This podcast draws on an online discussion chaired by Professor Tom Shakespeare on 3 December 2019 (International Day of Persons with Disabilities). Five of the sixteen people involved are living with dementia.

Topics explored included: issues of labelling and stigma; the social model; time for relationship building and process; survivor research access; control; emancipatory research; authentic coproduction; ethics; power imbalances; funding structures; co-authoring and publication; representativeness; convincing evidence.

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  • “The biggest encouragement we’ve had is that people have listened to us”

  • “How do we feel about our involvement as Pioneers in Dementia Enquirers, towards the mid-point of the programme?”

  • “Leading our own research – what can people with dementia and people from other disability movements learn from each other?”