Dementia in people with Intellectual Disability: Guidelines for Australian GPs

Dementia in people with Intellectual Disability: Guidelines for Australian GPs

These guidelines have been produced by the SAge-ID study team. Find out more about SAge-ID

Summary of key recommendations

  1. GPs need to be aware that people with intellectual disability (ID) are at increased risk of dementia. 
  2. 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. 
  3. 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. 
  4. 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. 
  5. 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. 
  6. 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. 
  7. Important principles for managing dementia in patients with ID include:
    1. Be equipped to manage mental disorders in people with ID. Recommended adjustments to practice can be found here
    2. Screen and examine for other potential causes of cognitive decline
    3. 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. 

Download the Guidelines for Australian GPs