Later stages and end of life

This section of the site addresses the advanced stages of dementia, death, grief and donation for scientific research.

Dementia affects everyone differently, and your experience of the later stages of the condition might differ too. You may find that your abilities worsen quickly over a few months, or slowly over several years.

If you or someone you care for is living with dementia, you’ll probably need full-time support during the condition’s later stages. It might be upsetting or frightening to think about this, but planning ahead and making some early decisions can help.

Here’s what you can expect during the later stages of dementia.

Symptoms of late stage dementia

Your symptoms will progress in the later stages of dementia, and you might find your memory, communication and physical abilities decline. You may:

• lose your ability to recognise people you know
• gradually lose your ability to walk, wash or dress, or do other day-to-day things
• experience incontinence
• be affected by other conditions like stroke or arthritis
• find it harder and harder to understand what people are saying, or what’s going on around you
• progressively lose your ability to talk
• call out from time to time
• forget how to eat or drink, and not recognise the food you are given
• have trouble swallowing
• lose a lot of weight.

You’ll still be able to hear and touch things, and you’ll still respond to emotions. Eventually, though, you might need to stay in a bed or a chair.

Getting support

If you’re caring for someone with later-stage dementia, there’s a variety of support and assistance available.

Our Home Care and Residential Care pages provide more detail on Australian government-funded supports. Your local council and state or territory government may also offer programs and services.

Palliative care can offer much-needed support, particularly in the final stage of dementia. It can help to maintain your loved one’s comfort and quality of life, and provides family and friends with practical and emotional support.

Not sure where to turn? Contact the National Dementia Helpline to learn about supports and services in your area.

Treating illness in late-stage dementia

As someone’s dementia advances, they’re likely to become frail and find it harder to fight off infections and illnesses. In many cases, people don’t die from dementia itself, but from an illness like pneumonia.

If your loved one becomes seriously ill in the later stages of dementia, you, your family and their healthcare team may need to discuss whether to actively treat their illness. For example, should they be resuscitated after a heart attack, or given antibiotics for pneumonia?

This can be a very difficult conversation and decision. You’ll need to consider:

• any legal instructions they’ve previously made, like an advance care plan
• what they would want, based on earlier discussions with them
• their current and likely future quality of life
• the advice of medical professionals
• the views of other people close to them.

End of life, grief and beyond

Even as the end draws near, your loved one may still be able to hear or understand you. Continue talking to them, or hug, touch or hold them.

This can be a difficult and heartbreaking time, and after your loved one’s death you might feel a mix of sadness, anger, guilt or relief. Be kind to yourself and give yourself time to grieve. Our Grief page provides more support and advice that might help you in this time.

It's possible for someone who has lost their life to dementia to contribute to research into the causes and future treatments of a condition for which there's currently no cure.

For some people, brain tissue donation is a way to make meaning of loss. But there is no right or wrong decision. People living with dementia, and the people who love and care for them, can talk about the possibility of donation early on and make an informed decision.

Based on Alzheimer’s Society UK, The later stage of dementia

It’s okay to take care of your own health and happiness. If you're struggling as someone who cares for a person with dementia, contact the free, confidential National Dementia Helpline on 1800 100 500, any time of the day or night, for information, advice and support.