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      Toward a Research Agenda on the Impact of Dementia upon Carers of Adults with Intellectual Disability

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          Abstract

          The World Health Organization’s report, Dementia: A Public Health Priority, noted that the number of people affected by dementia will continue to increase and called for nations to address the impact of dementia upon their populations. This included considering the impact on carers providing for adults with intellectual disability affected by Alzheimer’s disease and related dementias. Within the context of the USA’s dementia plan, a national group has advocated that the needs and interests of adults with dementia and their carers be taken into account when dementia-related research is undertaken. In preparation for the second national summit on caregiving and dementia to be held in the USA in 2020, this article describes an effort undertaken by this national group to identify needed research related to carers of adults with intellectual disability. The group identified three focal areas for the summit to consider: the effect of behavioral and psychological symptoms of dementia on carers, challenges for carers of adults with intellectual disability when dementia becomes evident, and barriers that carers face when accessing supports. A list of recommended topics to be researched is provided.

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          A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025

          Objective National and global dementia plans have focused on the research ambition to develop a cure or disease‐modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them. Methods Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research. Results The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10‐point action plan provides strategies for delivering the proposed research agenda. Conclusions By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.
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            National Dementia Strategies: What Should Canada Learn?

            Background In order to provide appropriate care for the aging population, many countries are adopting a National Dementia Strategy (NDS). On June 22, 2017, Canada announced it will become the 30th country to launch a NDS. In light of this announcement and as Canada prepares to develop its own NDS, we conducted this review to examine and compare the NDSs of the other previous 29 countries with Canadian government’s policies to date. Methods NDSs were compared according to their major priorities. The primary endpoints were the framework conditions and key actions outlined in the strategies. Secondary endpoints included the years active, involvement of stakeholders, funding, and implementation. Results We were able to review and compare 25 of the 29 published NDSs. While the NDSs of each country varied, several major priorities were common among the strategies—increasing awareness of dementia, reducing its stigma, identifying support services, improving the quality of care, as well as improving training and education and promoting research. Conclusions This review comprehensively lists and compares the NDSs of different countries. The results should be of great interest to policy-makers, health-care professionals and other key stakeholders involved in developing Canada’s forthcoming NDS. We hope that policy-makers in Canada can review other NDSs, learn from their example, and develop an effective NDS for our country.
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              Importance of national plans for Alzheimer’s disease and dementia

              Policy makers have a growing interest in Alzheimer’s disease and other dementias, which is seen as the main health and social care challenge of the 21st century. The best way to manage dementia at a country level is by developing national plans, comparable to nationwide management of HIV/AIDS or diabetes. This has been done in a limited number of countries, like Australia, South Korea, France, UK and USA. There are some commonalities in the current plans and we have put those together as a learning experience. The value of these plans can increase when they are monitored and evaluated.
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                Author and article information

                Journal
                10.26407
                Journal for ReAttach Therapy and Developmental Diversities
                JRTDD
                ReAttach Therapy International Foundation
                2589-7799
                17 July 2019
                08 September 2019
                : 2
                : 1
                Affiliations
                [1 ]University of Illinois at Chicago, USA
                [2 ]University of Northern British Columbia, Prince George, BC, Canada
                [3 ]Eastern Michigan University, Ypsilanti, MI USA
                [4 ]American Academy of Developmental Medicine and Dentisty, Lumberton, NJ, USA
                Author notes
                Correspondence: Matthew P. Janicki ( mjanicki@ 123456uic.edu )
                Article
                10.26407/2019jrtdd.1.18
                48e82940-2a33-4ea2-bdcc-4e64f4efdb25
                © Janicki, M.P., Jokenin, N.S., Marsack Topolewski, C., Keller, S.M.

                This is an open access article published by ReAttach Therapy International Foundation and distributed under the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0).

                History
                : 25 June 2019
                : 12 July 2019
                : 15 July 2019
                Page count
                Pages: 10
                Categories
                Medical Aspects of Disability

                Pediatrics,Psychology,Special education,Health & Social care,Clinical Psychology & Psychiatry
                Alzheimer’s disease,carers,dementia,Down syndrome,intellectual disability,national plans

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