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A screening programme for adults with Down's syndrome
- Authors:
- BACKER Clare, JERVIS Nicola
- Journal article citation:
- Nursing Times, 10.07.07, 2007, pp.30-31.
- Publisher:
- Nursing Times
People with learning disabilities, especially those with Down's syndrome have more health needs than the general population. Those with Down's are more likely to experience problems involving the heart, thyroid, sensory impairment, diabetes and epilepsy. They also have an increased risk of developing dementia. This article discusses the Manchester baseline dementia screening project for people with Down's syndrome, which provided evidence on the prevalence of these conditions and identified a lack of health screening for people with Down's syndrome in the Manchester area.
Tales of Normansfield: the Langdon Down legacy
- Author:
- MERRIMAN Andy
- Publisher:
- Down's Syndrome Association
- Publication year:
- 2007
- Pagination:
- 256p.
- Place of publication:
- Teddington
Traces the history of Normansfield hospital for people with learning disabilities until its closure in 1997.
The subjective experience of individuals with Down syndrome living with dementia
- Authors:
- LLOYD Vicki, KALSY Sunny, GATHERER Amanda
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 6(1), February 2007, pp.63-88.
- Publisher:
- Sage
An increasing number of studies have begun to explore the subjective experience of individuals with dementia. However, despite the increased prevalence of dementia in individuals with Down syndrome, no such published research has been undertaken within this population. The aim of this study was to explore the perspectives and subjective experiences of six individuals with Down syndrome and dementia. Semi-structured interview accounts were analysed using Interpretative Phenomenological Analysis, in order to gain a level of understanding concerning the impact of dementia upon respondents’ lives and sense of self. Five main themes emerged: (1) Self-image, (2) The Relational Self, (3) Making Sense of Decline,(4) Coping Strategies and (5) Emotional Experience. Whilst the process of adjusting to dementia appeared comparable to the general population, the content of this was influenced by multiple levels of context specific to having a concomitant intellectual disability.
What kind of a future?: supporting young people with Down's syndrome to lead full lives after they leave school
- Author:
- MORGAN Hazel
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2007
- Pagination:
- 42p.
- Place of publication:
- London
This booklet was produced by the Foundation for People with Learning Difficulties. It is for young people and their families, friends and supporters to read and talk about together. The booklet tells the stories of young people with Down's syndrome and how they come to lead full lives after they leave school. It is written in plain English and there is an easy read summary. At the end of each section there are ideas for young people and information about some easy read websites and booklets. There is a final section on useful addresses and information for families.
The Sentence Completion and Three Wishes tasks: windows into the inner lives of people with intellectual disabilities
- Authors:
- DYKENS E., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 51(8), August 2007, pp.588-597.
- Publisher:
- Wiley
Measuring the self-perceptions, thoughts, hopes and inner lives of persons with intellectual disabilities (ID) has long been a research challenge. Unlike objective or projective tests, semi-projective tasks may provide persons with ID with just enough structure or cues to convey their self-perceptions in a spontaneous and unbiased manner. Sentence Completion and Three Wishes tasks were individually administered to 128 persons with ID aged 5–50 years (mean = 18.75 years). Participants had Prader–Willi, Williams or Down syndromes. Content analyses resulted in 19 codes that were used to reliably score both tasks by independent raters who achieved excellent levels of inter-rater agreement. Participants also received IQ testing, and their parents or care providers completed the Child Behavior Checklist (CBCL). Frequent themes across both tasks included activities, positive affect, desired objects, and relationships with family and pets. No gender or IQ effects were found, and just a few codes showed modest age effects. Several responses, including dating, friends, food, and positive or negative self-appraisals, were significantly related to either syndrome status or CBCL maladaptive behaviour. Although not widely used, the Sentence Completion and Three Wishes tasks are useful semi-projective techniques for garnering otherwise hard-to-access self-perceptions and associations of people with ID. Implications are discussed for practice and research.
Dementia Screening Questionnaire for Individuals with Intellectual Disabilities
- Authors:
- DEB Shoumitro, et al
- Journal article citation:
- British Journal of Psychiatry, 190(5), May 2007, pp.440-444.
- Publisher:
- Cambridge University Press
Many adults with Down's syndrome develop Alzheimer's dementia relatively early in their lives, but accurate clinical diagnosis remains difficult. The aim was to develop a user-friendly observer-rated dementia screening questionnaire with strong psychometric properties for adults with intellectual disabilities. The authors used qualitative methods to gather information from carers of people with Down's syndrome about the symptoms of dementia. This provided the items for the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID), which was then tested for its psychometric properties. The DSQIID was administered to carers of 193 adults with Down's syndrome, 117 of whom were examined by clinicians who confirmed a diagnosis of dementia for 49 according to modified ICD-10 criteria. It was established that a total score of 20 provides maximum sensitivity (0.92) and optimum specificity (0.97) for screening. The DSQIID has sound internal consistency (=0.91) for all its 53 items, and good test-retest and interrater reliability. The authors established a good construct validity by dividing the items into four factors. The DSQIID is a valid, reliable and user-friendly observer-rated questionnaire for screening for dementia among adults with Down's syndrome.
Examining the Down syndrome advantage: mothers and fathers of young children with disabilities
- Author:
- STONEMAN Z.
- Journal article citation:
- Journal of Intellectual Disability Research, 51(12), December 2007, pp.1006-1017.
- Publisher:
- Wiley
Across studies and across outcomes, parents of children with Down syndrome have been found to experience greater well-being than parents of children with other intellectual disabilities (ID). This study examined the extent to which differences in family income and child temperamental difficulty can explain why parents of children with Down syndrome experience greater well-being. Fifty married couples who were parents of young children with ID completed a set of questionnaires measuring child temperament, parent satisfaction with social support, depression and parenting beliefs. Parents were observed interacting with their children. When groups were compared without consideration of demographic differences, the findings generally replicated the Down syndrome advantage found by other researchers. After variance attributable to income was removed, however, the Down syndrome advantage disappeared for all parenting and parent wellness measures. The effects of child temperament were confined to maternal and paternal depression. Family income was more important than child etiology in predicting the parent measures used in the study.
An avoidable death? Reflections on the fatal accident inquiry into the death of Roderick Donnet
- Authors:
- PATRICK Hilary, SMITH Nicola
- Journal article citation:
- SCOLAG Journal, 361, November 2007, pp.251-254.
- Publisher:
- ScoLAG(Scottish Legal Action Group)
In May 2003 Roderick Donnet, a man with Downs Syndrome, died from bronchopneumonia. This occurred as result of an untreated outbreak of ulcerative colitis. Mr Donnet, who had been diagnosed with dementia, was 50 and resident in a care home at the time of his death. In 2007, a fatal accident inquiry was held in to Mr Donnet's death. This article considers some of the matters raised at the inquiry, which highlighted concerns both about the way the health and social care system in Scotland treat people with mental disabilities, and about the fatal accident inquiry system itself.
Mortality in adults with moderate to profound intellectual disability: a population-based study
- Authors:
- TYRER F., SMITH L.K., McGROTHER C.W.
- Journal article citation:
- Journal of Intellectual Disability Research, 51(7), July 2007, pp.520-527.
- Publisher:
- Wiley
People with intellectual disability (ID) experience a variety of health inequalities compared with the general population including higher mortality rates. This is the first UK population-based study to measure the extent of excess mortality in people with ID compared with the general population. Indirectly standardized all-cause and disease mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age and sex for all adults, aged 20 years or over, with moderate to profound ID living in Leicestershire and Rutland, UK, between 1993 and 2005. The general population of Leicestershire and Rutland, which has a population of approximately 700 000 individuals in this age range, was used for comparison. To explore differences within the study population, overall SMRs were also calculated by presence of Down syndrome and last place of residence (city or county). Of 2436 adults identified, 409 (17%) died during 23 000 person-years of follow-up. Both all-cause and disease-specific mortality were around three times higher than the general population but varied considerably with age. The largest differences were observed in people in their twenties, where all-cause mortality was almost nine times higher in men and more than 17 times higher in women. At a particular disadvantage were people with Down syndrome and women with ID living in the city. The relatively high SMRs observed in young people and in women, particularly those living in inner city areas and with Down syndrome, deserve further investigation for possible explanations, including socio-economic factors.