When do palliative care services become involved in dementia?
My husband is in a very advanced stage of dementia, he barely eats and spends most of his time bedridden. Someone mentioned palliative care to me, but it frightens me. When does it make sense, and will I be giving up on him?
Thinking about palliative care isn't giving up on your husband; it's choosing to prioritise his comfort and well-being. It's a decision of love, not abandonment.
Why it happens
Dementia is a progressive disease, and in the advanced stage, the goal of care changes: instead of trying to reverse the irreversible, the aim is to alleviate suffering, control pain, and ensure dignity. Palliative care can begin long before the final days, whenever comfort becomes the priority.
Practical strategies
- Speak to the treating doctor or the team caring for your husband about a referral for palliative care.
- There are home palliative care teams and services within the RNCCI (National Network for Integrated Continuous Care).
- Focus on small gestures of comfort: mouth hydration, positioning, a calm environment, and your presence.
- Ask for support to manage symptoms like pain or agitation, which are not always easy to identify.
What NOT to do
- Do not interpret palliative care as "stopping treatment" — active care, focused on comfort, continues.
- Do not bear these decisions alone or blame yourself for choosing less aggressive interventions.
When to seek professional help
If you notice pain, difficulty breathing, persistent refusal to eat, or suffering, contact the healthcare team. The SNS 24 Helpline (808 24 24 24) can provide guidance in urgent situations, and the doctor can activate the RNCCI.
"When I accepted palliative care, I stopped fighting the disease and started truly caring for him, with calm." — Anonymous Carer