As the Head of Clinical Services for Dementia Support Australia, I work with our consultants and referrers to provide easy-to-understand medical support and advice. Sharron from QLD contacted me with a very interesting question.

“How do I know if someone with dementia is dying?”

This is something I get asked a lot. Although dementia is a leading cause of death in Australia, predicting the end-of-life stage in most dementias is not an exact science.

Some people with dementia who are referred to DSA for behaviour support will be in an end-of-life stage known as ‘terminal agitation’ or ‘terminal delirium’. The behaviours experienced by this group differ little from the behaviours experienced by other DSA clients.

The challenge remains to identify when those behaviours represent an end-of-life stage -which needs to be supported in a different way to dementia behaviour support - and those in whom it does not.

Some indicators that changed behaviour may represent terminal agitation might be:

• The person is of an extreme age, with multiple severe medical comorbidities.
• There have been numerous hospital admissions for medical problems over the previous six months.
• There has been a significant loss of weight (more than 5% total body weight) in the previous three months.

Perhaps the most important thing for care staff to do is to simply ask the question “Could this person be in the process of dying?” as part of their routine assessment of causes for altered behaviour and prompt the attending GP to consider the same question. Palliative Care Australia have some great resources and, of course, you can reach out to DSA for advice at any time.

A/Prof Steve Macfarlane is the Head of Clinical Services at DSA. He is a geriatric psychiatrist and spent 11 years working as the Director of two metropolitan public-aged psychiatry services in Melbourne, prior to helping establish the Severe Behaviour Response Team in 2015.