What is Deepness Dementia Radio and how did it come to be?
Deepness Dementia Radio, from Deepness Ltd., is an internet radio station that provides a diverse selection of music, news, interviews, and information about dementia. All of the presenters have a diagnosis of dementia.
Deepness Ltd is an independent non-profit organization where 9 of the 12 board members have a diagnosis of dementia. Founded four years ago by Ron Coleman, Deepness Dementia Radio is one strand of Deepness Ltd’s work to challenge the stigma of dementia, and to show that there can be a life to lead after a diagnosis.
Deepness Dementia Radio is broken up into several segments. The news program covers items relevant to people living with dementia or their families: “Our Rights” tries to make information about the rights of people living with dementia more accessible; “Dementia Speaks” has interviews with people living with dementia or a family member; “Meet the Professionals” interviews those working in dementia; and numerous other music programs and blogs by people living with dementia.
Deepness Dementia Radio tries to convey that very often a diagnosis of dementia may not be the beginning of the end, rather the end of the beginning, meaning that with appropriate information, support and services, many people can live a much more normal, active life than is typically associated with dementia.
What initially inspired you to grapple with dementia?
I worked in health care for nearly 20 years caring for people dying with dementia. When I got my dementia diagnosis, I thought it was the beginning of the end.
A year later, I met people like Wendy Mitchell, Agnes Houston, James McKillop, and Ron Coleman, all of whom showed me that there is a life to lead after my diagnosis. Consequently, I have lived a more active and fulfilling life since then.
How has working on dementia-related art changed you?
Doing this work has shown me that the training I received and my understanding of dementia over those nearly 20 years wasn’t good enough. I tried to better inform myself, but I was consistently met with the stigma and assumptions of colleagues.
Since my diagnosis, I have learned much more. I try to do what I can to improve the lives of other people living with dementia.
I recognize now that politicians, professionals, organizations, support, and services are stuck with the attitudes of previous decades. Reform will take a long time, and probably not until Gen Z makes up the consultants, commissioners, matrons, and managers of the future
What message do you hope that listeners of Deepness Dementia Radio receive?
People living with dementia who are living their lives within the reduced limits of their dementia are often vilified because they don’t meet the assumptions of professionals and family members whose loved ones are further on in their dementia journey.
Like stage 4 cancer, a person living with late-stage dementia – which I call the “palliative stage” but professionals call the “end stage,” – may well be dying, but at early-stage dementia and stage 2 cancer, there may still be plenty of life to lead. A professional giving a diagnosis of stage 2 cancer wouldn’t tell their patient to go home, put their affairs in order and provide no support, so why tell someone with early-stage dementia to go home, put their affairs in order and then provide no support?
Instead of saying it’s not appropriate to try, because it’s assumed a person living with dementia doesn’t understand, people living with dementia should be given the chance to try.
Find more about Deepness Dementia Radio and listen live on its website. Also find the Radio service on Instagram, Facebook and X. Deepness Ltd will be organizing the 3rd Scottish Dementia Arts Festival and Gathering, provisionally in Stirling, Scotland, in October 2025, subject to funding and appropriate venue availability. Subscribe to Deepness Ltd’s newsletter to be the first to receive updates.
