Globally, an estimated 46.8 million people are living with dementia (ADI, 2015). The figure for Japan is 5 million; this represents 15% of all those aged 65 years and over (MHLW, 2015). With no cure and few effective treatments, policy developments increasingly emphasise ‘living well’ with the condition within supportive families and friendly communities (DH, 2009, 2012a, 2012b; WHO and ADI, 2012). [...] Although evidence to support the positive impact of involving people with dementia in the Dementia Friends initiative is limited, the need to extend its ambitions to do so underpins the principle ‘Nothing about us, without us’, campaigned for by the JDWG and other dementia groups and activists nationally and internationally (Dementia Alliance International, 2015; Swaffer, 2015).