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Book

You have had a baby with Down's Syndrome: perhaps we can help

Author:
DOWN'S SYNDROME ASSOCIATION
Publisher:
Down's Syndrome Association
Publication year:
1992
Pagination:
15p.
Place of publication:
London

Booklet compiled by parent members of the Down's Syndrome Association, designed to help new parents through the early days after the birth of a baby with Down's Syndrome.

Book

You've had a Down's baby?, perhaps we can help

Author:
DOWN'S CHILDREN ASSOCIATION
Publisher:
Down's Children Association
Publication year:
1982
Pagination:
var.pag.,bibliog.,illus.
Place of publication:
London
Journal article

An important apostrophe

Author:
WILLIAMS Paul
Journal article citation:
Community Living, 8(2), October 1994, pp.22-23.
Publisher:
Hexagon Publishing

The World Health Organisation has officially recommended the use of the term 'Down Syndrome' to replace the term 'Down's Syndrome'. Argues that there should be consultation before changing the name.

Journal article

Down syndrome: systematic review of the prevalence and nature of presentation of unipolar depression

Authors:
WALTON Catherine, KERR Mike
Journal article citation:
Advances in Mental Health and Intellectual Disabilities, 9(4), 2015, pp.151-162.
Publisher:
Emerald

Purpose: The purpose of this paper is to assess the prevalence and nature of presentation of unipolar depression in individuals with Down syndrome (DS). Design/methodology/approach: The PRISMA (2009) checklist for systematic review was followed where possible. Findings: Eight studies were included in the qualitative synthesis from a total of 634 records identified. The quality of the studies was then assessed: the studies all scored either 5 or 6 out of 6. The incidence of depression ranged between studies from 5 to 13 per cent. It was found that depression is more common in DS than the general intellectual disability population; this on a background of mental ill health of all causes being less common in DS. It was suggested that, excluding organic disorders, depression is the most common psychiatric problem in DS. In terms of the nature of depression, the evidence was less clear. Various “vegetative” and biological symptoms were observed, with no fixed pattern. There was evidence for withdrawal symptoms and psychosis. Research limitations/implications: The small number of studies included in this review, and their heterogeneity, highlights the need for further original research in this field. Practical implications: - An increased awareness of the frequency of depression in individuals with DS will aid in a timely diagnosis, therefore reduce psychiatric morbidity. Clinicians should be aware of the varied presentation, with no clear clinical picture, in order to maintain a high index of suspicion in an individual presenting with “atypical” symptoms. Originality/value This review has provided preliminary evidence that depression may be the most commonly experienced psychiatric disorder in DS. (Publisher abstract)

Journal article

Ageing and dementia in a longitudinal study of a cohort with Down syndrome

Authors:
CARR Janet, COLLINS Suzanne
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(6), 2014, pp.555-563.
Publisher:
Wiley-Blackwell

Background: A population sample of people with Down syndrome has been studied from infancy and has now been followed up again at age 47 years. Methods: Intelligence and language skills were tested and daily living skills assessed. Memory/cognitive deterioration was examined using two test instruments. Results: Scores on verbal tests of intelligence changed little. Those on a non-verbal test, on self-help skills and on both memory tests showed some decline, even when the scores of those already suffering from dementia were discounted. Conclusions: At age 47, scores on most tests of even the majority of the cohort (i.e. those not definitely diagnosed with dementia) showed some decline. While this includes the scores of people who may subsequently develop dementia, it may also reflect the normal ageing process in this population. (Publisher abstract)

Journal article

Vision deficits in adults with Down Syndrome

Authors:
KRINSKY-McHALE Sharon J., et al
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(3), 2014, pp.247-263.
Publisher:
Wiley-Blackwell

Background: In individuals with Down syndrome, virtually all structures of the eye have some abnormality, which likely diminishes vision. The examined basic vision functions in adults with Down syndrome. Materials and Methods: Participants completed a battery of psychophysical tests that probed a comprehensive array of visual functions. The performance of adults with Down syndrome was compared with younger and older adults without intellectual disability. Results: Adults with Down syndrome had significant vision deficits, reduced sensitivity across spatial frequencies and temporal modulation rates, reduced stereopsis, impaired vernier acuity and anomalies in colour discrimination. The pattern of deficits observed was similar to those seen by researchers examining adults with Alzheimer's disease. Conclusions: Our findings suggest that a common mechanism may be responsible for the pattern of deficits observed, possibly the presence of Alzheimer's disease neuropathology in the visual association cortex. We also showed that individuals with mild to moderate intellectual disability are capable of participating in studies employing state-of-the-art psychophysical procedures. This has wider implications in terms of their ability to participate in research that use similar techniques. (Edited publisher abstract)

Journal article

Participatory data analysis alongside co-researchers who have Down Syndrome

Author:
STEVENSON Miriam
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.23-33.
Publisher:
Wiley-Blackwell

There are not many research projects which include people with an intellectual disability in data analysis. This paper tells the story of how a small group of people with Down syndrome called co-researchers, joined in analysing data from their peers in a research project. The ‘Voices for Change’ study took place between 2007 and 2011 and the project sought to assist the young people in achieving their life goals and greater social connection using a ‘circles of support’ model. A university based researcher analysed a portion of the data set using thematic networks with the participation of co-researchers in iterative cycles of reflexivity. The participation of the co-researchers is demonstrated and a global theme, deduced from the collaborative analysis, is described. Authentic participation of co-researchers in the data analysis stage of the research process is an example of ‘inclusive research’ and assures adherence to the principles of EDR in informing the theory and practice of social inclusion for young adults with an intellectual disability. (Edited publisher abstract)

Journal article

Individual and environmental characteristics associated with cognitive development in Down syndrome: a longitudinal study

Authors:
COUZENS Donna, HAYNES Michele, CUSKELLY Monica
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 25(5), September 2012, pp.396-413.
Publisher:
Wiley-Blackwell

Although research has identified a behavioural phenotype associated with Down syndrome, it is not clear how individual and environmental characteristics combine to influence age-related change for the different abilities that underpin these phenotypic patterns.  The aim of this longitudinal study was to investigate associations among cognitive development and intrapersonal and environmental characteristics for individuals with Down syndrome to understand developmental patterns associated with cognitive strengths and weaknesses. The data for this analysis came from 89 individuals who were participants in longitudinal research as part of the Down Syndrome Research Program. The files for this subset of participants contained information for characteristics measured by the Stanford-Binet IV (SB:IV) scales collected for each participant from the age of 4 to 30 years. Analysis revealed that temperament, maternal education, medical conditions and school experiences were associated with cognitive differences. Additional associations with rate of development were detected for negative mood, persistence, maternal education level and elementary school experience for several subtests. The article concludes that early cognitive advantage and consistent opportunities to learn academic content appear to facilitate cognitive development, although this was confounded with ability and maternal education.

Book

Down's syndrome and dementia: a resource for carers and support staff

Authors:
DODD Karen, TURK Vicky, CHRISTMAS Michelle
Publisher:
British Institute of Learning Disabilities
Publication year:
2009
Pagination:
136p., bibliog.
Place of publication:
Kidderminster
Edition:
2nd ed.

This resource book is written to help carers, whether family or professional, support and care more effectively for people with Down’s syndrome and dementia. It is not about assessment and diagnosis or intended for formal training. The text focuses on practical day to day issues, including: supporting the person with Down’s syndrome and dementia to maintain skills and independence in every way and for as long as possible; treating treatable conditions; understanding and responding appropriately to changes in behaviour during the early, middle and late stages of dementia; providing emotional reassurance for carers; improving the confidence of carers to look after individuals; identifying local supports and resources; being open to the problems that may arise and help with coping. The book was developed from work undertaken by the Growing Older with Learning Disabilities (GOLD) project in the years 1999-2002. It has been revised to take into account further developments both in working with people with learning disabilities in general and specific developments for people who develop dementia.

Journal article

Social reasoning skills in adults with Down syndrome: the role of language, executive functions and socio-emotional behaviour

Author:
HIPPOLYTE L.
Journal article citation:
Journal of Intellectual Disability Research, 54(8), August 2010, pp.714-726.
Publisher:
Wiley

The prevalence of mental illness and behaviour problems is lower in adults with Down syndrome (DS) than other intellectual disability populations but they do still present emotional, relational and social interaction difficulties. Few studies have looked at specific competences central to developing appropriate social relationships (social reasoning, emotion processing, theory of mind) in the adult DS population. The authors examined the ability to understand the appropriateness of others' social behaviour in 34 Swiss, French speaking adults with DS (mean age 32 years), using the Social Resolution Task (SRT). Their results were compared with those of 34 typically developing (TD) children matched for receptive vocabulary (mean age 5.7 years). The relationships among the SRT experimental task, cognitive competences (receptive and productive vocabulary, non-verbal reasoning, inhibition, selective attention) and a caregiver-rated measure of socio-emotional behaviour were examined. The DS group’s global scores did not differ from those of the controls but subscores revealed fewer inappropriate situations than the control group. When they did identify behaviour as inappropriate, they were equally able to explain the rules underlying their responses. Receptive vocabulary, selective attention and a specific dimension of the socio-emotional profile (social relating skills) were the best predictors of the DS adults' performance on the SRT. Overall the DS participants demonstrated relatively good social reasoning skills in comparison with the TD children. There were however distinct response patterns.

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