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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
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.
Establishing a database for proactive screening of adults with Down's syndrome: when services work together
- Authors:
- HOBSON Ben, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 6(2), 2012, pp.99-105.
- Publisher:
- Emerald
Adults with Down’s syndrome are at higher risk of developing dementia than the general population and do so at an earlier age. Diagnosis of dementia in an adult with Down’s syndrome can be difficult because of the lack of a functional baseline. This paper describes a service improvement project with 2 aims: to identify and screen all adults with Down's syndrome aged over 30 years in a defined locality using a standardised instrument to establish functional baselines; and to set up a database to facilitate early diagnosis of dementia in this population. An assistant psychologist used a standardised instrument to screen 65 participants with a diagnosis of Down’s syndrome who had been identified through contact with health, social, and third sector, and housing services. Three groups were identified: group 1 showed no significant change; group 2 showed significant change but no signs of dementia; and group 3 showed significant change plus signs of dementia. People with suspected dementia were referred on for further assessment and supportive services. Regular re-screening is planned for the other 2 groups. The article demonstrates how a proactive screening project can be established by employing working partnerships between intellectual disability and older adult services to aid diagnosis.
Six weeks to 45 years: a longitudinal study of a population with Down syndrome
- Author:
- CARR Janet
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(5), September 2012, pp.414-422.
- Publisher:
- Wiley
A population sample of 30 people with Down syndrome, repeatedly studied since infancy, has now been followed up at the age of 45 years. The paper provides an overview of their abilities over their life span to date, focusing particularly on the most recent 24 years. As at all previous occasions from age 30 onwards, intelligence, language, academic abilities and memory were tested, and self-help skills assessed. The most striking finding is the maintenance of test scores. Mean IQs, both non-verbal and verbal, changed little from age 21 to 45. Disregarding the scores of 2 women severely affected by dementia, the remainder of the cohort lost over the whole period an average of less than 1 point in non-verbal IQ and gained over 5 months in verbal age. Scores on memory tests by some of those not yet diagnosed with Alzheimer’s disease declined, in some cases significantly, suggesting that other members of the cohort too may be showing the early signs of the disease. The article concludes that most of the cohort show few indications of decline in ability. However, at the latest stage, a number now are or may be affected by Alzheimer’s disease, and this may require closer monitoring in the future.
People with a learning disability and dementia: reducing marginalisation
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Dementia Care, 20(5), September 2012, pp.34-38.
- Publisher:
- Hawker
People with a learning disability, especially Down’s syndrome, are at risk of dementia at a younger age. While the voice of people with learning disability and people with dementia are increasingly included in research and practice, the same cannot be said for people who have both a learning disability and dementia. The aim of this literature review was to identify factors that have contributed to this lack of consideration in health and social care policy and practice. The review starts with providing a historical overview, followed by a discussion of the key issues identified in the literature. A series of deficits are identified that are likely to result in a further increase in the marginalisation experienced by people with a learning disability and dementia. These deficits include the lack of a shared diagnosis, lack of staff training and future planning, lack of adapted communication as dementia progresses, lack of accurate statistics of the numbers affected or predicted, lack of clarity over accommodation options and an increase in isolation. The result is a Cinderella service that reflects the limited knowledge of individual experiences and support needs of this group.
Impact of dementia-derived nonpharmacological intervention procedures on cognition and behavior in older adults with intellectual disabilities: a 3-year follow-up study
- Authors:
- DE VREESE Luc P., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(2), June 2012, pp.92-102.
- Publisher:
- Wiley
Some adults with intellectual disabilities (ID), in particular those with Down syndrome, are at increased risk of dementia. The aim of this study was to investigate the efficacy of specialised environmental and psychosocial interventions in delaying onset of dementia or in slowing down its rate of progression in this population. Specifically, the paper presents the preliminary results of an ongoing prospective study, called the DAD (Down Alzheimer Dementia) Project, carried out in Trento Italy. The study participants were a sample of 14 adults with worsening cognition and everyday functioning who were no longer manageable by their family or staff in day centres or group homes, and who were relocated in a model special care unit (SCU) designed to proactively accommodate the needs of people with ID and dementia. Baseline level and rate of decline across a 3-year period were assessed by means of the Dementia Questionnaire for Persons with Intellectual Disabilities and compared to 2 control groups not in dementia-capable programmes matched for age, sex, and severity of ID. After 3 years, the findings showed some improvement in cognition and stabilisation in everyday functioning and behaviours in the SCU residents and a worsening in the control groups. The findings confirm the validity of this ‘in-place progression’ model and provide a platform for continuing progress in person-centred services and care for aging persons with ID.
Yes! I am a researcher. The research story of a young adult with Down syndrome
- Authors:
- WHITE Emma L., MORGAN Michelle F.
- Journal article citation:
- British Journal of Learning Disabilities, 40(2), June 2012, pp.101-108.
- Publisher:
- Wiley
This article presents the story of Emma, a 28 year old with Down syndrome, who learnt to become a researcher. The research project she undertook involved finding out about the everyday literacy of three young adults with intellectual disability, two of which have Down syndrome. The article details the stages of the research project, from inception to end, with emphasis on data collection, analysis, dissemination and research ethics. It also highlights the positives that she drew from the project, and the resulting increase in confidence to be able to do many things in spite of her disabilities.
Experiences of supporting people with Down syndrome and Alzheimer's disease in aged care and family environments
- Authors:
- CARLING-JENKINS Rachel, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 37(1), March 2012, pp.54-60.
- Publisher:
- Taylor and Francis
People with Down syndrome have earlier onset and higher prevalence of age related disorders such as Alzheimer’s disease. As many as 50-70% of people with Down syndrome will develop Alzheimer’s disease by the time they are aged 60 years. The aim of this study was to report on the experiences of families and carers in seeking a diagnosis and supporting people with Down syndrome and Alzheimer’s disease. The study participants were 3 adults with Down syndrome and Alzheimer’s disease who had lived all or most of their lives in the family home. For each of these participants, semi-structured interviews were held with up to 4 informants in paid and unpaid relationships with them, and this data was used to create detailed case studies. In each of the case studies, overshadowing occurred whereby services and families continued to attribute behaviour changes to the person’s Down syndrome rather than contemplating the impact of early onset Alzheimer’s disease. The families experienced stress and confusion as they negotiated a service system poorly equipped to meet their needs and professionals more focused on longstanding disability than the recent diagnosis of Alzheimer's disease.
The views of people who care for adults with Down’s syndrome and dementia: a service evaluation
- Authors:
- FURNISS Kate Atkins, et al
- Journal article citation:
- British Journal of Learning Disabilities, 40(4), December 2012, pp.318-327.
- Publisher:
- Wiley
People with Down’s syndrome are more likely to develop dementia, and at an earlier age, than other people. This article reports on a specialist service for people with Down’s syndrome and dementia in England. The service has offered dementia screening and assessment to people with Down’s syndrome for over 10 years and has also developed to offer support and training for carers. Semi-structured interviews were conducted with a total of 30 family carers, relatives and staff about the impact on them of caring for someone with Down’s syndrome and how the dementia service supports them in this role. The responses provide rich insights into the areas of ‘knowledge and information’, ‘coping and support’ and ‘concerns about the future’. Interviewees also identified services they wanted for the future. As a result of this evaluation, a number of changes have been proposed and begun to be implemented within the service. The findings have important implications for other health, social care and voluntary organisations.