Some people with MND, but without a diagnosis of dementia, will experience changes to their thinking and behaviour. This is known as cognitive change and it is believed to affect around 50% of people diagnosed with MND. 

These changes could be things like finding it difficult to concentrate, struggling to find the right word in a conversation and changes in how you express your emotions.

Most people experience relatively mild changes. However, a small number of people (5-15%) will have more significant changes and so may receive a diagnosis of ‘motor neurone disease with frontotemporal dementia' or MND/FTD.


Frontotemporal dementia (FTD) affects the front and side lobes of the brain — the parts of the brain that control mood, social behaviour, attention, judgement and self-control. This dual diagnosis can occasionally be due to a genetic link that runs in families. Some members of the family may have MND without FTD, or vice versa. These inherited conditions are caused by a fault in a gene - called a gene mutation - C9orf72 is a known MND-related gene mutation that also has links to FTD.

Find out further information on the MND Connect website here: Cognition, thinking & behaviour | MND Australia

For information specific to frontotemporal dementia (FTD), visit Dementia Australia here: Frontotemporal dementia | Dementia Australia

For more information on the genetics of MND, visit Familial MND and genetic testing or read our blog: The genetics of MND

(c) MND Australia - Last updated July 2021

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