Listening to People with Dementia

What does it mean to listen to people with dementia and why is this important? These are questions that are still urgent and are at the centre of my presentation. There has been a gradual acknowledgement that people with dementia should be included in research and policymaking for and about their conditions. Yet for the most part those living with dementia continue to be seen as passive objects of study – not as individuals who can play an active role in either society or research. This continues to be reinforced by wider cultural narratives that equate ‘dementia’ with hopelessness and disaster. It follows that people with this condition often feel helpless in the face of encroaching catastrophe and are unable to participate meaningfully in society or even make decisions in their own lives. Consequently, until recently, there has been a tendency to prioritise the views and experiences of carers over those with dementia, themselves. However, if the human rights of people with dementia are to be fully realised, this must involve working alongside them and actively listening to their views, even (and especially) when these are challenging. People with dementia must be listened to at both personal and societal levels and this will start to widen our perception of people as much more than passive patients or sufferers. Society may even start to recognise the contribution that individuals with dementia can continue to make. This presentation will draw closely on a project that I recently collaborated on with members of DEEP and with Professor Tom Shakespeare. DEEP is the UK Network of Dementia Voices, comprising approximately 80 local groups throughout the United Kingdom. The voices that emerge from the different local and national DEEP groups are saying things which the rest of society needs to listen to. Our evaluation demonstrated the importance of hearing the many and diverse voices of people with dementia and paying attention to the similarities and differences in what these voices are saying. Above all, if we listen with care and attention, this can help to dissolve some of the fear generated by persistent tropes of decline and despair and offer glimmers of hope and inspiration.