📋 Key Information Summary
- Palliative care in dementia should begin at diagnosis or early in the disease trajectory — not only in the terminal phase — while the person retains capacity to participate in advance care planning (ACP).
- Dementia is a life-limiting illness; median survival from diagnosis is 4–8 years depending on subtype, yet prognostication is imprecise, making timely ACP essential.
- Advance care planning must be initiated while the person has decision-making capacity, documented using state/territory-specific templates (e.g., Advance Care Directive, Substitute Decision-Maker appointment), and reviewed regularly.
- Behavioural and psychological symptoms of dementia (BPSD) affect up to 90 % of people with dementia; non-pharmacological strategies are first-line, with risperidone the only PBS-listed antipsychotic for BPSD in Australia (restricted to ≤12 weeks).
- Avoid antipsychotics in Lewy body dementia and Parkinson's disease dementia due to severe neuroleptic sensitivity; low-dose quetiapine is the least harmful option if pharmacotherapy is unavoidable.
- Dysphagia affects 45–95 % of people with advanced dementia; oral feeding with texture modification per IDDSI framework is preferred over artificial nutrition, which does not improve survival or quality of life.
- Pain is under-recognised in dementia due to communication barriers; use observational tools (e.g., ABBEY, PAINAD, MOBID-2) rather than relying on self-report.
- Stepwise analgesia: paracetamol first-line (≤4 g/day, reduce to ≤2 g/day if weight <50 kg or hepatic impairment), then weak opioids (low-dose oxycodone or tramadol), escalating to strong opioids (low-dose morphine or subcutaneous fentanyl) as needed.
- Anticholinesterase inhibitors (donepezil, rivastigmine, galantamine) should be reviewed and may be ceased in advanced dementia when burden outweighs benefit; memantine can be continued longer but reassess at each visit.
- Percutaneous endoscopic gastrostomy (PEG) tubes do not improve survival, reduce aspiration risk, or enhance comfort in advanced dementia and are generally not recommended.
- Care of the dying person with dementia follows the same principles as other terminal illnesses: anticipatory prescribing of subcutaneous medications for pain, agitation, nausea, and respiratory secretions; avoid IV hydration.
- Aboriginal and Torres Strait Islander Australians have dementia rates 3–5 times higher than the non-Indigenous population, often presenting at younger ages; culturally safe palliative care requires community engagement and integration of cultural practices.
- Caregiver burden is substantial — up to 40 % of dementia carers experience clinically significant depression; respite services, psychological support, and carer education should be embedded in every care plan.
Introduction & Australian Epidemiology
Dementia is a progressive, irreversible neurodegenerative syndrome characterised by cognitive decline, functional deterioration, behavioural disturbance, and loss of independence. As the disease advances, people with dementia experience frailty, cachexia, recurrent infections, dysphagia, pressure injuries, and eventually death. Despite being a life-limiting illness, dementia is frequently not recognised as such by clinicians, families, or health systems, leading to under-referral to palliative care services and burdensome interventions in the final months of life.
Palliative care is an approach that improves the quality of life of patients and their families facing life-threatening illness through the prevention and relief of suffering. In dementia, palliative care should commence early in the disease trajectory — ideally at or soon after diagnosis — and evolve in intensity as the condition progresses. Early integration allows advance care planning while cognitive capacity is preserved, aligns treatment with the person's values, and reduces unwanted hospitalisations and invasive interventions.
Key principle: Palliative care and disease-modifying treatment are not mutually exclusive. They should run in parallel from the time of diagnosis, with the balance shifting toward comfort-focused care as dementia advances.
Australian Burden of Disease
- An estimated 487,500 Australians were living with dementia in 2024, projected to exceed 1 million by 2056 (AIHW 2024).
- Dementia is the second leading cause of death in Australia (after ischaemic heart disease) and the leading cause of death in women, accounting for >17,800 deaths in 2022 (ABS).
- Alzheimer's disease accounts for approximately 60–70 % of cases; vascular dementia 15–20 %; Lewy body dementia 5–10 %; frontotemporal dementia 5–10 %.
- Median survival from diagnosis is 4–8 years but varies widely: frontotemporal dementia may progress over 6–8 years; vascular dementia survival depends on comorbid cardiovascular disease.
- Approximately 70 % of people with dementia die in residential aged care facilities (RACFs) in Australia, yet access to specialist palliative care in RACFs remains inconsistent.
- Total cost of dementia in Australia was estimated at A.8 billion in 2024 (Access Economics / Dementia Australia).
- Aboriginal and Torres Strait Islander Australians experience dementia at 3–5 times the rate of non-Indigenous Australians, with onset often a decade younger.
Disease Trajectory
Unlike cancer, heart failure, or COPD, dementia follows a prolonged, gradual decline with intermittent acute deterioration (e.g., from infections or falls). The terminal phase is often difficult to predict. Recognised prognostic indicators of advanced (end-stage) dementia include:
- Functional Assessment Staging Tool (FAST) stage 7c or beyond (requires assistance with ambulation)
- Severe cognitive impairment (Mini-Mental State Examination score <10/30 or unable to be assessed)
- Inability to ambulate, dress, or bathe without assistance
- Urinary and faecal incontinence
- Limited speech (≤6 intelligible words per day)
- Recurrent aspiration pneumonia, pressure injuries (stage ≥3), or febrile episodes
- Reduced oral intake (<25 % of meals consumed)
The Advanced Dementia Prognostic Tool (ADEPT) score and the Residential Aged Care End-of-Life Care Pathway (RAC EoLCP) can assist clinicians in identifying the terminal phase in Australian RACF settings.
Advance Care Planning
Advance care planning (ACP) is a process of discussion and documentation that enables a person to express their values, goals, and preferences for future health care. In dementia, ACP must begin while the person retains decision-making capacity — ideally at diagnosis or during the mild stage — and be revisited at each stage of the disease.
Legal Framework in Australia
ACP legislation is state and territory-based. Key documents include:
| Jurisdiction | Advance Care Directive / Living Will | Substitute Decision-Maker | Key Legislation |
|---|---|---|---|
| NSW | Advance Care Directive (not legislated but clinically recognised) | Enduring Guardian | Guardianship Act 1987 |
| VIC | Advance Care Directive (legally binding) | Medical Treatment Decision Maker | Medical Treatment Planning and Decisions Act 2016 |
| QLD | Advance Health Directive | Enduring Power of Attorney (Health) | Powers of Attorney Act 1998 |
| SA | Advance Care Directive (legally binding) | Substitute Decision-Maker | Advance Care Directives Act 2013 |
| WA | Advance Health Directive | Enduring Power of Guardianship | Guardianship and Administration Act 1990 |
| TAS | Advance Care Directive | Enduring Power of Attorney | Guardianship and Administration Act 1995 |
| NT | Advance Personal Plan | Decision-maker appointed under plan | Advance Personal Planning Act 2013 |
| ACT | Health Direction | Health Attorney | Medical Treatment (Health Directions) Act 2006 |
What to Discuss in ACP Conversations
- Values and goals: What gives the person's life meaning? What are they most afraid of?
- Preferred place of care: Home, RACF, hospice, hospital
- Preferred place of death: Most people with dementia prefer to die at home or in their RACF rather than in hospital
- Cardiopulmonary resuscitation (CPR): In advanced dementia, CPR has a survival rate to discharge of <2 % and should be discussed; a Not-For-Resuscitation (NFR) order is appropriate
- Artificial nutrition and hydration: Discuss the limited benefit of PEG tubes and parenteral fluids in advanced dementia
- Antibiotics for recurrent infections: Whether to treat or manage symptomatically
- Hospital transfers: Whether the person would prefer to remain in their current setting for acute events
- Organ and tissue donation (if relevant and the person expressed a wish)
Conducting ACP in Dementia
1
Assess capacity
Use a structured capacity assessment. Decision-making capacity is decision-specific and time-specific. Document assessment findings.
2
Initiate the conversation
Use open-ended questions: "If you became very unwell and couldn't tell us what you wanted, what would be important to you?" Allow multiple sessions.
3
Involve family and carers
Include the nominated substitute decision-maker and close family in discussions. Ensure they understand the disease trajectory.
4
Document and distribute
Complete jurisdiction-specific ACP documents. Provide copies to the person, GP, RACF, specialist, hospital, and ambulance service. Upload to My Health Record where possible.
5
Review regularly
Review ACP at least annually, at each significant change in health status, or at the request of the person or their substitute decision-maker.
Australian resource: Advance Care Planning Australia (www.advancecareplanning.org.au) provides free training, templates, and a national advisory service (1300 208 582).
Addressing Barriers to ACP
- Clinician discomfort: Use communication frameworks (e.g., SPIKES, NURSE) and seek training through Advance Care Planning Australia or Palliative Care Australia
- Family denial: Provide clear, compassionate information about the terminal nature of dementia; allow time for processing
- Cultural considerations: Some cultures consider direct discussion of death taboo or inappropriate; involve cultural liaisons and adjust approach accordingly
- Capacity fluctuation: Capacity may fluctuate in early-to-moderate dementia; attempt discussions during periods of best function
Behavioural and Psychological Symptoms of Dementia (BPSD)
BPSD encompasses the non-cognitive symptoms of dementia, including agitation, aggression, psychosis (delusions, hallucinations), depression, anxiety, apathy, disinhibition, sleep disturbance, wandering, and screaming. BPSD affects up to 90 % of people with dementia over the course of the disease and is the leading cause of distress for the person, caregiver burden, and premature placement in residential aged care.
Safety alert: Antipsychotic medications are associated with increased mortality (hazard ratio 1.5–1.7), cerebrovascular events, falls, and sedation in people with dementia. Use only when non-pharmacological strategies have failed and the person or others are at risk of harm. The TGA has a black-box warning for all antipsychotics in dementia.
Assessment of BPSD
A structured approach to BPSD begins with identifying and treating reversible causes:
- Pain: Use observational pain tools (ABBEY, PAINAD); trial analgesia before assuming behaviour is intrinsic to dementia
- Infection: Urinary tract infection, pneumonia, dental abscess, otitis media
- Constipation: Very common in advanced dementia and RACF residents
- Medication side effects: Anticholinergics, benzodiazepines, opioids (especially in renal impairment), corticosteroids
- Environmental triggers: Overstimulation, unfamiliar surroundings, poor lighting, excessive noise, room temperature
- Unmet needs: Hunger, thirst, need for toileting, loneliness, boredom, fear
- Psychiatric comorbidity: Pre-existing depression, anxiety, PTSD, or psychosis
Validated assessment tools include the Neuropsychiatric Inventory (NPI), Cohen-Mansfield Agitation Inventory (CMAI), and the Dementia Behaviour Disturbance Scale (DBDS).
Non-Pharmacological Management (First-Line)
| Strategy | Target Symptoms | Evidence |
|---|---|---|
| Person-centred care & Dementia Care Mapping | Agitation, aggression, depression | Strong; RCT evidence in RACF settings |
| Music therapy (individualised, preferred music) | Agitation, anxiety, depression | Moderate; short-term benefit demonstrated |
| Multisensory stimulation (Snoezelen) | Agitation, apathy | Moderate; particularly in severe dementia |
| Aromatherapy (lavender, lemon balm) | Agitation, sleep disturbance | Low–moderate; easy to implement |
| Light therapy (bright light ≥2,500 lux morning) | Sleep–wake cycle disturbance, sundowning | Moderate |
| Physical exercise programmes | Agitation, depression, sleep | Strong; also improves function and reduces falls |
| Behavioural management techniques (ABC analysis) | All BPSD | Strong; foundation of all interventions |
| Staff education and training (e.g., Dementia Training Australia) | Reduces antipsychotic use, improves care quality | Strong |
Pharmacological Management
Antipsychotics
Risperidone
Risperdal® · Antipsychotic (atypical)
Indication
Short-term treatment (≤12 weeks) of persistent aggression or psychosis in moderate-to-severe Alzheimer's dementia when non-pharmacological measures have failed
Adult dose
0.25 mg PO nocte initially; titrate to 0.5–1 mg/day in 1–2 divided doses. Maximum 2 mg/day. Elderly: start at 0.25 mg/day
Key side effects
Somnolence, falls, extrapyramidal symptoms, cerebrovascular events (increased risk), QTc prolongation
Renal adjustment
Reduce dose in severe renal impairment (eGFR <30); titrate cautiously
PBS status
⚠ PBS Authority Required — for treatment of psychotic symptoms/aggression in dementia; ≤12 weeks
Lewy body dementia / Parkinson's disease dementia: Antipsychotics are contraindicated due to severe neuroleptic sensitivity (risk of irreversible parkinsonism, neuroleptic malignant syndrome, and death). If pharmacotherapy for BPSD is essential, low-dose quetiapine 12.5–50 mg/day is the least harmful option but must be used with extreme caution under specialist supervision.
Other Pharmacological Options
Citalopram
Cipramil® · SSRI antidepressant
Indication
Agitation in dementia; depression with BPSD
Adult dose
10 mg PO daily initially; max 20 mg/day in elderly (QTc risk above 20 mg)
PBS status
✔ PBS General Benefit
Trazodone
Molipaxin® · Serotonin antagonist/reuptake inhibitor
Indication
Agitation, anxiety, sleep disturbance in dementia
Adult dose
25–50 mg PO nocte initially; titrate to 100–200 mg/day in divided doses
PBS status
✔ PBS General Benefit
Sodium valproate
Epilim® · Mood stabiliser / anticonvulsant
Indication
Agitation in dementia (off-label); limited evidence; specialist initiation only
Adult dose
125–250 mg PO BD initially; titrate to serum level 40–60 mcg/mL
PBS status
✔ PBS General Benefit (for epilepsy/mood indication)
Benzodiazepines should generally be avoided in dementia as they increase falls, cognitive impairment, delirium, and paradoxical agitation. If used, short-acting agents (e.g., lorazepam 0.25–0.5 mg) are preferred for acute crisis only. Avoid long-acting agents (diazepam, nitrazepam).
Monitoring on Antipsychotics
- Baseline and ongoing: weight, fasting glucose, HbA1c, lipid profile, ECG (QTc), FBC, LFTs
- Review necessity at 4 weeks, 8 weeks, and 12 weeks; attempt dose reduction or cessation at 12 weeks
- If behaviour recurs after cessation, consider reintroduction at the lowest effective dose with continued non-pharmacological strategies
- Document rationale for ongoing antipsychotic use in the medical record
Dysphagia & Nutrition
Dysphagia (swallowing difficulty) is one of the most common and clinically significant complications of advancing dementia, affecting 45–95 % of people in the severe stage. It leads to aspiration pneumonia, malnutrition, dehydration, and distress. Nutritional decline in advanced dementia is a natural part of the dying process and is not caused by starvation — it reflects the body's progressive inability to utilise nutrients.
Critical information: Artificial nutrition via PEG or nasogastric tube does not improve survival, prevent aspiration, reduce pneumonia risk, or enhance quality of life in advanced dementia (Level I evidence). Tube feeding may cause distress, tube-related complications (blockage, displacement, site infection), and the use of physical restraints to prevent tube removal. Hand-feeding is the recommended approach.
Assessment of Swallowing
- Clinical bedside assessment: Observe the person eating and drinking; assess for coughing, choking, wet/gurgly voice, pocketing food, prolonged chewing, nasal regurgitation
- Speech pathology referral: Refer for formal swallowing assessment when dysphagia signs are observed or the person has recurrent chest infections
- Instrumental assessment: Videofluoroscopic swallowing study (VFSS) or fibreoptic endoscopic evaluation of swallowing (FEES) — useful in early-to-moderate dementia to guide texture modification; generally not indicated in advanced dementia where the management approach is comfort-focused
- Texture modification: Follow the International Dysphagia Diet Standardisation Initiative (IDDSI) framework for food textures (Level 0–7) and fluid thickness (Level 0–4)
IDDSI Framework Summary
| IDDSI Level | Fluid Description | Food Description |
|---|---|---|
| Level 0 — Thin | Water, unthickened fluids | — |
| Level 1 — Slightly Thick | Slightly thickened | — |
| Level 2 — Mildly Thick | Mildly thick (nectar-like) | — |
| Level 3 — Moderately Thick | Moderately thick (honey-like) | — |
| Level 4 — Extremely Thick | Extremely thick (pudding-like) | — |
| Level 4 — Puréed | — | Smooth, no lumps (e.g., puréed pumpkin) |
| Level 5 — Minced & Moist | — | Soft lumps ≤4 mm; cohesive and moist |
| Level 6 — Soft & Bite-Sized | — | Tender pieces ≤15 mm; easy to chew |
| Level 7 — Regular | — | Normal texture |
Nutritional Strategies
- Oral feeding assistance: Provide calm, unhurried mealtimes; one-to-one supervision if needed; offer small, frequent meals; use adaptive utensils; ensure good dentition and oral health
- Food fortification: Add cream, butter, cheese, or protein powder to meals to increase caloric density
- Oral nutritional supplements (ONS): Ensure®, Sustagen®, Fortisip® — consider when intake is consistently <50 % of meals; evidence for benefit in advanced dementia is limited but may improve comfort
- Hydration: Offer fluids regularly; thickened fluids as needed; subcutaneous fluids may be considered in moderate dementia if dehydration is symptomatic, but not in advanced/terminal dementia
- Artificial nutrition (PEG/NG): Not recommended in advanced dementia (see alert above). If NG tube is placed temporarily for acute reversible illness, plan for early removal
When to Transition to Comfort-Focused Feeding
In advanced dementia with terminal decline, the following signs indicate that comfort-focused feeding is appropriate:
- The person consistently refuses food or turns away
- Swallowing reflex is absent or markedly impaired (silent aspiration)
- The person is in the last days or weeks of life
- Forcing food causes distress, coughing, or aspiration
At this stage, offer small amounts of favourite foods and fluids by mouth for comfort only. Mouth care (swabbing with moist sponge, lip balm) is essential. Explain to families that reduced intake in dying is a natural process and does not cause suffering; thirst is rarely reported by dying patients when good mouth care is provided.
Medicare support: Speech pathology assessments are available under Medicare with a GP Management Plan (GPMP, MBS Item 721) and Team Care Arrangements (TCA, MBS Item 723). Some speech pathology services are bulk-billed; others may be accessed via state/territory community health or NDIS for younger onset dementia (<65 years).
Pain in Dementia
Pain is highly prevalent in dementia, affecting 40–80 % of community-dwelling people with dementia and up to 80–90 % of those in residential aged care. Despite this, pain is significantly under-recognised and under-treated due to communication barriers, atypical presentation, and the common misconception that people with dementia "don't feel pain the same way." Unrelieved pain worsens BPSD, reduces quality of life, and accelerates functional decline.
Barriers to Pain Recognition
- Cognitive impairment limits ability to self-report pain location, intensity, and character
- Atypical expression: people with dementia may express pain through behaviour (agitation, aggression, withdrawal, moaning, guarding, facial grimacing, changes in appetite/sleep) rather than verbal complaint
- Clinician bias: assumption that pain is "behavioural" and due to dementia rather than a treatable cause
- Ageism: under-treatment of pain in older adults due to concerns about polypharmacy, falls, and opioid toxicity
Pain Assessment Tools for Dementia
| Tool | Setting | Items | Self-report? |
|---|---|---|---|
| ABBEY Pain Scale | RACF, hospital | 6 items (vocalisation, facial expression, change in body language, behavioural change, physiological change, physical change) | No — observational |
| PAINAD (Pain Assessment in Advanced Dementia) | RACF, hospital, community | 5 items (breathing, negative vocalisation, facial expression, body language, consolability) | No — observational |
| MOBID-2 | RACF (standardised movement) | Pain behaviour during guided movements + pain inferred from behaviour over preceding week | No — observational |
| NRS / VAS (Numeric Rating Scale / Visual Analogue Scale) | All settings | Single-item self-report | Yes — for mild dementia only |
| Faces Pain Scale — Revised | All settings | 6 faces depicting pain intensity | Yes — for mild-to-moderate dementia |
Pharmacological Pain Management
Follow a stepwise approach, using the WHO analgesic ladder modified for the elderly and dementia population. Start low, go slow, but titrate to effect.
Paracetamol
Panadol® · Dymadon® · Analgesic (non-opioid)
Adult dose
500 mg–1 g PO/PR QID (max 4 g/day; reduce to 2 g/day if weight <50 kg or hepatic impairment)
Renal adjustment
Dose interval to Q6–8H if eGFR <30 mL/min
Notes
First-line for mild-to-moderate pain; trial scheduled paracetamol (1 g QID) for 2 weeks before escalating; rectal route available for dysphagia
PBS status
✔ PBS General Benefit
Oxycodone (low-dose)
Endone® · OxyNorm® · Opioid analgesic
Adult dose
2.5 mg PO BD–QID initially (elderly); titrate by 2.5 mg increments every 3–5 days
Renal adjustment
Reduce dose by 50 % if eGFR 10–50; avoid if eGFR <10 (active metabolites accumulate)
Notes
Step 2 equivalent; use for moderate pain unresponsive to paracetamol; monitor for constipation (prophylactic laxative required), sedation, delirium
PBS status
✔ PBS General Benefit
Morphine (low-dose)
MS Contin® · Oramorph® · Opioid analgesic
Adult dose
2.5–5 mg PO BD (modified-release) or 2.5–5 mg PO Q4H (immediate-release); SC 1–2.5 mg Q4H PRN
Renal adjustment
Avoid in eGFR <30 (active metabolite M6G accumulates); use fentanyl or buprenorphine instead
Notes
Step 3; for severe pain; subcutaneous route preferred in dying patients; start at lowest dose in opioid-naïve elderly
PBS status
⚠ PBS Authority Required
Fentanyl (transdermal)
Durogesic® · Opioid analgesic
Adult dose
12 mcg/hr patch Q72H in opioid-experienced elderly; not for opioid-naïve in dementia
Renal adjustment
Safe in renal impairment (preferred opioid in CKD)
Notes
Avoid in cachectic patients (altered absorption); useful when oral route unreliable; avoid in agitated patients who may remove patches
PBS status
⚠ PBS Authority Required
Buprenorphine (transdermal)
Norspan® · Partial opioid agonist
Adult dose
5 mcg/hr patch Q7H (weekly patch available); titrate as needed
Renal adjustment
Safe in renal impairment (no active metabolite accumulation)
Notes
May have ceiling effect for respiratory depression; lower risk of constipation than morphine; suitable for renal impairment
PBS status
✔ PBS General Benefit
Adjuvant Analgesics
| Medication | Indication | Dose (elderly/dementia) | Caution |
|---|---|---|---|
| Duloxetine | Neuropathic pain, comorbid depression | 30 mg PO daily → 60 mg daily | SIADH risk; hyponatraemia monitoring |
| Gabapentin | Neuropathic pain | 100 mg PO nocte → titrate slowly to 300 mg TDS | Sedation, dizziness; renal adjustment essential |
| Pregabalin | Neuropathic pain | 25 mg PO BD → 75 mg BD | Sedation, dizziness, falls; renal dose adjustment |
| Topical lidocaine 5 % | Localised neuropathic pain | Apply to affected area Q12H (12 on / 12 off) | Minimal systemic absorption; safe in dementia |
| Paracetamol (scheduled) | Musculoskeletal pain, OA | 1 g PO QID (see above) | Hepatic dose reduction |
Trial of analgesia: In dementia patients with unexplained agitation, consider an empirical trial of paracetamol 1 g QID for 2 weeks. If behaviour improves, this suggests unrecognised pain was the driver. This approach is recommended by the Australian Pain Society and eTG.
Non-Pharmacological Pain Management
- Physiotherapy and gentle exercise (maintains mobility, reduces musculoskeletal pain)
- Heat/cold packs (with supervision to prevent burns/frostbite)
- Massage and gentle touch
- Positioning aids and pressure-relieving mattresses (for pressure-related pain)
- Transcutaneous electrical nerve stimulation (TENS) — may be tolerated in mild-to-moderate dementia
- Music therapy, distraction, and relaxation techniques
End-of-Life Symptom Management in Dementia
Care of the dying person with dementia follows the same palliative care principles as other terminal illnesses. The goal is to ensure comfort, dignity, and relief from suffering in the person's preferred place of care. The Palliative Care Australia "Palliative Approach in Residential Aged Care" and the "Residential Aged Care End-of-Life Care Pathway" (RAC EoLCP) guide best practice in Australian RACFs.
Recognising the Dying Phase
- Progressive deterioration over days to weeks despite treatment of reversible causes
- Becoming bedbound / disoriented / semi-conscious
- Minimal or no oral intake
- Weak or absent peripheral pulse; mottled peripheries (livedo reticularis)
- Cheyne-Stokes or irregular breathing pattern
- Death rattle (retained upper airway secretions)
- No response to verbal or tactile stimulation
Anticipatory Prescribing for the Dying Phase
Ensure medications are available in the RACF or home setting for subcutaneous (SC) administration via syringe driver (continuous subcutaneous infusion, CSCI) or intermittent SC injection. The "just in case" box should be prescribed and available before the person enters the terminal phase.
Morphine (SC)
Opioid analgesic — for pain and dyspnoea
Dose (opioid-naïve)
2.5–5 mg SC Q4H PRN; CSCI 5–10 mg/24H
Indication
Pain, breathlessness
Midazolam (SC)
Hypnovel® · Benzodiazepine — for agitation/anxiety
Dose
2.5–5 mg SC Q4H PRN; CSCI 10–30 mg/24H
Indication
Terminal agitation, anxiety, myoclonus, seizures
Hyoscine butylbromide (SC)
Buscopan® · Anticholinergic — for secretions
Dose
20 mg SC Q4H PRN; CSCI 60–120 mg/24H
Indication
Death rattle (excess upper airway secretions)
Haloperidol (SC)
Antipsychotic — for nausea/vomiting, delirium
Dose
0.5–1 mg SC Q4H PRN; CSCI 2–5 mg/24H
Indication
Nausea/vomiting, terminal delirium (avoid in DLB)
Metoclopramide (SC)
Maxolon® · Prokinetic/antiemetic
Dose
10 mg SC TDS PRN; CSCI 30–60 mg/24H
Indication
Nausea, vomiting, gastroparesis
Specific End-of-Life Issues
Respiratory Secretions (Death Rattle)
- Reposition to lateral or semi-prone position
- Discontinue IV/subcutaneous fluids (contributes to secretions)
- Hyoscine butylbromide 20 mg SC or glycopyrrolate 0.2 mg SC Q4H
- Reassure family: the sound is distressing to observers but the dying person is typically unconscious and not distressed by it
Terminal Agitation / Restlessness
- Exclude urinary retention, faecal impaction, pain, or environmental causes
- Midazolam 2.5–5 mg SC; CSCI 10–30 mg/24H for refractory agitation
- Avoid haloperidol in Lewy body dementia; use midazolam instead
Hydration in the Dying Phase
- Routine IV or subcutaneous hydration is not recommended in the last days of life (no evidence of benefit; may prolong dying and cause fluid overload, peripheral oedema, and increased secretions)
- Offer sips of fluid by mouth for comfort if the person can swallow
- Mouth care is essential: regular swabbing, lip moisturising
- If the family strongly requests hydration, a small trial (e.g., 500 mL NS SC over 24H) with clear goals and a plan to stop if no benefit
RACF resource: The Program of Experience in the Palliative Approach (PEPA) provides funded training for RACF staff across Australia. Contact via palliativecare.org.au. The Dementia Support Australia (DSA) service (1800 699 799) provides 24/7 clinical support for BPSD management in RACFs.
Special Populations
Paediatric Considerations
Paediatric dementia is rare and typically associated with inherited metabolic disorders (e.g., Niemann-Pick type C, neuronal ceroid lipofuscinosis/Batten disease, mucopolysaccharidoses). Palliative care principles are the same but require paediatric-specific expertise.
- Referral: Paediatric palliative care service (e.g., Bear Cottage NSW, Very Special Kids VIC, Hummingbird House QLD)
- ACP: Involve parents/guardians as substitute decision-makers; age-appropriate assent from the child when possible
- Symptom management: Weight-based dosing for all analgesics and sedatives; consult paediatric palliative care pharmacist
- Genetic counselling for family planning is an essential component of care
Elderly / Frail
Most people with dementia are elderly (≥65 years), and frailty is highly prevalent. Pharmacokinetic changes alter drug metabolism.
- Renal decline: eGFR decreases ~1 mL/min/year after age 40; dose-adjust renally cleared medications (opioids, gabapentin, lithium)
- Polypharmacy: Use the Beers Criteria and STOPP/START tools to deprescribe potentially inappropriate medications
- Anticholinergic burden: Minimise all anticholinergic medications (antihistamines, TCAs, oxybutynin, antipsychotics) — they worsen cognition and BPSD
- Falls risk: Opioids, benzodiazepines, and antipsychotics increase falls; implement falls prevention strategies
- Goals of care discussions should emphasise comfort and function over disease modification
Renal Impairment
- Opioid safety: Avoid morphine in eGFR <30 (active metabolite M6G accumulates → respiratory depression, myoclonus, seizures); prefer fentanyl or buprenorphine
- Paracetamol: Extend interval to Q6–8H if eGFR <30
- Gabapentin/pregabalin: Mandatory dose reduction; gabapentin max 300 mg/day if eGFR <30
- In advanced renal failure with dementia, the palliative approach to both conditions should be integrated; dialysis may not be appropriate and should be discussed in ACP
Hepatic Impairment
- Paracetamol: Max 2 g/day in significant hepatic impairment or chronic liver disease
- Opioids: Reduce dose by 50 % and extend interval; morphine and oxycodone are hepatically metabolised; fentanyl may be preferred (though also hepatically metabolised)
- Antipsychotics: Reduce dose; monitor LFTs
- Avoid NSAIDs, tramadol (increased seizure risk), and benzodiazepines (prolonged sedation)
Immunocompromised
Immunocompromise in dementia is typically iatrogenic (corticosteroids, DMARDs, chemotherapy for comorbid conditions) or secondary to malnutrition and frailty.
- Infection management: Broader empirical antibiotic coverage may be needed but should align with the person's goals of care; in advanced dementia, comfort-focused management of infections is often appropriate
- Consider vaccination status (influenza, pneumococcal, COVID-19, zoster) as part of preventative care, even in dementia
Younger Onset Dementia (<65 years)
Approximately 28,000 Australians have younger onset dementia (YOD), with frontotemporal dementia and early-onset Alzheimer's disease being the most common subtypes. YOD presents unique challenges:
- Often still working, parenting young children, with significant financial commitments (mortgage, superannuation)
- More likely to have a genetic or atypical cause requiring specialist investigation
- NDIS eligibility (for those <65 at time of application) — coordinate palliative care with NDIS supports
- Psychosocial impact is profound: loss of identity, relationship breakdown, financial hardship, social isolation
- Dementia Australia offers specialised support for YOD: Younger Onset Dementia Key Worker programme
Caregiver Support & Respite
Dementia caregiving is associated with substantial burden, with approximately 40 % of dementia carers experiencing clinically significant depression and 50 % reporting anxiety. Carer breakdown is a common precipitant for emergency department presentations and premature residential aged care placement. Supporting carers is a core component of dementia palliative care.
Carer Assessment and Support
- Regularly assess carer wellbeing using validated tools (e.g., Zarit Burden Interview, Caregiver Strain Index)
- Educate carers about the disease trajectory, expected changes, and how to manage symptoms at home
- Provide anticipatory guidance about end-of-life signs and what to expect at the time of death
- Refer to counselling, peer support groups, and carer education programmes
Respite Services in Australia
| Service Type | Description | Funding |
|---|---|---|
| In-home respite | A support worker attends the home, allowing the carer to leave | CHSP / Home Care Package / Carer Gateway |
| Centre-based day respite | Structured daytime activities in a community setting | CHSP / Dementia-specific day programmes |
| Residential respite | Short-term stay in an RACF (up to 63 days/year under Aged Care Act) | Commonwealth Home Support Programme / aged care funding |
| Emergency respite | Urgent respite when carer is unwell or crisis occurs | Carer Gateway (1800 422 737) |
| Peer support / counselling | Online and face-to-face support groups; individual counselling | Dementia Australia (1800 100 500), Carer Gateway |
Bereavement Support
Bereavement in dementia is often "anticipatory" — family members may grieve the loss of the person's personality and connection long before physical death. After death, carers may experience a complex mix of relief, guilt, sadness, and liberation. Routine bereavement follow-up (phone call, letter, or visit at 4–6 weeks post-death) should be offered, with referral to specialist grief counselling if complicated grief is identified.
Aboriginal and Torres Strait Islander Health Considerations
Aboriginal and Torres Strait Islander Health
Aboriginal and Torres Strait Islander Australians experience dementia at 3–5 times the rate of the non-Indigenous population, with onset often occurring a decade earlier (from age 45–50 in some communities). Vascular risk factors, chronic disease burden, historical trauma, and socioeconomic disadvantage contribute to this disparity. Palliative care for Aboriginal and Torres Strait Islander people with dementia must be culturally safe, community-led, and integrated with existing health services and cultural practices.
Key Considerations
📚 References
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