Advanced Dementia
Dementia is recognised as a life-limiting condition for which palliative care is appropriate and beneficial. Advanced dementia leads to severe memory loss, loss of verbal communication, difficulty swallowing, and full dependence on care. For you, this stage requires a strong focus on comfort, dignity, and symptom management. Recognising pain, managing distress, and supporting families are essential to providing compassionate care.
What I can do
People with advanced dementia may struggle to express their needs but you can help by:
- Using touch, eye contact, and facial expressions to foster connection
- Identifying signs of discomfort, such as restlessness or changes in breathing, and responding promptly
- Speaking calmly and reassuringly, even if the person cannot respond with words.
Each person’s history, preferences, and routines matter. To support people in your care:
- Maintain familiar daily routines as much as possible
- Encourage family and carers to do what brings the person comfort
- Create a soothing environment using familiar objects, music, or scents.
People with advanced dementia may experience distressing symptoms. You can support them by:
- Recognising distress through changes in facial expressions, body language, or behaviour
- Using validated assessment tools such as the IPOS-Dem or Abbey Pain Scale
- Looking for signs of choking or difficulty swallowing and working with the team to adjust food textures and offer support at mealtimes.
What I can learn
The palliAGED Practice Tip Sheets give helpful guidance on supporting older people with advanced dementia near the end of life. There are topics on:
- Advanced dementia for nurses as well as one for careworkers.
- Advanced dementia behavioural changes for nurses as well as one for careworkers.
To learn more about advanced dementia:
- Use the Ask Annie app from Dementia Australia
- Read Caring for someone with dementia who is near the end of life from Marie Curie (UK)
- Follow Keng’s journey in the palliAGED journeys in aged care for careworkers and reflect on what you could do to help.
Use these learning opportunities to build skills and knowledge:
- Dementia Specific Training for Careworkers from the Advance Project (Hammondcare)
- The range of online educational modules offered by Dementia Training Australia and Professional development and training offered by Dementia Australia (free but registration required):
- The Supporting people living with dementia module from Equip Aged Care Learning (free but registration required)
What I can give
If an older person, their family or carers wishes to learn more about advanced dementia, these resources may help:
- Later stages and end of life from Dementia Australia
- The later stage of dementia by Alzheimer’s Society (UK)
- A better visit app from Dementia Australia.
What I can suggest
Develop staff knowledge and skills in caring for people with advanced dementia by:
- Offering regular mandatory dementia-specific training focused on person-centred communication, behavioural support, and end-of-life care
- Implementing the Dementia toolkit from ELDAC
- Making the team aware of the supportive resources offered by Dementia Australia and Dementia Training Australia.
Create dementia-friendly end-of-life care environments. Consider:
- Designing dedicated spaces for people in the final stages of dementia, ensuring reduced noise, natural lighting, and personalised familiar objects
- Offering open-door visiting policies to allow families to stay overnight and be actively involved in care
- Using personalised sensory interventions such as aromatherapy, therapeutic touch, and familiar music to enhance comfort in the last days.
Recognise the important role of family and carers and offer them support through:
- Practical strategies and resources for supporting people with dementia at home
- Guidance on what to expect in the final stages, including symptoms and their management
- Acknowledging their ‘living grief’ and the emotional toll of witnessing dementia progression.
Page updated 29 July 2026