About Deepness

 

 

Deepness is a not-for-profit organisation, run by people living with dementia and cognitive impairment for people living with dementia and cognitive impairment.  Our governance is ultimately held by our membership, people living with dementia and is exercised at the AGM through the approval of both our ongoing strategy and the election of the board. 

The board has nine members with a lived experience of dementia and three others.  The Chairperson holds a casting vote if any vote is tied and that vote will be cast with the majority of people with lived experience.  The Chairperson must have lived experience of living with dementia.

Deepness Dementia Media is our website and platform that gives people tools for living well with dementia, designed collaboratively with those living with dementia leading the process.  By coming together in a supportive energetic common space that makes a huge difference to wellbeing of those living with dementia. 

Since our inception we have been successful in setting up an online radio station (Deepness Dementia Radio) which runs 24 hours a day, 7 days a week.  The radio has an increasing number of shows presented and organised by people living with dementia.  This includes Dementia Island Discs, 1 in 100 and DJ's Howard Gordon, Ronald Amanze and Gail Gregory. 

We also run an online Dementia Wellbeing College which aims at helping people to live well with dementia through increased autonomy, promoting better relationships, developing a stronger understanding and growing in a co-productive way.  Providing online courses enables anyone in the UK to attend courses with no geographical limitations.

Our online Dementia TV station was launched in March 2022, providing dementia news, challenging stereotypes and shows about living well with dementia, following our same values and ethos.

We also use multi-media to promote living well with dementia and challenging dementia stereotypes, through art, theatre, music, podcasts, dance, film and conferences.

 

Deepness Board Members

Ron Coleman

Ron is the co-founder and Chairperson of Deepness Ltd.

Originally from Dundee, Ron lives in the Isle of Lewis with his wife, Karen Taylor and dog Nor.  Following his diagnosis with dementia in 2017, Ron established Deepness Ltd as a space for people living with dementia to come together and live well with dementia through the media platform of the website.  He has made a new life writing poetry, plays, music and books as he thrives living with dementia.


 

Howard Gordon

Howard worked in Healthcare for nearly 20 years before his diagnosis of Alzheimer's in March 2017.

Since his diagnosis Howard has been a delegate at the Global Disability Summit in 2018 and the European Commission. Attended UN COSP 12, speaker at the FT Dementia Summit, Manager, Producer, Presenter on an ADI Webinar on Research, spoke at the 25th session of the UN CRPD Committee and advised on the BBC Podcast Series "Dementia and Me". Howard has many roles including the World Health Organisation - Global Dementia Observatory, Director Deepness Dementia Media Ltd, Manager, Producer, Presenter at Deepness Dementia Radio, Dementia Enquirers Project, Sheffield Access Liaison Group, Sheffield Dementia Action Alliance, Sheffield Transport4All, South Yorkshire Dementia Research Advisory Group.  Previously, Howard was a member of the Prime Ministers Champions Group, a Board Member of Dementia Alliance International, Co-Chair of the 3 Nations Dementia Working Group, member of the International Federation on Ageing, Biohringer-Ingleheim Patient Advisory Board and the Steering Group for Dementia Adventure.


 


Michael Cheung

I arrived in the Scotland in 1968, where I had all my higher education and qualified as a biology teacher.  I then went on to teach in four schools for thirty six years. I retired from full time teaching in 2010.

I was diagnosed with Alzheimer's about 3 years ago.

I started connecting with numerous groups to do with Dementia Research, as a Community Researcher with the University of Stirling - to use my lived experience (Dementia) to influence research, working closely with Professional and Academic people. I became a member of Deepness Ltd about 15 months ago, as they are doing wonderful things in helping people with Dementia. I was invited to became a board member by Ron which lead me to make new contacts with wonderful people such as Ron, Karen, Willy, Gerry, Agnes, Anne, Jim, Howard, Julie... the list is endless. Deepness Ltd has given me a new lease of life, allowing me to feel that I am not only living with dementia - but living a new and better life.


 


Willy Gilder

Willy was diagnosed with Alzheimer's Disease in April 2021.

His form of the disease affects his eyesight but not his memory.  As an ex journalist he has decided to use his skills in interviewing and social media to further knowledge about dementia, in an effort to fight the stigma around the illness.  During 2022 he aims to produce a series of video interviews with people with dementia and is also working on a portrait painting project. He currently lives in Edinburgh.


 


Agnes Houston

Agnes is a pioneer researcher on dementia and sensory challenges, raising understanding and awareness of those often overlooked at symptoms.

As a former nurse, when Agnes was diagnosed at 57 with early onset dementia she realised she could either sink into the corner and be ‘done to' or take control of her life.  She very quickly adapted to her cognitive and sensory challenges, coping with the social lack of knowledge and understanding around the condition. This led her to become a pioneering activist and researcher in dementia, challenging stigma and providing information for others living with dementia.  In 2015 Agnes was awarded an MBE for her work in dementia.  In 2016 she gained a Churchill Fellowship to undertake research and publishing the booklet ‘Dementia and Sensory Challenges' of which 15,000 copies have been distributed worldwide.  Agnes is a member of the Dementia Alumni Group, working tirelessly to raise awareness of those living with dementia.  She has researched, written and published many videos, podcasts and booklets, to enable people living with dementia to stand up and be a citizen, not a victim, which she ultimately wants to leave as a legacy for others.


 


Anne Scott

My name is Anne Scott and I live in Belfast Northern Ireland, with my daughter Evie who is thirteen years old, and I am the mother of five children.

After being diagnosed with Chronic small vessel ischemia, Multiple sclerosis and Fibromyalgia I decided to write a book called… Sizzling Bacon!

Sizzling Bacon is a book to help children and adults understand dementia. Presently I am working with Outside Lives Ltd in Wales on a dementia project to bring Sizzling Bacon into their schools. I am also working on a new book called… Sizzling Bacon and the Bumble Bee and I am also the Editor of the Deepness Dementia newsletter, and am a dementia advocate.


 


Gerry King

Hello, my name is Gerald King, I am 58 years old and I live in town called Glenrothes in Fife with my wife Trisha. I have 3 children and have recently became a grandad to a very funny but stubborn grandson.  My background is Architecture having served my apprenticeship in private practice and thereafter moving into local authority where I worked extremely hard for more than 30 years.

I was medically retired at the age of 55 after being diagnosed with young onset Alzheimer's disease.

Once I had got over the initial shock of the diagnosis and all the ramifications associated with it, I realised that dementia was not the end but actually a new beginning.  Dementia has opened up many new doors and introduced me to many, many new friends.  I have revisited many hobbies that I had previously put to one side or simply forgot about as I was too busy earning a crust and getting caught up in the rat race of life.  I now once again enjoy drawing, poetry and music. I get involved in dementia research, dementia awareness presentations, dementia activism and most importantly peer support, all of which have given me back that feeling of self-worth and confidence and have enabled me to once again contribute to society and live well with young onset Alzheimer's disease.


 


John Scotter

I was born and grew up in Hemel Hempstead.  When I was 17 I left home to live in the Fareham/Gosport area of Hampshire and lived and worked there until 2019 when I moved to Derby and later in 2020 to Halkirk in Scotland.  I have two children who are now grown up and have children of their own.  I trained in electronics and spent most of my working life in the radio and TV repair industry.  The last part of my career I worked for Sony as one of their technical in country engineers supporting the Sony repair network.  I also had a second role of risk manager.  This involved managing all the fires, electrocutions claims and fake products in the marketplace etc for Sony.  

After some noticeable physical issues I was diagnosed with Parkinson's in 2016 and later in 2017 with Parkinson's dementia. This didn't stop me getting on with life in fact the opposite. 

After my marriage broke down due to the Parkinson's diagnosis I moved to Derby to start a new life with Susan. Susan and I moved to Halkirk in 2020 and got married here in Scotland in 2022.  

Since diagnosis with Parkinson's and dementia I have started an on line radio station for Parkinson's and recently joined the Deepness Dementia board together with my wife Susan. 

Life has endless possibilities even with a major illness. With careful management and a degree of chaos it is possible to achieve great things. I maybe am loosing physical abilities and mental dexterity but I will never let anything stop me from having a go at anything. 


 


Ronald Amanze

Ronald was born and brought up in north-west London, but now lives in Luton. He had a stroke in 2013 and in 2015 was diagnosed with vascular dementia.  He has had several careers, including as a music producer.

Ronald has often felt culturally misunderstood when receiving dementia support.

Inspired by Black history and reggae music that shaped his early years, Ronald has a number of dementia radio shows, including the much loved Ronald Amanze show on Deepness Dementia Radio.


 

 Living Well With Dementia selling Dementia Radio and Dementia Online Courses

Michael Simms

I was a labourer for the local Government in Nottinghamshire, for many years, a 'Jack of all Trades' and master of none!  I am married and have one daughter and two grandchildren.  Diagnosed with Fronto Temporal Dementia in 2017 and the main impact from this is the personality changes and the struggle to regulate emotional responses.  I joined as a member of Kirrie Connections Meeting Centre to access support around my diagnosis.  I was later invited to join the board during the development of Lochside Connections, a second Meeting Centre in the local area. 

I want to ensure no one living with dementia gets left behind and am an advocate for good quality Post Diagnostic Support.


 


Karen Taylor

Karen is co-founder and co-ordinator of Deepness Ltd.

As wife of Ron Coleman, she has first-hand experience of living with someone with dementia.  She was a mental health nurse for 16 years  from 1987.  After finishing her training she worked for the first 6 years with people living with dementia and their families.  This was a great period of change in care.  She then went on to work in adult community mental health, leaving in 2000, going on to work with Ron Coleman for the next 20 years.  She has played an active role in developing Deepness Dementia Radio and the 100/6000 Conferences, whilst also running her other two business' Working to Recovery and Midwife of the Soul.


 


Louise Davidson

Therapist, dance and movement specialist with over 20 years' experience in teaching movement/dance, postural alignment, pain-free movement, stress reduction, rehabilitation and neurological balance.

Originally dance trained in the U.S, and went on to manage one of the top New York dance studios.

I have continued professional training in Authentic Movement, Clinical Somatic Release, Neuromuscular movement, brain training for neurological conditions, Child infant development and trauma informed training. I have 20 years of teaching and performance experience both in U.S, Spain and the U.K.


 


Jim Campbell

Since 2017 Jim has worked as a full-time professional close-up magician.

Prior to becoming a magician he worked for over 20 years in healthcare, education and research, training and working as a mental health nurse.  With some friends who are living with dementia, Jim has become passionate about challenging the stigma and promoting that a dementia diagnosis is not the end, it is just a change.

 

 

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