Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability

Abstract

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

Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support

“…The Summit together with Shakespeare, Zeilig & Mittler (2017) However, there is little evidence that persons with dementia are being included in its implementation at national level. The Summit (Watchman et al, 2017) recommended that a human rights approach be adopted that ensures that: everyone with dementia including people with intellectual disability, are provided with information in an accessible format to make people aware of their rights; intellectual disability organizations respond to a call for greater advocacy on behalf of their members with an intellectual disability and dementia and liaise with dementia organizations to share an advocacy role for families; that all nations review laws and policies to replace regimes of substitute decision-making by supported decision-making, which respects the person's autonomy, will and preferences;…”

Nursing people with intellectual disability and dementia experiencing pain: An integrative review

“…Those included did not experience communication challenges so caution must be exercised when applying the findings to people with intellectual disability and advancing dementia. The person with intellectual disability and dementia can easily be overlooked, but they must be facilitated to ensure their voice is heard (Keenan & Keogh, ; Watchman, ; Watchman et al, ) and to advance understanding of the effects of dementia on them and their experiences (Watchman et al, ).…”

Highlights from the International Summit on Intellectual Disability and Dementia Implications for Brazil

“…This will impact the creation of self-determined and individualised supports for them. 28 Three recommendations were made: (a) undertake more research on care determination situations, (b) enable greater involvement of self-advocacy groups in dialogues with providers, and (c) increase efforts on breaking down bias by research and ethics review boards on using persons with ID as informants.…”