Nothing About Us, Without Us
The right to full, equal participation
People living with a dementia are experts in their own experience.
Too often, systems speak about or for people living with a dementia - or worse, they erase them entirely.
Their voices, choices and perspectives must guide how we design, teach, and deliver dementia-related work.
‘Nothing About Us, Without Us’ is a phrase that serves as a reminder to centre lived experience as knowledge: not something to interpret or manage, but to respect, include and learn from.
Below you will find a selection of networks, organisations and individuals who are amplifying and centreing the voices of people living with a dementia.
DEEP
DEEP stands for the Dementia Engagement and Empowerment Project – it is the UK network of dementia voices. DEEP consists of around 80 groups of people with dementia – groups that want to change things.They have a number of resources on ‘involving people with dementia’ best practice.
Dementia Tip-Share
Dementia Tip-Share is a space to help you to keep living as well as you can, from people with dementia, for people with dementia.
Talking Sense
Talking Sense is the culmination of more than a decade of research by Agnes Houston after she was diagnosed with younger-onset dementia in 2006. It was also written as a response to the lack of practical advice she was offered by a number of healthcare professionals after her diagnosis.
Dementia Enquirers
Dementia Enquirers is developing a new approach to research, or ‘enquiry’, that is led and controlled by people with dementia. It supports around 20 DEEP groups in conducting their own research projects.It’s main aim is to test out what it means for people with dementia to be ‘in the driving seat’ of research.
Dementia Diaries
Dementia Diaries gives a voice to people with dementia through more than three thousand audio and video diaries. It is run by Innovations in Dementia.
Deepness Dementia Media
Deepness is a not-for-profit organisation, run by people living with dementia and cognitive impairment for people living with dementia and cognitive impairment.
Re-imagining Dementia
Reimagining Dementia is an international group of people living with dementia, carers/care partners, family and community members, dementia activists and allies, health professionals, advocates, artists, academics, policymakers, and others.
Dementia the Musical
Written for and with those living with dementia this brand-new musical is based on the campaigning work of three of Scotland's longest serving dementia activists James McKillop, Nancy McAdam and Agnes Houston, and the fight they have led to ensure people with dementia have a voice in what happens in their lives.