“…While the general dementia-related literature contains work on the perspectives of adults who are diagnosed with dementia, with reflections on experiences and on what the progression of dementia may mean (Botek, 2016; Desai et al, 2016), most of the literature on dementia-related experiences in the intellectual disability field is drawn from the perspectives of proxies, such as family or staff carers (Bowers et al, 2009; Carling-Jenkins et al, 2014; Davis, 1999; Hammond and Benedetti, 1999; Lin et al, 2014). Limited subjective experiential information is available from the perspectives of adults with intellectual disability (Blackman and Thompson, 2014; Bowey and McGlaughlin, 2005; Lloyd et al, 2007; Watchman, 2014) and almost none is available drawn from research on personal perspectives.…”