These guidelines have been produced by the SAge-ID study team. Find out more about SAge-ID.
Summary of key recommendations
- GPs need to be aware that people with intellectual disability (ID) are at increased risk of dementia.
- Alzheimer’s disease in particular is very common in Down syndrome, is often of early onset, and typically begins with changes in personality and executive function. People with Down syndrome should receive a comprehensive baseline ‘healthy’ assessment at around 30 years of age, and again at 40. From 30 onwards, questions regarding signs of decline should be incorporated into annual health checks.
- In people with other forms of intellectual disability (ID), average dementia onset is approximately 10 years prior to that experienced by the general population. A practical approach would be to screen for evidence of decline at around the age of 40, by asking questions about decline and using a carer-report checklist. This checklist should be repeated at the age of 50 and each year thereafter. Those with signs of potential decline should receive a comprehensive assessment.
- After performing a standard dementia work-up, refer a person with suspected cognitive declines to an experienced psychologist or psychiatrist for a full cognitive assessment.
- Diagnosing dementia in people with ID requires establishing longitudinal declines in function across at least 3 sequential assessments. Standard tests used with the general population are unsuitable for this group.
- A number of screening checklists are available. The US National Task Group on Intellectual Disabilities and Dementia Practices Early Detection Screen for Dementia (NTG-EDSD) is free to download and can be used qualitatively to examine declines.
- Important principles for managing dementia in patients with ID include:
- Be equipped to manage mental disorders in people with ID. Recommended adjustments to practice can be found here https://3dn.unsw.edu.au/the-guide.
- Screen and examine for other potential causes of cognitive decline
- Use principles of dementia care applicable to people without ID, including communicating the diagnosis to the patient as early as possible in a manner they understand; seeking their preferences for care; coordinating services across relevant sectors (which may include the disability sector); and, where applicable, encouraging family carers to access emotional support and to make use of respite services.