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Article
Publication date: 26 August 2014

Hayley Starkey, Shelley Bevins and Simon Bonell

People with Down's syndrome are at increased risk of developing early onset Alzheimer's disease. It has been recommended that all adults with Down's syndrome receive baseline…

Abstract

Purpose

People with Down's syndrome are at increased risk of developing early onset Alzheimer's disease. It has been recommended that all adults with Down's syndrome receive baseline neuropsychological testing for dementia. In certain areas prospective screening of people with Down's syndrome takes place to ensure the early diagnosis of the condition. However, little has been published on the value of this type of screening. The purpose of this paper is to report on a prospective screening programme and asks whether the programme is effective in identifying dementia-related changes in people with Down's syndrome and whether the current screening intervals are appropriate.

Design/methodology/approach

All adults with Down's syndrome in Plymouth (UK) are identified and offered a comprehensive test battery at baseline at the age of 20 and then have testing biennially from 40 to 50 and annually after 50. All individuals diagnosed with dementia between 2001 and 2013 were identified and their case notes examined. The symptoms at the time of diagnosis were identified and whether these symptoms had been identified through the screening programme or by other routes were recorded. Prevalence data and age at diagnosis were also recorded.

Findings

In total, 26 people were diagnosed with dementia during the study period. Of these, the diagnosis of dementia followed concerns being identified during the routine screening programme in 54 per cent of cases. In the younger age group (age 40-49) 63 per cent of people were identified through the screening programme. At the time of diagnosis a mean of 5.5 areas of concern were in evidence.

Research limitations/implications

Limited by small sample size, however service development not original research. Implications for the use of prospective dementia screening in people with Down's syndrome.

Practical implications

Implications for how services choose to run their Down's syndrome and dementia screening programmes, including the frequency of screening.

Originality/value

The paper adds to a growing evidence base around the value of prospective dementia screening in people with Down's syndrome. It is also one of a few studies exploring the frequency of screening. Additionally, it adds further data about prevalence of dementia in people with Down's syndrome.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 8 no. 5
Type: Research Article
ISSN: 2044-1282

Keywords

Article
Publication date: 3 July 2024

Muhammed Emin Boylu, İlker Taşdemir, Mehmet Doğan and Alaattin Duran

Down syndrome is one of the common genetic causes of intellectual disability. Adult with Down syndrome may have many psychiatric comorbidities. Therefore, their mental health…

Abstract

Purpose

Down syndrome is one of the common genetic causes of intellectual disability. Adult with Down syndrome may have many psychiatric comorbidities. Therefore, their mental health status should be considered in legal proceedings such as criminal responsibility and legal capacity where they are involved. This study aims to highlight that individuals with Down syndrome are often referred directly to forensic psychiatry without undergoing an interview, despite the fact that this is a group with varied mental statuses.

Design/methodology/approach

This study analysed the socio-demographic, clinical and forensic characteristics of eight adult individuals with Down syndrome for whom the Council of Forensic Medicine (CFM) requested an opinion on criminal liability and other legal situations between 2018 and 2022. The CFM is an authoritative institution to which cases from all areas of Türkiye are referred.

Findings

The mean age of the individuals with Down syndrome for whom a forensic psychiatric opinion was requested was 24.63 (±7.95) and the mean IQ level was 54.13 (±13.38). All cases were male, 6 / 8 were referred for assessment of criminal responsibility and 4 / 6 of those referred for assessment of criminal responsibility were referred for sexual offences. It was found that 5 / 8 of the cases had moderate intellectual disability and 3 / 8 of the cases had mild intellectual disability.

Research limitations/implications

Regarding the limitations of this study, the first one is the small sample size. Nevertheless, due to the low prevalence of people with Down syndrome in society, it is plausible that their stigmatization may not be reflected in the judicial system, even in cases involving violent behaviour. The second limitation is that the reports lack all psychiatric medical documents, including forensic psychiatric evaluations of individuals with Down syndrome. Additionally, additional diseases were recorded based on familial anamnesis. The third limitation is that this study is the first publication to investigate Down syndrome from a forensic psychiatric perspective. Thus, there is a lack of literature to make direct comparisons and references in the discussion section.

Social implications

This is the first study about forensic psychiatric aspects for people with Down syndrome. The aim of this study was to examine the forensic psychiatric approach in Down syndrome, one of the most common genetic causes of intellectual disability, the situations in which forensic psychiatric assessment is required and the issues that might be considered important in this regard. Although there are various publications in the literature on the psychiatric conditions of individuals with Down syndrome, to our knowledge, this is the first study to evaluate individuals with Down syndrome in terms of forensic psychiatric evaluation. People with Down syndrome are known to have varying degrees of intellectual disability and different types of psychiatric comorbidity.

Originality/value

People with Down syndrome are a heterogeneous group in terms of intellectual disability. The criminal responsibility and legal capacity of individuals may vary according to the legal situation. When requesting forensic psychiatric evaluation of these patients with psychiatric co-morbidity, patients should not be prejudged in terms of their level of mental competence and each case should be assessed individually.

Details

Journal of Intellectual Disabilities and Offending Behaviour, vol. 15 no. 1/2
Type: Research Article
ISSN: 2050-8824

Keywords

Article
Publication date: 1 October 2003

Sharna McQuillan, Sunny Kalsy, Jan Oyebode, Dave Millichap, Chris Oliver and Scott Hall

Adults with Down's Syndrome are at risk of developing Alzheimer's disease in later life. This paper gives an overview of the current research in the area and discusses the…

Abstract

Adults with Down's Syndrome are at risk of developing Alzheimer's disease in later life. This paper gives an overview of the current research in the area and discusses the implications it raises for individuals, carers and service providers. Information on the link between Down's Syndrome and Alzheimer's disease and prevalence rates are given. The clinical symptoms of Alzheimer's disease and a stage model documenting the progression of the disease are presented. Attention is drawn to the problems inherent in assessing and diagnosing Alzheimer's disease in a person with a pre‐existing learning disability. The importance of a thorough assessment procedure and guidelines for assessment methods are highlighted. The paper also discusses the management of Alzheimer's disease and focuses on care management practices and recommendations for service provision. Guidelines for supporting individuals include maintaining skills, adopting a person‐centred approach, implementing psychosocial interventions and multidisciplinary care management. Finally, high prevalence rates of Alzheimer's disease in adults with Down's Syndrome and increasing life spans are highlighted as a particular concern, and recommendations for the future include increasing education and awareness, implementing screening services, improving assessment methods and developing appropriate services.

Details

Tizard Learning Disability Review, vol. 8 no. 4
Type: Research Article
ISSN: 1359-5474

Book part
Publication date: 12 May 2022

Ryan Thorneycroft

PurposeThis chapter examines the relationship between prenatal testing, Down syndrome identification, and selective termination practices, and it does so by considering whether

Abstract

PurposeThis chapter examines the relationship between prenatal testing, Down syndrome identification, and selective termination practices, and it does so by considering whether the selective termination of fetuses with Down syndrome might constitute genocidal practices.

Methodology/approachExploratory and speculative in nature, this chapter brings the phenomenon of prenatal testing and selective termination practices together, and explores whether the increasingly widespread termination of fetuses with Down syndrome fits within definitions of genocide.

FindingsAddressing perceptions of Down syndrome and disability, and integrating aspects of crip politics and definitions of genocide, this chapter concludes that the phenomenon of selective termination involving fetuses with Down syndrome can constitute genocide when particular definitions and interpretations are adopted.

Originality/valueThis chapter is perhaps the first academic text to critically evaluate the relationship between prenatal testing, selective termination of fetuses with Down syndrome, and criminological genocide scholarship. Importantly, it does not evaluate individual decision-making practices regarding termination, but instead focuses on collective practices and conditions that work to minimize the number of people with Down syndrome in society.

Details

Diversity in Criminology and Criminal Justice Studies
Type: Book
ISBN: 978-1-80117-001-7

Keywords

Article
Publication date: 17 May 2024

Cristina Arranz-Barcenilla, Sara Pavía, María Consuelo Sáiz Manzanares, Lourdes Alameda Cuenca-Romero and Sara Gutiérrez-González

The purpose of the paper is to describe the development and implementation of a specialized Virtual Learning Environment (VLE) designed to enhance the knowledge and skills related…

Abstract

Purpose

The purpose of the paper is to describe the development and implementation of a specialized Virtual Learning Environment (VLE) designed to enhance the knowledge and skills related to sustainability in students with Down syndrome. This VLE serves as a means to make sustainable concepts more accessible and comprehensible to this specific student group, with the aim of promoting their engagement and understanding of sustainability, environmental awareness, recycling, and sustainable construction. The ultimate goal is to empower students with Down syndrome by providing them with a tailored educational tool that facilitates their learning in a manner that is engaging and effective.

Design/methodology/approach

The approach outlines the overarching plan for creating the e-learning platform, including the technological choices and design considerations necessary to make it effective and accessible for students with Down syndrome. It's a fundamental component of the methodology, as it sets the direction for the platform's development and aligns with the objectives of the study. And also encompass the strategy for teaching and learning sustainability aspects to students with Down syndrome.

Findings

Positive Feedback from Tutors and Professionals: The feedback from tutors and professionals is generally positive, with 91.4% finding the platform to be well-organized and 88.6% considering the content adequate and understandable. This suggests that the VLE met the needs and expectations of educators and professionals involved in the learning process. Utility for Professional Practice: Approximately 80% of tutors and professionals found the platform useful for their professional practice, indicating that it has practical applications beyond student learning. This information highlights the success and potential impact of the VLE for this specific target group.

Research limitations/implications

The study may not have explored the depth of sustainability concepts covered within the VLE. Future research could delve into the specifics of the content and its effectiveness in teaching complex sustainability topics.

Practical implications

The incorporation of universal design principles in the VLE development could serve as a model for creating inclusive e-learning platforms. This has broader implications for improving digital accessibility in education. The positive feedback from tutors and professionals suggests the importance of interdisciplinary collaboration in education. Professionals from various fields, including special education and sustainability, can work together to create effective and inclusive learning tools.

Social implications

This study can contribute to the broader discussion on inclusive education and the effective use of technology to enhance learning experiences for individuals with disabilities.

Originality/value

The study addresses a crucial gap in the field of sustainability education by focusing on students with Down syndrome. It highlights the importance of making sustainability education inclusive and accessible to a diverse range of learners, including those with disabilities. This originality contributes to the broader discourse on inclusive education and environmental awareness. The development of a specialized Virtual Learning Environment (VLE) for this specific target group is an original contribution. It demonstrates the potential for adapting educational technology to meet the unique needs of students with Down syndrome, potentially serving as a model for future educational tool development.

Details

The International Journal of Information and Learning Technology, vol. 41 no. 3
Type: Research Article
ISSN: 2056-4880

Keywords

Book part
Publication date: 9 November 2020

Nicki Pombier

Purpose: This chapter proposes narrative allyship across ability as a practice in which nondisabled researchers work with disabled nonresearchers to co-construct a process that…

Abstract

Purpose: This chapter proposes narrative allyship across ability as a practice in which nondisabled researchers work with disabled nonresearchers to co-construct a process that centers and acts on the knowledge contained in and expressed by the lived experience of the disabled nonresearchers. This chapter situates narrative allyship across ability in the landscape of other participatory research practices, with a particular focus on oral history as a social justice praxis.

Approach: In order to explore the potential of this practice, the author outlines and reflects on both the methodology of her oral history graduate thesis work, a narrative project with self-advocates with Down syndrome, and includes and analyzes reflections about narrative allyship from a self-advocate with Down syndrome.

Findings: The author proposes three guiding principles for research as narrative allyship across ability, namely that such research further the interests of narrators as the narrators define them, optimize the autonomy of narrators, and tell stories with, instead of about, narrators.

Implications: This chapter suggests the promise of research praxis as a form of allyship: redressing inequality by addressing power, acknowledging expertise in subjugated knowledges, and connecting research practices to desires for social change or political outcomes. The author models methods by which others might include in their research narrative work across ability and demonstrates the particular value of knowledge produced when researchers attend to the lived expertise of those with disabilities. The practice of narrative allyship across ability has the potential to bring a wide range of experiences and modes of expression into the domains of research, history, policy, and culture that would otherwise exclude them.

Article
Publication date: 3 July 2017

Karen Dodd

The purpose of this paper is to consider the implications for people with Down’s syndrome and their families of identifying those people who are at risk of developing dementia…

Abstract

Purpose

The purpose of this paper is to consider the implications for people with Down’s syndrome and their families of identifying those people who are at risk of developing dementia from the research study “Estimating the number of people with Down’s syndrome in Scotland and the cohort at elevated risk of early onset dementia”.

Design/methodology/approach

The commentary is based on a review of the associated literature.

Findings

Estimating the numbers is important but has serious implications for people who have an elevated risk and their families. Preparation and ongoing support and planning are vital to ensure that quality of life is maintained as dementia is identified and progresses.

Originality/value

The commentary considers the research presented from a practitioner perspective.

Details

Tizard Learning Disability Review, vol. 22 no. 3
Type: Research Article
ISSN: 1359-5474

Keywords

Book part
Publication date: 19 July 2018

Katharina Heyer

This paper examines the implications of the disability rights critique of prenatal testing on the development of genetic policy and abortion rights. It traces the reappearance of…

Abstract

This paper examines the implications of the disability rights critique of prenatal testing on the development of genetic policy and abortion rights. It traces the reappearance of the disabled body in public deliberations over reproductive and genetic politics that use disability to frame arguments about which bodies are worthy of protection, how and why we limit reproductive choices, and what reasons women may use to terminate their pregnancies. The disability critique of prenatal testing and selective abortion finds itself in productive tension with reproductive rights politics, which increasingly features disability in both pro-life and pro-choice messages. The uneasy alliance between disability and pro-life interests has profound implications for both disability legal scholarship and the sociolegal inquiry into the role of rights articulation – and rejection – by social movements.

Details

Studies in Law, Politics, and Society
Type: Book
ISBN: 978-1-78756-208-0

Keywords

Article
Publication date: 1 September 2007

Jeremy Turk

The area of behavioural phenotype research and related clinical practice is now recognised as one of high relevance to all practitioners who help people with learning…

Abstract

The area of behavioural phenotype research and related clinical practice is now recognised as one of high relevance to all practitioners who help people with learning disabilities, whatever their age. Knowledge continues to accumulate rapidly regarding aspects pertaining to aetiology, likely developmental, emotional and behavioural challenges, useful multidisciplinary interventions and supports and long‐term prognosis. This paper reviews the concept, its history and recent developments, focusing on those aspects which are of particular importance to clinical and other care and support professionals and their clients. There is a continuing need for widespread dissemination of the large body of relevant information, and its application to practice in order to maximise benefits for people with learning disabilities and their families.

Details

Advances in Mental Health and Learning Disabilities, vol. 1 no. 3
Type: Research Article
ISSN: 1753-0180

Keywords

Article
Publication date: 1 October 2005

Judith McBrien, Sarah Whitwham, Karen Olverman and Stuart Masters

Given the now well‐recognised risk of Alzheimer's Disease (AD) for adults with Down's Syndrome (DS) as they reach middle age, services for people with learning disability (LD…

Abstract

Given the now well‐recognised risk of Alzheimer's Disease (AD) for adults with Down's Syndrome (DS) as they reach middle age, services for people with learning disability (LD) need to meet this new challenge. Good practice guidance from the Foundation for People with Learning Disabilities (Turk et al, 2001) recommended that every service for people with learning disability should set up a register of adults with DS, conduct a baseline assessment of cognitive and adaptive functioning before the age of 30 years, develop specialist skills in this area, offer training to other professionals, front‐line staff and carers, and seek high‐quality co‐ordination between agencies. This article reports the progress of one LD service in meeting these challenges, highlighting the successes and difficulties that may guide other teams considering such a development.

Details

Tizard Learning Disability Review, vol. 10 no. 4
Type: Research Article
ISSN: 1359-5474

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