Dying well with an intellectual disability and dementia?

As more people with intellectual disabilities live into old age, the prevalence of dementia in this group is increasing. Kathryn Service and colleagues examine the challenges to dementia practice presented by intellectual disabilit

Principales conclusiones acordadas durante la cumbre sobre discapacidad intelectual y demencia

First paragraph: Este breve informe resume las recomendaciones de la Cumbre Internacional sobre Discapacidad Intelectual y Demencia, celebrada en Glasgow, Escocia, del 13 al 14 de octubre de 2016, organizada por la Universidad de Stirling y la Universidad del Oeste de Escocia, financiada por el RS MacDonald Trust, el Gobierno escocés y Alzheimer Scotland. Los patrocinadores colaboradores incluyeron el Grupo de Trabajo Nacional sobre Discapacidades Intelectuales y Prácticas de Demencia (NTG) en los Estados Unidos y la Universidad de Illinois en Chicago. La cumbre fue copresidida por Karen Watchman, Ph.D. y Matthew P. Janicki, Ph.D., y tuvo representantes multidisciplinares de distintas organizaciones nacionales e internacionales con intereses en cuestiones relacionadas con los adultos con discapacidad intelectual afectados por demencia. El contenido de esta declaración fue parcialmente desarrollado gracias a una subvención del Departamento de Salud y Servicios Humanos de los Estados Unidos, Administración para la Vida Comunitaria (ACL), Beca del Instituto Nacional de Discapacidad, Vida Independiente e Investigación en Rehabilitación (NIDILRR) # 90RT5020-03-00. Sin embargo, esos contenidos no representan necesariamente la política del Departamento de Salud y Servicios Humanos de EE. UU., ni el respaldo del Gobierno Federal de EE. UU. Las opiniones expresadas representan las de los participantes de la Cumbre y del NTG

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

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. An International 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

Quality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provision

Purpose of Report: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The questions before the summit were whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Findings: The summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the summit agreed that it is imperative that change is measured from the person’s prior functioning in combination with clinical impressions of decline and of increasing comorbidity including particular attention to late onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognize the greater likelihood of physical symptoms, comorbidities, immobility, and neuropathological deterioration. Summary: The summit recommended an investment in research to more clearly identify measures for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers, and identify additional markers that may help signal decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.Additional listed co-author: Advanced Dementia Working of the International Summit on Intellectual Disability and Dementi

Opportunities, barriers, and recommendations in down syndrome research

Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. This review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy

Nuclear Organization and Dynamics of 7SK RNA in Regulating Gene Expression

We have identified 7SK RNA to be enriched in nuclear speckles. Knock-down of 7SK results in the mislocalization of nuclear speckle constituents, and the transcriptional up-regulation of a reporter gene locus. 7SK RNA transiently associates with the locus upon transcriptional down-regulation correlating with the displacement of pTEF-b

Partnering the ageing and disabilities systems – the USA experience

INTRODUCTION: In the United States, the original Older Americans Act (OAA) created a system of community-based social support services for persons age 60 and older. An updated OAA included provisions for access to these services by persons with intellectual and developmental disabilities (I/DD) and supports for older carers of persons with I/DD. Many state and local initiatives have been initiated for use of the OAA as a means for promoting greater integration of older persons with I/DD into existing community-based social services for the elderly by targeting primarily the nation’s network of senior centres and neighbourhood congregate meal sites. DESCRIPTION: To help these efforts a national training program underwritten by a federal grant was undertaken in which workshops, networking building, and technical assistance efforts were conducted by a team of government and university colleagues. CONCLUSION: The outcome was an enhanced understanding—among workers in community ageing programs—of the needs and wants of older people with I/DD, an opening of programs, and greater collaboration on sharing resources and providing supports and services. Although obstacles remain, often linked to enmity toward people with disabilities, unwillingness to share funds and resources, or age-peer ignorance, the initiatives generally have proved to be productive resulting in enhanced social integration and the elimination of barriers to planning cooperative community services

Aging Among Older Adults With Intellectual and Developmental Disabilities: Setting National Goals to Address Transitions in Health, Retirement, and Late-Life

Building on the findings of the 2003 meeting, Keeping the Promises: National Goals, State of Knowledge and Research Agenda for Persons with Intellectual and Developmental Disabilities, the intended outcomes of the 2015 National Goals in Research, Practice and Policy Conference were to outline a vision for the future and leadership of research, practice, and policy in intellectual and developmental disabilities (IDD). At the National Goals 2015 Conference held August 6–7, 2015, in Washington, D.C., 12 members of a designated strand on aging were charged to discuss the research and gaps in evidence specific to the context of transitions in aging associated with health, retirement, and end of life. The strand was comprised of a strand leader, research mentor, policy consultant, conference liaison and eight other participants with expertise and experience in aging among people with intellectual and developmental disabilities. Explored in relative detail are the four goals, rationale, and implications for research, practice and policy to facilitate a positive and person-centered approach to supporting people with IDD as they age and face these transitions in late-life