The Dementia in Intellectual Disabilities Special Interest Group (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.
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.
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
- Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia
- Predictors of Age of Diagnosis and Survival of Alzheimer’s Disease in Down Syndrome
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
- Joseph Rowntree Foundation - ‘Supporting Derek’
- National Down Syndrome Society (US) - Aging and Down Syndrome
- Health and Social Care Alliance Scotland – Conversations about dementia: ‘Jenny’s Diary - Learning disability and dementia’
Resources for people with intellectual disabilities
- British Institute of Learning Disabilities ‘About Dementia Series: About dementia for people with learning disabilities’
- Beyond Words – Empowering people through pictures ‘Ann has Dementia: Books beyond words’
Resources for professionals
Group lead
Professor in Intellectual Disabilities