Bringing Comfort, Dignity, and Choice to the Forefront

Palliative care is often misunderstood as “end-of-life care only.” In reality, it is a holistic, person-centred approach that can significantly enhance quality of life from the moment of diagnosis — especially for individuals living with dementia and their families.

For those affected by dementia, palliative care offers much-needed support with physical symptoms, emotional distress, spiritual concerns, and long-term care planning. Early access to this specialised care helps ensure comfort, preserves dignity, and supports carers through each stage of the condition.

With digital tools like Evaheld, families can document palliative care preferences and share important decisions across care teams and support networks — keeping the person’s voice central, even when communication becomes difficult.

What Is Palliative Care?

Palliative care focuses on improving quality of life for people with serious or life-limiting conditions. For dementia, this includes:

• Managing pain and other physical symptoms
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• Supporting emotional and psychological wellbeing
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• Respecting spiritual, cultural, and personal values
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• Coordinating care across settings (home, hospital, residential care)
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• Helping families plan and prepare
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According to Dementia Australia, integrating palliative care early in the dementia journey can reduce unnecessary hospital visits, lower carer burden, and ensure the person’s wishes are upheld.

When to Introduce Palliative Care in Dementia

Palliative care is not just for the final days or weeks of life. It can begin at any point after diagnosis — ideally in the early to mid stages — and continue alongside other treatments or interventions.

Signs that it’s time to consider a palliative approach include:

• Frequent hospitalisations or infections
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• Reduced mobility or communication
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• Increasing anxiety, confusion, or distress
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• Difficulty eating, drinking, or swallowing
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• Concerns about quality of life and legacy
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These are all opportunities to begin palliative conversations and create a more coordinated, compassionate care plan.

Holistic Support Through Palliative Care

What makes palliative care so valuable for dementia is its emphasis on the whole person — not just the illness. It considers:

• Physical comfort: managing pain, breathlessness, and agitation
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• Emotional support: addressing fear, frustration, and isolation
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• Spiritual care: honouring cultural or faith-based preferences
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• Social wellbeing: involving loved ones and preventing loneliness
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• Legacy and dignity: supporting meaning, reflection, and remembrance
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Using the Evaheld Legacy Vault, families can document emotional and spiritual values alongside medical preferences — ensuring all aspects of the person’s identity are respected.

Where Can Palliative Care Be Provided?

Palliative care is flexible and can be delivered across a range of settings:

• At home: with support from community palliative teams or home care services
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• In residential aged care: many facilities offer or coordinate specialised care
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• Hospitals: palliative units or consultation teams may be involved
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• Hospices: offer high-level, compassionate support in peaceful settings
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Choosing the right setting depends on medical needs, emotional comfort, carer capacity, and personal preferences. These decisions should be included in the person’s advance care directive and shared via platforms like Evaheld for transparency.

Including Palliative Care in Advance Care Planning

Palliative care preferences should be clearly documented as part of broader advance care planning. This ensures that care aligns with the person’s goals and values — not just clinical priorities.

Topics to cover include:

• Preferred location for care and end of life
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• Levels of intervention (e.g., pain relief, life-prolonging treatments)
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• Emotional and spiritual support preferences
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• Key decision-makers (e.g., power of attorney)
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• Specific rituals or legacy requests
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The Evaheld Legacy Vault offers a secure space to upload documents, record voice notes, and keep preferences updated across time — especially as conditions evolve.

Supporting Carers and Families

Palliative care also focuses on carers, recognising their critical role in the journey. For the sandwich generation, who may be caring for parents with dementia while raising children, this support is invaluable.

Benefits include:

• Emotional counselling
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• Respite coordination
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• Clear care plans and communication
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• Bereavement preparation and grief support
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Tools like Evaheld allow carers to stay informed, access key documents, and manage preferences collaboratively with other family members.

For practical clinical support, Nurse Info provides resources tailored to carers managing palliative and dementia care at home or in facilities.

Addressing Spiritual and Cultural Needs

Palliative care honours the whole person — and that includes faith, culture, and life story. Whether it’s ensuring traditional music is played, specific visitors are allowed, or spiritual rituals are carried out, these details can greatly impact comfort and peace of mind.

With legacy tools like the Family Legacy Series, families can document meaningful practices, stories, and values that should be upheld during palliative care and at the end of life.

This ensures that even in the final stages, a person’s essence is present — not lost to clinical processes.

Myths About Palliative Care

There are still many misconceptions that prevent families from accessing palliative support early. Let’s debunk a few:

• Myth: Palliative care is only for cancer patients.
• Truth: It supports anyone with a life-limiting illness, including dementia.
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• Myth: It signals giving up.
• Truth: It focuses on comfort, dignity, and personalised care — not resignation.
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• Myth: It’s only for the final days.
• Truth: Palliative care can be introduced early and evolve with the condition.
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• Myth: It’s expensive or hard to access.
• Truth: Many services are publicly funded or subsidised — especially with early planning.
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Bringing It All Together

Understanding and embracing palliative care is not about anticipating loss — it’s about enhancing the time we still have. It’s about recognising that quality of life matters just as much as length of life.

By introducing palliative care early, documenting preferences, and engaging family support, we can create a pathway that is peaceful, dignified, and aligned with what matters most.

For ongoing insights, visit the Evaheld Blog, which offers practical and emotional guidance on dementia, legacy preservation, and person-centred care.