The International Summit on Intellectual Disability and Dementia held in Scotland in 2016 covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This paper reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from Summit attendees, and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Omission of the perspectives of persons with intellectual disability in both policy and practice limits understanding of the experience of dementia. It leads to an overreliance on proxy reporting; something considered by the Summit to be a backwards step in person-centred work. The Summit recognised that the perspectives of persons with intellectual disability must be considered whenever interventions and supports are discussed with planning required at an earlier stage for advance directives that guide medical treatment, and for advice or counselling around relationships, the continuity of social networks, and when securing dementia-friendly

Purpose Information on the risk of dementia in aging persons with intellectual and/or developmental disability (IDD) in Manitoba, Canada is lacking. The purpose of this paper is to estimate dementia prevalence in adults with IDD. Design/methodology/approach Anonymized population-level health and non-health administrative data (1979-2012) contained in the Population Health Research Data Repository of the Manitoba Centre for Health Policy (MCHP) were linked to identify adults with IDD, and estimate the prevalence of dementia based on the presence of ICD codes. Prevalence of dementia was estimated for persons aged 18-55 years and 55+ years, and was reported by sex, type of residence, region of residence, neighbourhood income quintiles, and IDD diagnostic category. Findings Of the 8,655 adults with IDD identified, 8.1 per cent had an indication of dementia in their medical records; an estimate three times greater than that found for those without IDD (2.6 per cent). More than 17 per cent of Manitobans with IDD aged 55+ years had an indication of dementia, which was nearly twice the rate reported previously. Of those with IDD and dementia, 34.7 per cent lived in long-term care facilities. Originality/value Health and social support services are typically available to individuals with dementia aged 65+ years; thus, younger adults with IDD and dementia may not be eligible for those supports. To promote equity in health and access to care, dementia screening and increased supports for aging individuals with IDD are recommended.