Opportunities, barriers, and recommendations in down syndrome research.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Multimorbidity in older people with intellectual disability.

BACKGROUND: There is paucity of research from Australia about comorbidity in older people with intellectual disability (PwID). This paper examines the burden of chronic diseases and associated sociodemographic correlates in a cohort of PwID aged 60+. METHODS: A cross-sectional survey was used with community-dwelling older PwID in urban/rural regions of two Australian states. Recruitment was undertaken via a multi-prong approach and each subject (N = 391; 236 urban/155 rural) personally interviewed. RESULTS: Findings show older PwID experience considerable multimorbidity (X = 3.8; 53.5% had 2-6 conditions). Conditions included arthritis (40%), diabetes (26%), cardiovascular diseases (23.6%), asthma (16.1%), carcinomas (10.0%) and mental health disorders (34.5%). CONCLUSIONS: There was significant multimorbidity in older PwID, with evolution of life trajectories of select conditions associated with socioeconomic disadvantage and heath facility access barriers. Greater scrutiny of progressive health debilitation leading into older age and increased engagement by healthcare systems is required earlier in the lives of PwID.

Highlights from the International Summit on Intellectual Disability and Dementia: implications for Brazil / Síntese da Cúpula Internacional sobre Deficiência Intelectual e Demência: implicações para o Brasil

ABSTRACT In October of 2016, an interdisciplinary group representing North and South American and European countries met in Glasgow, Scotland, to scrutinize universal issues regarding adults with intellectual disability (ID) affected by dementia and to produce recommendations and guidelines for public policy, practice, and further research. The aim of this paper is to apprise relevant outcomes of the Summit targeting Brazilian researchers, clinicians, and nongovernmental organizations in the field of ageing and dementia that are committed to developing the Brazilian national dementia plan. Three core themes were covered by the Summit: i) human rights and personal resources, ii) personalized services and caregiver support, and iii) advocacy and public impact. The exploration of the themes highlighted variations across countries, and revealed consensual views on matters such as international networks, guidance for practices, and advocacy on behalf of both people with ID affected by dementia, and their families. The authors outline the challenges Brazil must confront regarding ageing and dementia and proffer recommendations to address the needs of adults with ID affected by dementia within this scenario; both of which would help in developing the Brazilian national dementia plan.

RESUMO Em outubro de 2016, um grupo interdisciplinar representando países da América do Norte e do Sul, bem como Europeus reuniu-se em Glasgow, na Escócia, para examinar questões relativas aos adultos com deficiência intelectual (DI) afetados por demência e para produzir recomendações e diretrizes referentes às políticas públicas, práticas e pesquisa. O objetivo deste artigo é informar os resultados relevantes da Cúpula aos pesquisadores, clínicos e organizações não-governamentais brasileiras que atuam no campo do envelhecimento e da demência, e estão envolvidos no desenvolvimento do plano nacional de demência. Três temas centrais foram discutidos na Cúpula: i) Direitos humanos e recursos pessoais, ii) Serviços personalizados e apoio aos cuidadores, e iii) Advocacia e impacto público. A exploração dos temas destacou as variações entre os países e revelou visões consensuais em questões como redes internacionais, orientação para práticas e defesa de direitos em nome de pessoas com DI afetadas por demência e suas famílias. Os autores descrevem os desafios que o Brasil deve enfrentar em relação ao envelhecimento e à demência e apresentam recomendações para atender às necessidades de adultos com DI afetados por demência nesse cenário; ambos aspectos contribuem para o desenvolvimento do plano nacional de demência.

Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

BACKGROUND: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. METHODS: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. RESULTS: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. CONCLUSIONS: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

Older adults with intellectual disability in residential care centers in Israel: health status and service utilization.

To determine their health status, we studied 2,282 Israeli adults with intellectual disability who were at least 40 years of age and lived in residential care. Results showed that age is a significant factor in health status. The frequency of different disease categories (e.g., cardiovascular disease, cancer, and sensory impairments) increased significantly with age for both genders. Cardiovascular disease in this population was less prevalent when compared to the general population, suggesting that underdiagnosis of some diseases or conditions may be prevalent in this population. The patterns of organ-system morbidity with increasing age were similar to those in other studies conducted in several countries, suggesting that health status and outcomes could be independent of cultural factors.