International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Abstract

The WHO has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. AnInternational Summit on Intellectual Disability and Dementia in Scotland reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that their carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes and greater advocacy is required from national organisations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

How to improve the quality of life of elderly people with intellectual disability: A systematic literature review of support strategies

“…Several articles pointed out the negative QoL outcomes caused by the lack of a good and accessible organization of competent ministry services, care system integration, intersystem collaboration, and (simple) explication of the available options (Hole, Stainton, & Wilson, ; Wark et al, ; Webber, Bowers, & McKenzie‐Green, ). Governments and organizations would do well to create coherent policies to assemble into one framework all of the services that support this ageing population (Watchman et al, ). Outlining a national disability policy (Kåhlin, Kjellberg, & Hagberg, ) and unifying pathways between care systems could help to prevent the double jeopardy of being old and having intellectual disability.…”

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, ).…”

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

“…This level of self-advocacy is reflected by increased inclusion of adults with dementia on planning groups, on boards of dementia organizations and as sought-after representatives at public policy forums (Alzheimer Europe, 2016a; DAI, 2017). This extent of self-advocacy is not yet expressed by the population of people with intellectual disability affected by dementia or their families, nor has it been evident in decision-making levels within advocacy or national third sector or non-government organizations (Watchman et al, 2017b). The Summit recognized this deficit and supports the greater inclusion of the perspectives of adults with intellectual disability on local, regional and national planning and policy advisory boards, groups and panels.…”

“…The Summit contends that in addition the involvement of persons with intellectual disability affected by dementia in research studies as informants providing evaluation of supports and services, they should also be included as members on dementia research planning teams, and as co-researchers (see Gove et al, 2017; Watchman, 2017a). Lastly, given their particular life experiences, adults with early stage dementia or who have been impacted by family members or friends with dementia should be drawn upon to serve on advocacy and planning bodies that create national plans or advise on public policy and services development (see Watchman et al, 2017b).…”