The following projects are happening at University College London (UCL)
- The ADSID (Ageing in Down Syndrome and Intellectual Disability) database records people with Down's syndrome and people with intellectual disability who have had memory assessments. We will use this to further explore diagnostic criteria, medication use and survival in people with dementia and Down syndrome. Please email firstname.lastname@example.org for more information.
- Cognitive deficits in older adults with Down syndrome: This study looks at feasibility and validity of the Arizona Cognitive Test Battery (ACTB) when assessing cognitive deficits in older adults with Down syndrome. The ACTB is a battery of mainly computer-based tasks that assess various cognitive functions. Please email email@example.com for more information.
- LD CNV is a nationwide research project recruiting adults with idiopathic learning disabilities and co-morbid mental health problems and/or challenging behaviours. The project aims to identify copy number variants causative for learning disability and mental health problems while also compiling information on the phenotype of particular genetic variations and assessing the utility of the genetic diagnosis. For more information on this project please email firstname.lastname@example.org.
The learning disabilities research group is multi-disciplinary and includes senior academics from psychiatry, psychology and sociology. The group undertakes four main areas of research.
The group has close academic links with other disciplines at both the University of Cambridge and at other academic centres.
Its PhD students come from a range of disciplines including psychology, psychiatry, molecular biology, geography, sociology and social anthropology.
The CAMDEX-DS has been developed by the learning disabilities research group at the University of Cambridge as part of a programme of research on Down syndrome and dementia. It is designed to help diagnose dementia in people with Down syndrome or in others with pre-existing intellectual disabilities for reasons other than that of Down syndrome. It is a modification of the Cambridge Assessment for Mental Disorders in the Elderly, and comprises of four sections:
- Firstly, it includes a structured informant interview that asks about function in those domains that are known to deteriorate with the development of dementia (memory, general mental functional, skills, personality etc) and where problems are noted specifically asks whether such dysfunction is long-standing or of more recent onset. This allows a reliable judgement to be made about the presence or not of functional decline sufficient to meet criteria for dementia.
- Secondly, it includes the CAMCOG-DS, a neuropsychological assessment, to enable a profile of neuropsychological function to be established that can be monitored over time and can inform both diagnosis and support.
- Thirdly, the CAMDEX-DS includes a summary of the various criteria for the diagnosis of dementia and other mental disorders and guidance on investigations.
- Finally, it includes summary advice about strategies that might be used to support people with dementia.
Diagnoses made using the CAMDEX-DS have been found to be both valid and reliable1.
1. Ball, S.L., Holland, A.J., Huppert, F.A., Treppner, P., Watson, P., Hon, J. (2004) The modified CAMDEX informant interview is a valid and reliable tool for use in the diagnosis of dementia in adults with Down syndrome. JIDR, 48(6):611-620.