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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.

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.

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.

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.

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

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.

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.

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”.

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

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.

The commentary considers the research presented from a practitioner perspective.

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.

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.

The behavioral phenotype of fragile X syndrome (FXS) and intellectual disability (ID) proposed by Hagerman et al. (2009) was primarily based on data from male children and teens. The purpose of this study was to promote a better understanding of how this condition manifests in adults.

A total of 18 men of FXS were paired with men with Down syndrome on the basis of age and level of ID. A screening checklist was created on the basis of existing scales and the Hagerman et al. (2009) behavioral phenotype and completed by care providers.

Five of the 12 features of the phenotype were significantly more present among men with FXS than in men with Down syndrome.

This study provides partial confirmation for Hagerman et al.’s (2009) behavioral phenotype of FXS among men with moderate ID and identified some traits that warrant further investigation.

This paper seeks to discuss the complexity of the relationship between genotype and phenotype and highlight the importance of a greater understanding of behavioural phenotypes in genetic syndromes. The aim is to explore the developmental trajectory of the behavioural phenotypes as individuals emerge from childhood into adulthood and beyond.

Information was gathered from a search of the relevant literature over the past 20 years using Medline and PsycINFO databases in May 2010 as well as information published in textbooks on this matter.

The outcomes were considered under five areas of functioning: cognition, communication, behaviour, social functioning and propensity to psychiatric illnesses. The research thus far suggests that outcomes in behavioural phenotypes in adults are extremely variable. Individual predictions are difficult to make. However, some trends do emerge.

Findings of particular interest are the rates of attention deficit hyperactivity disorder and autism spectrum conditions and how these change over the developmental trajectory. The paper highlights the need for further research in this area and discusses the need to view behavioural phenotypes as a continuum across the lifespan.

This article describes a project that explored the views, experiences and aspirations of young people with Down's Syndrome and their family carers. Each young person had gone or was going through the transition to adulthood. Following a scoping study, young people who were leading the lives of their choice, for example through use of person‐centred planning or direct payments, were interviewed, and their stories were published in a booklet. The next phase brought other young people and their families together in workshops to support them in planning for their future, based on the information from the booklet. Interviews with the young people and their families dispelled the myth that parents are obstacles to progress and change. All families actively supported their son or daughter to achieve their aspirations and had high expectations for them.

Prevalence of hearing impairment is quite common in people with learning disabilities (double jeopardy). However, this debilitating co‐morbidity remains largely undetected by carers and professionals due to presence of additional disabilities and complex clinical presentation in this population on the one hand, and lack of specialist hearing impairment service provision and difficulty in accessing generic audiology services on the other hand. This article aims to provide practical guidance on assessment and management of hearing impairment in people with learning disabilities by offering a narrative review of available literature on gaps in service delivery.

The focus of interest in dementia in people with learning disabilities has been largely on epidemiology, prevalence, assessment and diagnosis. There has been less focus on care issues and interventions, with a paucity of research papers but a growing number of books and resource packs addressing these issues. Psychological and non‐pharmacological approaches are useful in services for people with learning disabilities and dementia, but must be delivered in line with a clear conceptual framework of dementia that aids staff in understanding what is happening to the person with dementia and the effect of their care and responses. This paper describes the most commonly used approaches, including developing an understanding of dementia, anxiety and stress reduction, life story work, reminiscence, reality orientation and validation techniques, helping peers to understand dementia, other therapeutic approaches, and understanding behaviour and dementia care mapping and their impact on the well‐being of people with learning disabilities and dementia and the people who support them.