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Research

Dementia in Intellectual Disabilities Special Interest Group (DID-SIG)

The DID-SIG is an  independent group composed of clinicians (including clinical psychologists, psychiatrists, occupational therapists and nurses) from across the UK and beyond who have a special interest in dementia in people with intellectual disabilities.

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The group - which is chaired by Dr Andre Strydom, Professor of Intellectual Disabilities and Consultant Psychiatrist - meets quarterly to discuss research, clinical cases and policy relevant to people who have intellectual disabilities and dementia.

To find out more including how to join, please contact Dr Sarah Pape, the Group's Secretary: sarah.pape@kcl.ac.uk.

Clinical guidance on dementia in intellectual disabilities we have developed

Pharmacological Management of Behavioral and Psychiatric Symptoms in Older Adults with Intellectual Disability

Diagnostic Manual for Intellectual Disabilities 2: Neurocognitive disorders

Best practice in caring for adults with dementia and learning disabilities

Consensus statement of the International Summit on Intellectual Disability and Dementia related to post-diagnostic support

Royal college of psychiatrists / British psychological society’s guidance on Dementia in Learning disabilities

 

Publications from the ADSID registry of dementia in Down syndrome

Using data pooled from our dementia clinics, we have explored clinical questions about reliability of dementia diagnoses, predictors of age of diagnosis and survival of Alzheimer’s disease, and impact of treatment with cholinesterase inhibitors in adults with Down syndrome. 

Dementia diagnostic criteria in Down syndrome  - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4678599/

Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia - https://europepmc.org/abstract/med/29486820

Predictors of Age of Diagnosis and Survival of Alzheimer’s Disease in Down Syndrome - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6004911/

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Care pathways and service innovations  

Management and provision of post-diagnostic support for dementia in individuals with intellectual disabilities requires complex input and service models – see below for examples of care pathways and service innovations developed by the group.

Joint GSTT and SLaM Down Syndrome and Intellectual Disabilities Dementia Pathway 

 

Some useful resources

Resources for carers

Gardening

Resources for people with intellectual disabilities

Resources for professionals

 

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