Scenario 5: Genetic testing

“I have just been diagnosed with dementia and I’ve heard there may be genetic tests my children can have to see whether they are going to get dementia.”

  • Genetic testing is not a routine part of the assessment of someone with dementia, although this may change in the decades to come as our knowledge of genes and their association with dementia increases.
  • Genetic testing for dementia is not recommended and will not be helpful unless there is a strong family history of younger onset dementia (symptoms occurring before the age of 65).
  • There are several ‘heritable’ genetic mutations that predispose or determine the development of dementia. However, these genetic mutations are related to rare and aggressive forms of younger onset dementia, and account for less than 2% of all cases of dementia.
  • For those who do have a family history of younger onset dementia, there are tests that can determine whether a person has these mutations. These tests are available through genetic counselling and testing services.
  • Those choosing to undergo testing for these genes (for example, if wanting certainty when planning a family) should do so in close consultation with their family and a genetic counsellor, and they need to consider that a positive test will indicate the future onset of what is currently a terminal and incurable disease.

Information about genetics of dementia and genetic testing can be found on a Help Sheet from Dementia Australia, Genetics of Dementia