assembly, mentioned a number of online video resources during his comments, and he asked the audience who was aware of them. Very few of them were, and this is telling.

Stepping away from the direct field of Dementia for a moment, I am going to cite the case of Molly Watt. Molly is an inspirational young woman who lives with Usher Syndrome (which causes deaf / blindness). She has created her own Foundation, works as an accessiblity consultant, and uses online video and social media to document her life and how she uses new technologies to live as full a life as possible despite her limited vision and hearing. I know that she has provided inspiration for many others living with the same condition and given them confidence to overcome the barriers they face to achieving their ambitions. Peter Berry was diagnosed with Early Onset Dementia at the age of 50. He has made more than 100 of his weekly video diaries documenting the challenges of living with his condition. Usually his diaries are just him and his camera, but he has occasionally involved his wife, his daughter, and friends to give a perspective on what it’s like living with someone who has Peter’s conditon. A few years ago I was videographer at two North Wales Dementia Meetups. At the first event I interviewed a number of people in the audience who were living with Dementia. Several of them told me that their diagnosis had left them depressed and despondent. A year later, at the second event, some of those people were on the platform telling their stories and recounting how the first event had given them inspiration to turn their lives around and take positive actions to overcome the limitations of their condition.

OK, so the last example is about inspiration coming from the people you directly interact with, but there cannot be any denying that online video amplifies and spreads the ability to learn from how others do things. And that these lessons are all the more powerful when they come from people like you, living daily with the condition you live with than from official sources.

The fact that D-CAN is making some steps towards recognising that online video has a role to play in connecting people beyond physical meetings is, to me, a great, positive step forward. I believe we need to build on this step and roll the use of video into further meetings and into helping those living with Dementia to learn from each other. And we need to extend this practice into many other areas and many other conditions.

The growth of the internet has brought with it an explosion in the use of online video. More than a year ago, a report was published which showed that young people watch Netflix more than they watch the BBC. The millions of hours of online video which exist represent a major learning opportunity that, by and large, our public institutions are not making adequate use of. And they need to be seeding this resource with their own content that people can draw on. I am hopeful that D-CAN can be part of this process.

All the video from the first National Assembly of D-CAN can be viewed here. The video below, of the delegate interviews starts with Christopher Richmond, who lives with Dementia himself, telling his story. This is just the kind of thing I want to be able to support more of.

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