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1 – 10 of 334Sharna 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.
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.
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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.
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…
Abstract
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.
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Prevalence of hearing impairment is quite common in people with learning disabilities (double jeopardy). However, this debilitating co‐morbidity remains largely undetected by…
Abstract
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.
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Cath McGrother, Cathy Thorp, Nick Taub and Orlando Machado
Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years…
Abstract
Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy. In one quarter the behaviour problem poses a major challenge to the achievement of an ordinary life. Two‐thirds indicate a need for help from one or other specialist. Informal carers are actively providing care for nearly half the adults, but a quarter are not content with care‐giving. Carers Report 40% more limiting health problems than their counterparts in the general population, in particular depression in women and cardiovascular problems in men. The specific areas of unmet need among carers Reporting depression are for financial help, long‐term social support and medical advice. Resource allocation for this client group needs to be reviewed in the light of substantial and unrecognised increases in prevalence which are continuing to occur, and the need for long‐term support.
Patrick A. Grant and Nia A. Grant
The treatment and care of persons with a disability should and must be all encompassing. With the expansion of the knowledge that proper dieting can make a difference in the…
Abstract
The treatment and care of persons with a disability should and must be all encompassing. With the expansion of the knowledge that proper dieting can make a difference in the individual’s development and quality of life, attention must be focused on using proper food intake to remediate the negative impact of a disability. Food is related to proper healthcare; therefore, we must include proper nutrition in working with learners with exceptionalities. We must add to the list of treatments not only educational intervention, social interaction, and independent living, but also food intake. This chapter looks at the dietary needs of several disabling conditions, and addresses how particular dietary food selections help in their development and their ability to learn integration, playing skills with others, and working independently when called on to do so. Therefore, for the purposes of this chapter, we focus on exceptionalities such as cognitive disability, autism spectrum disorder (ASD), Down syndrome, attention deficit hyperactivity disorder (ADHD), muscular dystrophy, and cystic fibrosis.
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Angela Hassiotis and Diana Barron
This article examines the prevalence of mental disorders in a community and clinic population of adolescents with learning disabilities in one catchment area (in the UK). A two…
Abstract
This article examines the prevalence of mental disorders in a community and clinic population of adolescents with learning disabilities in one catchment area (in the UK). A two stage cross‐sectional survey was used. Measures included screening by parental report (Developmental Behaviour Checklist), adaptive behaviour (Vineland Survey Scale) and clinical interview (ICD 10 childhood disorders).Seventy‐five adolescents aged 12‐19 years old participated in the study. 50.7% screened positive for mental disorders, mainly in the disruptive and anti‐social domains. Almost all of those were found to have an identifiable ICD10 mental disorder. The most common diagnoses included pervasive developmental disorders, hyperkinetic disorder and emotional disorders. Male participants as well as those with autism were more likely to be reported as cases. Caseness was associated with lower adaptive level, presence of autism and family history of mental disorder.Rates of psychopathology are high in adolescents with learning disabilities. There are continuing difficulties in diagnostic ascertainment primarily due to mediation by developmental factors. Further research is necessary in order to clarify continuities of mental disorders in this population and to develop effective interventions.
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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.
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