Advance Care Planning for People with Dementia

1 · Why Dementia Demands a Different ACP Approach

Dementia is a progressive neuro-cognitive syndrome that gradually erodes memory, reasoning, and verbal expression. Because capacity to make complex choices diminishes over time, Advance Care Planning (ACP) must start early, recur often, and rely on clear, shared communication across settings.

Key challenges unique to dementia:

• Fluctuating decision-making capacity (“window of lucidity”)
• Misalignment between past stated wishes and current emotional comfort
• Multiple transitions—from home to hospital, respite, and long-term care
• Higher risk of unplanned admissions for infections or falls

When ACP is proactive and visible, families report less decisional conflict, clinicians avoid unwanted interventions, and patients experience better-aligned, person-centred care.

2 · Core Components of ACP for Dementia

3 · Timing: When to Start and How to Pace Conversations

1. At or soon after diagnosis
   • Validate emotions first, then introduce ACP as a planning, not prognostic exercise.
   • Use plain-language workbooks such as Living Well with Dementia (Alzheimer’s Australia) or This Is Me (Alzheimer’s Society UK).
2. Whenever cognitive stage changes (MMSE drop ≥ 3 points or transition from MCI to mild dementia).
3. Key health events—hospital admission, new comorbidity (e.g., heart failure), or introduction of high-risk meds.
4. Annual care-plan review with GP or memory clinic. Medicare and NHS both fund structured dementia reviews.
5. Before residential aged-care entry—embed ACP into admission paperwork to avoid crisis decisions later.

Rule of thumb: “Early, small, and often” beats late, lengthy, one-off sessions.

4 · Review: Keeping Plans Alive and Relevant

Tip: Title each document with version date and “void previous versions” to prevent confusion.

5 · Communication: Making Preferences Easy to Find and Understand

5.1 Family & Carers

• Hold a 30-minute “kitchen-table talk” after each clinic visit.
• Use Teach-Back: ask relatives to summarise the plan in their own words.
• Share a secure folder (Google Drive, OneDrive) containing PDFs of the directive and medication list.

5.2 Health Professionals

• Flag the ACP in electronic records with the code “Advance Care Plan on file.”
• For hospital admissions, tape a yellow‐border Goals-of-Care form at the front of the paper chart (widely recognised colour cue).
• Add ACP summary to discharge letters—many clinicians read “Problem List” first.

5.3 Digital Solutions

1. Evahled Symptom & Goals Tracker
   • Allows carers to log daily comfort scores; severe distress (> 7/10) auto-alerts community nurse.
   • Stores latest ACP PDF under the “Planning” tab, visible across hospital, hospice, and home care.
2. My Health Record (AU) and Summary Care Record (UK)
   • Upload directive under “Advance Care Planning” section and tick emergency access.
   • For enriched SCR, ask your GP to add “End-of-Life Preferences” data set.
3. Wearable QR Codes (MedicAlert / MyID)
   • Link directly to ACP document and allergy list; paramedics scan with smartphone.

Plan ahead with confidence — create your free Advance Care Plan in the Evaheld Legacy Vault to record your healthcare wishes, appoint decision-makers, and give your loved ones clarity, comfort, and peace of mind.

6. Legal Nuances & Capacity Tests

Always cross-check local regulations before finalising documents, especially regarding Voluntary Assisted Dying (VAD) in Australia and assisted dying bills pending in the UK.

7 · Culture, Language, and Health Literacy

• Translate directives using approved templates (e.g., NSW Health Multilingual ACD forms).
• For First Nations Australians, involve Aboriginal Health Workers and respect collective decision traditions—record consensus process in directive.
• UK practitioners should offer professional interpreters, not family, when discussing legally binding documents.
• Use visual aids (icon arrays, traffic-light charts) to depict treatment burdens for low-literacy groups.

8 · Addressing Common Myths

1. “An ACP means giving up.” Instead, it protects future autonomy and can include preferences for aggressive care if desired.
2. “Dementia patients can’t change their minds.” Capacity is task-specific and can fluctuate; regular reviews capture evolving wishes.
3. “Doctors will always see my directive.” Not unless it is uploaded and flagged—visibility is an active process.
4. “One form covers all UK regions.” Scotland, Wales, and Northern Ireland each have nuances; use appropriate templates.

9 · Emerging Trends

• AI-Driven Capacity Prediction – Algorithms in Evahled trials use speech patterns to predict loss of capacity, prompting ACP reminders.
• Virtual Reality Storyboards – Pilot programs let patients experience care scenarios (ICU, PEG feeding) before deciding.
• Shared Decision Dashboards – NHS England is testing colour-coded ACP widgets within the Electronic Patient Record, reducing clicks to view ACP from five to two.
• Dynamic Consent – Blockchain prototypes allow micro-updates (e.g., “no bloods before 7 am”) and track who accessed the plan.

Take control of what matters most — set up your free Evaheld Legacy Vault to keep your stories, care wishes, and essential documents safe, organised, and instantly shareable with loved ones and advisers, for life.

10 · Action Checklist for Patients, Carers, and Clinicians

1. Start Early – Within three months of diagnosis.
2. Use Plain Language – Replace “artificial nutrition” with “tube feeding.”
3. Nominate & Educate – Choose a decision-maker and share the “dementia trajectory” booklet.
4. Upload & Flag – MyHR/SCR, Evahled, and hospital portals.
5. Schedule Reviews – Put a six-month reminder in calendar apps.
6. Synchronise Paper & Digital – Same version date everywhere.
7. Communicate in Crises – Tell ambulance staff, “Advance care plan uploaded on My Health Record dated 1 July 2025.”

Key Takeaways

• Timing: Initiate ACP at diagnosis, revisit with each clinical milestone.
• Review: Living documents need living stewardship—set reminders, appoint champions.
• Communication: Visibility is everything—upload digitally, label clearly, and brief all involved.

By weaving ACP seamlessly into the dementia journey—early, iterative, and transparent—patients retain voice, carers gain clarity, and health systems deliver truly person-centred care.

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