Cassandra's Compass
Newly Diagnosed — Where to Start
A guide for people with dementia, families, and carers navigating a new diagnosis. If you yourself have been diagnosed, you are not a bystander in your own journey — your choices matter, your voice matters, and you are not alone.
If you or someone you know is in crisis right now:
Call Lifeline 13 11 14 (24/7) · Dementia Australia 1800 100 500 (24/7) · Emergency 000
What You Might Be Feeling Right Now
A dementia diagnosis brings an enormous range of emotions — often all at once. Whatever you are feeling is valid. There is no right way to respond to news like this. Understanding the emotional landscape of caregiving can help you be gentler with yourself.
Shock & Disbelief
Even when you suspected the diagnosis, hearing it confirmed can be profoundly shocking. This is normal and expected. You do not need to "process it" immediately.
Grief & Sadness
Grief begins at diagnosis — long before death. You are grieving the person you knew, the future you expected, and the relationship you had. This is called anticipatory grief.
Anger & Frustration
Anger at the situation, the healthcare system, other family members, or even the person with dementia is completely normal. It does not make you a bad carer.
Fear & Anxiety
Fear of the unknown — what will the future hold? Will you be able to cope? These are legitimate fears that deserve support, not dismissal.
Guilt
"Could I have done something earlier?" "Am I doing enough?" Guilt is one of the most common and most unhelpful emotions in caregiving. Most guilt is not warranted.
Determination & Acceptance
Most carers eventually reach a place of purposeful acceptance — "This is hard, but I can do this, and I will not do it alone." This is not resignation; it is adaptive resilience.
Source: Wicking Dementia Research and Education Centre. (2025). Understanding Dementia MOOC. University of Tasmania. · Dementia Australia. (2024). Emotional reactions to a dementia diagnosis. https://www.dementia.org.au/get-support/national-dementia-helpline
🎓 Start Here: Wicking Dementia Research & Education Centre — UTAS
The Understanding Dementia MOOC from the University of Tasmania is a free, online course used by families, nurses, doctors and researchers (Wicking Dementia Research and Education Centre, 2025). It covers the science of the brain, types of dementia, behaviours, communication, person-centred care, and wellbeing. It is one of the most useful things you can do after a diagnosis.
Access the Free MOOC — UTAS Wicking Centre🧠 Brain Anatomy & Interactive Diagrams
Different types of dementia damage different brain regions. To explore an interactive brain diagram showing which areas are affected in each dementia type, visit the Brain Lab.
Your Progress — 0 of 18 steps completed
Your 18-Step Action Plan
Tick each step as you complete it. Steps 1–4 are the most time-critical and should be prioritised in the first weeks after diagnosis.
1. Obtain a written diagnosis summary
Ask your GP or specialist for a written letter confirming: the specific type of dementia, the current stage (mild/moderate/severe), the basis for diagnosis (cognitive testing, imaging, biomarkers), co-existing conditions, and planned follow-up. Keep this in a dedicated folder — you will need it for My Aged Care, Centrelink, legal documents, and NDIS if applicable.
Wicking Dementia Research and Education Centre. (2025). Understanding Dementia MOOC. University of Tasmania. https://www.utas.edu.au/wicking
2. Register with My Aged Care
Call 1800 200 422 or visit myagedcare.gov.au. Registration triggers a formal assessment through My Aged Care — the Single Assessment System, previously called ACAT (Aged Care Assessment Team) or ACAS (Aged Care Assessment Service in Victoria). It replaced the old ACAT and RAS assessment workforces on 9 December 2024. This assessment determines eligibility for the Commonwealth Home Support Programme (CHSP), Support at Home, and eventually residential care. Do this early — wait times can be months.
Australian Government Department of Health and Aged Care. (2024). My Aged Care. https://www.myagedcare.gov.au
3. Contact Dementia Australia (1800 100 500)
The National Dementia Helpline is free, available 24/7, and staffed by trained dementia advisers who can answer clinical questions, connect you with local services, and provide emotional support. Ask about: free counselling, local support groups, the Dementia-Friendly Communities program, and carer education programs (including the free online MOOC from UTAS Wicking Centre).
Dementia Australia. (2024). National Dementia Helpline. https://www.dementia.org.au/get-support/national-dementia-helpline
4. Arrange legal documents URGENTLY — while capacity exists
This is time-critical. Once cognitive capacity is lost, it cannot be retrospectively granted. Arrange: (1) an Enduring Power of Attorney — this covers FINANCIAL decisions only; (2) a separate appointment for health and personal decisions, whose name varies by state and territory (for example enduring guardian, medical treatment decision maker, or attorney for health matters); (3) an Advance Care Directive recording the person's wishes for future medical care; (4) update the will. Public Trustees, solicitors and community legal services can help — see the state-by-state table on the Aged Care Navigation page.
Advance Care Planning Australia. (2024). Advance care planning: A guide for people with dementia. https://www.advancecareplanning.org.au
5. Request a Home Medicines Review (HMR)
Ask the GP to refer for a Home Medicines Review — a free, Medicare-funded service, available to people living in the community, where a clinical pharmacist visits the home and reviews all medications (including supplements and over-the-counter drugs). A GP referral is needed. People living in residential aged care have a Residential Medication Management Review (RMMR) instead. Many medications commonly prescribed for other conditions (sedatives, antihistamines, bladder medications, some blood pressure medications) worsen cognitive function and fall risk. The HMR identifies interactions and deprescribing opportunities.
Australian Government Department of Health and Aged Care. (2024). Home Medicines Review (HMR). https://www.health.gov.au/our-work/home-medicines-review
6. Request an Occupational Therapy (OT) home assessment
An OT can assess home safety and functional capacity — recommending grab rails, stove guards, door alarms, bathroom modifications, and assistive technology. They can also assess driving capacity. OT home assessments may be funded through CHSP, Support at Home, or DVA (for veterans). Ask the GP for a referral or contact Dementia Australia.
Occupational Therapy Australia. (2024). Occupational therapy and dementia. https://www.otaus.com.au
7. Address driving — do not delay
Driving must be reviewed at every stage of dementia — but a diagnosis does not automatically end driving. Under the national standards, every driver must tell their licensing authority about a condition that may affect their driving. Health professionals must report in South Australia and the Northern Territory; in every other state and territory they may report in good faith. Tell the car insurer about the diagnosis as well. An on-road driving assessment by an OT driving specialist is the most accurate test. Plan alternative transport now — community transport, Uber, volunteer driver programs. Losing the licence is one of the most distressing milestones — plan sensitively.
Austroads & National Transport Commission. (2022). Assessing fitness to drive for commercial and private vehicle drivers (AP-G56-22, 6th ed.). Austroads. https://austroads.gov.au/publications/assessing-fitness-to-drive/ap-g56
8. Apply for Centrelink carer entitlements
Family carers providing substantial daily care may be eligible for Carer Payment (income support for those providing constant care), Carer Allowance (a supplement paid on top of other income), and Carer Supplement (an annual lump sum). Current rates are indexed and change over time — see the Carer Payments Guide on Cassandra's Compass for current figures. Contact Services Australia on 132 717 or visit servicesaustralia.gov.au. The person with dementia may also be eligible for Disability Support Pension (under 65) or the Age Pension.
Services Australia. (2024). Carer Payment and Carer Allowance. Australian Government. https://www.servicesaustralia.gov.au/carer-payment
9. Explore NDIS if under 65
Younger onset dementia may qualify for the National Disability Insurance Scheme (NDIS), which funds supports such as modified equipment, transport, personal care, and community access. You must be younger than 65 on the day you make your NDIS application. Contact the NDIS on 1800 800 110 or ndis.gov.au to check the access requirements. The Commonwealth also funds Younger Onset Dementia Key Workers who specialise in navigating this system.
National Disability Insurance Agency. (2024). Applying to the NDIS. https://www.ndis.gov.au/applying-access-ndis
10. Connect with a carer support group
Social isolation is one of the strongest predictors of carer burnout. Carer Gateway (1800 422 737) provides free referrals to local face-to-face and online support groups. Dementia Australia and Carer Gateway both run peer support groups for carers — call the National Dementia Helpline on 1800 100 500 or Carer Gateway on 1800 422 737 to find one near you. Connecting with others who truly understand your experience is not a luxury — it is a clinical protective factor.
Carer Gateway. (2024). Find support in your area. Australian Government. https://www.carergateway.gov.au
11. Plan respite care — before you need it desperately
Respite means temporary care for your loved one so you can rest. Options include: in-home respite (someone comes to you), centre-based day programs (social, therapeutic activities), and residential respite (short stays in an aged care facility). My Aged Care funds several types. Plan and trial respite before a crisis forces it — last-minute arrangements are more distressing for everyone.
Australian Government Department of Health and Aged Care. (2024). Respite care. My Aged Care. https://www.myagedcare.gov.au/types-care/respite-care · Carer Gateway. (2024). Planned and emergency respite. https://www.carergateway.gov.au/help-and-support/caring-me/available-support-carers/planned-emergency-respite
12. Build a care team
Optimal dementia care is multidisciplinary. Beyond your GP and specialist, consider: speech pathologist (swallowing and communication), physiotherapist (mobility, balance, falls prevention), dietitian (weight loss, swallowing-safe nutrition), social worker (system navigation, family conflict, crisis planning), psychologist or counsellor (depression, anxiety, grief — for both the person with dementia and the carer), and a care manager or coordinator if complexity is high — for example through Support at Home care management.
Royal Australian College of General Practitioners. (2023). Silver Book — Aged care clinical guidelines. RACGP. https://www.racgp.org.au/silverbook
13. Discuss the diagnosis with family — using a communication plan
Families who have an explicit, shared understanding of the diagnosis and a plan for involvement function better and fight less. Hold a family meeting early — in person or by video. Consider involving a social worker to facilitate if there are pre-existing family tensions. Dementia Australia provides free family communication guides. Decide together: who is the primary carer, what are everyone's roles, how will decisions be made?
Dementia Australia. (2024). For family, friends and carers. https://www.dementia.org.au/living-dementia/family-friends-and-carers
14. Begin life story documentation
A life story or "This is Me" document captures who the person is — their occupation, family history, preferences, values, important memories, favourite foods, music, routines, and spiritual beliefs. This is one of the most useful tools for personalising care at every stage of dementia. Start it while the person can contribute. It will guide every future carer — in the home, at day programs, and in residential care.
Wicking Dementia Research and Education Centre. (2025). Person-centred care module. Understanding Dementia MOOC. University of Tasmania. https://www.utas.edu.au/wicking
15. Research residential care options early
This does not mean moving — it means being prepared. Waiting times vary between providers and regions, so ask each provider directly about its current waitlist. Visit facilities now while there is no urgency — it gives you time to make a genuine choice. Understand the costs: the basic daily fee, the Refundable Accommodation Deposit (RAD) or Daily Accommodation Payment (DAP), and, for people entering care from 1 November 2025, the hotelling contribution and non-clinical care contribution. Amounts are indexed each March and September. Use the My Aged Care website to compare providers.
Australian Government Department of Health and Aged Care. (2024). Residential aged care costs and fees. https://www.myagedcare.gov.au/aged-care-home-costs-and-fees
16. Create a communication folder
Compile a single, accessible folder (physical or digital) containing: written diagnosis, EPOA and ACD documents, medication list with prescribers, Medicare/DVA card, emergency contacts, GP and specialist details, My Aged Care registration number, and key carer contact numbers. Give a copy to all primary carers and family members who may need to act in an emergency.
Aged Care Quality and Safety Commission. (2025). Strengthened Aged Care Quality Standards. ACQSC. https://www.agedcarequality.gov.au/providers/quality-standards
17. Attend a dementia education program
Knowledge is the most powerful tool available. Dementia Australia offers free counselling, dementia information and education sessions, and peer support for families and carers — call the National Dementia Helpline on 1800 100 500 to find what is available near you. The Wicking Dementia Research and Education Centre (UTAS) also offers the free Understanding Dementia MOOC, used by families, students and health professionals. Understanding the brain science of dementia transforms caregiving.
Wicking Dementia Research and Education Centre. (2025). Understanding Dementia MOOC. University of Tasmania. https://www.utas.edu.au/wicking/understanding-dementia
18. Look after your own health — it is not optional
Carer health deteriorates significantly without support. Book your own GP appointment. Access free counselling through Carer Gateway, the EAP (if employed), or Dementia Australia. Exercise, sleep, and social connection are not indulgences — they are the physiological requirements for sustainable caregiving. You cannot sustain care for someone else if you are not caring for yourself.
Livingston, G., Huntley, J., Liu, K. Y., Costafreda, S. G., Selbæk, G., Alladi, S., Ames, D., Banerjee, S., Burns, A., Brayne, C., Fox, N. C., Ferri, C. P., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. B., Nakasujja, N., Rockwood, K., … Mukadam, N. (2024). Dementia prevention, intervention, and care: 2024 report of the Lancet Standing Commission. The Lancet, 404(10452), 572–628. https://doi.org/10.1016/S0140-6736(24)01296-0
What to Expect Over Time
The first weeks
Are often the hardest. Information overload, emotional shock, and urgent practical decisions all collide. Prioritise legal documents and My Aged Care registration. Everything else can wait a few weeks.
The first months
You begin building your care team, accessing services, and developing new routines. Attend an education program. Connect with peer support. Establish who in your family does what.
The first year
Routines establish. You become more expert in your loved one's specific patterns, triggers, and strengths. The focus shifts from crisis management to sustained, proactive care.
Ongoing
Dementia is a long journey — often 10+ years. Planning in stages, accessing new services as needs evolve, and maintaining carer wellbeing are lifelong priorities. You are not meant to do this alone, and help is always available.
Rights of the Person with Dementia
A dementia diagnosis does not remove a person's rights, dignity, or personhood. Under the Aged Care Act 2024 (Cth), the Statement of Rights sets out what every person receiving care can expect. The Statement of Rights replaced the former Charter of Aged Care Rights on 1 November 2025. In plain language, every person receiving care has the right to:
Sources: Aged Care Act 2024 (Cth), Part 3 — aged care rights and principles (Statement of Rights) · Aged Care Quality and Safety Commission. (2026). Statement of Rights. https://www.agedcarequality.gov.au/older-people/your-rights/statement-rights · Aged Care Quality and Safety Commission. (2025). Strengthened Aged Care Quality Standards (commenced 1 November 2025). https://www.agedcarequality.gov.au
Dementia Medications — What You Need to Know
Cholinesterase inhibitors (donepezil, rivastigmine, galantamine)
These boost acetylcholine and may temporarily improve or stabilise memory and function. On the PBS they are restricted to Alzheimer's disease (mild to moderately severe). They are also used in Lewy body dementia and Parkinson's disease dementia, but that use is specialist-guided and off-label — it is not PBS-subsidised for those conditions. Side effects: nausea, diarrhoea, vivid dreams, slowed heart rate.
Memantine
Regulates glutamate — a brain chemical involved in learning and memory. It is PBS-listed for the treatment of moderately severe Alzheimer's disease. Often used alone or in combination with donepezil. May slow functional decline.
⚠️ Critical: Lewy body dementia & antipsychotics
People with Lewy body dementia (DLB or PDD) have severe sensitivity to most antipsychotic medications. Haloperidol, olanzapine, and risperidone can cause irreversible worsening of Parkinsonism and are associated with increased mortality. Always disclose the LBD diagnosis to every prescriber. Specialists sometimes use low-dose quetiapine or clozapine, with caution. Never start, stop or change an antipsychotic without specialist advice.
FTD: Different rules apply
Cholinesterase inhibitors are generally NOT effective for FTD and may worsen behaviour. SSRIs (e.g. sertraline) may help compulsive or disinhibited behaviours. Always confirm type before accepting a medication prescription.
Source: Australian Government Department of Health and Aged Care. (2024). Home Medicines Review. https://www.health.gov.au/our-work/home-medicines-review · PBS. (2024). PBS schedules. https://www.pbs.gov.au · See Medications Reference on Cassandra's Compass for full details.
Understanding Behavioural Changes (BPSD)
Behavioural and Psychological Symptoms of Dementia (BPSD) affect up to 90% of people with dementia at some point. These include agitation, aggression, wandering, hallucinations, delusions, depression, apathy, and sleep disturbances. Understanding that behaviours are symptoms of brain disease — not deliberate choices — is foundational to compassionate, effective care.
Agitation & aggression
Often driven by pain, fear, or unmet needs — not intent
Wandering & exit-seeking
Often reflects a need for purpose, familiarity, or the toilet
Hallucinations (especially LBD)
Real to the person — reassure without arguing or confirming
Sundowning
Increased confusion in late afternoon — has circadian rhythm roots
Apathy
Not laziness — the frontal lobe is affected; gentle prompting helps
Repetitive behaviours
Reflect anxiety or reduced short-term memory — respond calmly each time
Source: Wicking Dementia Research and Education Centre. (2025). Understanding Dementia MOOC — BPSD module. UTAS. · Kales, H. C., Lyketsos, C. G., Miller, E. M., & Ballard, C. (2019). Management of behavioral and psychological symptoms in people with Alzheimer's disease: An international Delphi consensus. International Psychogeriatrics, 31(1), 83–90. https://doi.org/10.1017/S1041610218000534 · See BPSD Tracker on Cassandra's Compass.
Culturally Diverse & Aboriginal and Torres Strait Islander Communities
Dementia does not affect all communities equally. People from culturally and linguistically diverse (CALD) backgrounds, and Aboriginal and Torres Strait Islander peoples, face unique barriers to diagnosis, culturally appropriate care, and service access. In Aboriginal communities, dementia occurs at younger ages and at higher rates than in the general population — linked to higher rates of cardiovascular disease, diabetes, and social determinants of health.
Source: Alzheimer's Disease International. (2023). World Alzheimer Report 2023. ADI. · Australian Institute of Health and Welfare. (2024). Dementia in Australia. AIHW. https://www.aihw.gov.au/reports/dementia/dementia-in-aus/contents/summary · See Cultural Care & Diversity on Cassandra's Compass.
Carer Wellbeing — This Is Not a Luxury
Dementia caregiving is associated with significantly elevated rates of depression, anxiety, physical illness, and social isolation in carers. The 2024 Lancet Commission on Dementia identifies carer support as a core component of optimal dementia care — not an afterthought. Carer burnout is a leading driver of premature facility placement (Brodaty & Donkin, 2009).
Seek counselling early
Free through Carer Gateway, Dementia Australia, and many GP mental health plans (10 sessions/year)
Use respite regularly
Trial it now, not in crisis. Both you and your loved one adapt better with early, regular experience
Maintain your own health
Book your own GP appointments. Stay connected with your social networks. Exercise when you can
Name the grief
Anticipatory grief is real. You are allowed to feel it. Naming it helps. A psychologist or support group can help
Set limits on information
Researching every possible outcome can be overwhelming and counterproductive. Focus on the present stage
Accept imperfection
You will have bad days. You will say the wrong thing. You will feel resentful sometimes. This is normal. Guilt adds suffering without improving care
Source: Livingston, G., Huntley, J., Liu, K. Y., Costafreda, S. G., Selbæk, G., Alladi, S., Ames, D., Banerjee, S., Burns, A., Brayne, C., Fox, N. C., Ferri, C. P., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. B., Nakasujja, N., Rockwood, K., … Mukadam, N. (2024). Dementia prevention, intervention, and care: 2024 report of the Lancet Standing Commission. The Lancet, 404(10452), 572–628. https://doi.org/10.1016/S0140-6736(24)01296-0 · See My Journal & Mental Health in Aged Care on Cassandra's Compass.
📞 Key Australian Contacts
Dementia Support Australia (DBMAS)
1800 699 799Free 24/7 advice for carers and staff when behaviours change
Dementia Australia National Helpline
1800 100 50024/7 — free counselling, information, education sessions & the free At Home with Dementia service
Key Questions to Ask Your Healthcare Team
These are the questions that matter most. Print this list and bring it to your next appointment.
📍 Explore More on Cassandra's Compass
Every page below is cross-referenced to this guide — click to explore the topic in depth.
Trusted External Resources
References (APA 7th Edition)
🎓 UTAS Wicking Dementia Research & Education Centre — listed first
Wicking Dementia Research and Education Centre. (2025). Understanding Dementia MOOC. University of Tasmania. https://www.utas.edu.au/wicking/understanding-dementia
Advance Care Planning Australia. (2024). Advance care planning: A guide for people with dementia. ACPA. https://www.advancecareplanning.org.au
Aged Care Act 2024 (Cth). Australian Government. https://www.health.gov.au/our-work/aged-care-act
Aged Care Quality and Safety Commission. (2025). Strengthened Aged Care Quality Standards. ACQSC. https://www.agedcarequality.gov.au/providers/quality-standards
Alzheimer's Association. (2024). 2024 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 20(5), 3708–3821. https://doi.org/10.1002/alz.13809
Alzheimer's Disease International. (2023). World Alzheimer Report 2023: Reducing dementia risk. ADI. https://www.alzint.org/resource/world-alzheimer-report-2023/
Australian Commission on Safety and Quality in Health Care. (2024). Psychotropic medicines in cognitive disability or impairment clinical care standard. ACSQHC. https://www.safetyandquality.gov.au/clinical-care-standards/psychotropic-medicines-cognitive-disability-or-impairment
Australian Government Department of Health and Aged Care. (2024). My Aged Care. https://www.myagedcare.gov.au
Australian Institute of Health and Welfare. (2024). Dementia in Australia. AIHW. https://www.aihw.gov.au/reports/dementia/dementia-in-aus/contents/summary
Austroads & National Transport Commission. (2022). Assessing fitness to drive for commercial and private vehicle drivers (AP-G56-22, 6th ed.). Austroads. https://austroads.gov.au/publications/assessing-fitness-to-drive/ap-g56
Carer Gateway. (2024). Find support in your area. Australian Government. https://www.carergateway.gov.au
Statement of Rights, Aged Care Act 2024 (Cth), Part 3. Australian Government. https://www.agedcarequality.gov.au/older-people/your-rights/statement-rights (The Statement of Rights replaced the former Charter of Aged Care Rights on 1 November 2025.)
Dementia Australia. (2024). About dementia. https://www.dementia.org.au/about-dementia
Dementia Support Australia. (2024). A guide for family carers: Dealing with behaviours in people with dementia. HammondCare. https://www.dementia.com.au/resource-hub/a-guide-for-family-carers-dealing-with-behaviours-in-people-with-dementia
Livingston, G., Huntley, J., Liu, K. Y., Costafreda, S. G., Selbæk, G., Alladi, S., Ames, D., Banerjee, S., Burns, A., Brayne, C., Fox, N. C., Ferri, C. P., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. B., Nakasujja, N., Rockwood, K., … Mukadam, N. (2024). Dementia prevention, intervention, and care: 2024 report of the Lancet Standing Commission. The Lancet, 404(10452), 572–628. https://doi.org/10.1016/S0140-6736(24)01296-0
National Disability Insurance Agency. (2024). Applying to the NDIS. https://www.ndis.gov.au/applying-access-ndis
Australian Government Department of Health and Aged Care. (2024). Home Medicines Review (HMR). https://www.health.gov.au/our-work/home-medicines-review
Royal Australian College of General Practitioners. (2023). Silver Book — Aged care clinical guidelines. RACGP. https://www.racgp.org.au/silverbook
Royal Commission into Aged Care Quality and Safety. (2021). Final report: Care, dignity and respect. Commonwealth of Australia. https://www.royalcommission.gov.au/aged-care/final-report
Services Australia. (2024). Carer Payment and Carer Allowance. Australian Government. https://www.servicesaustralia.gov.au/carer-payment
Taylor, J. P., McKeith, I. G., Burn, D. J., Boeve, B. F., Weintraub, D., Bamford, C., Allan, L. M., Thomas, A. J., & O'Brien, J. T. (2020). New evidence on the management of Lewy body dementia. The Lancet Neurology, 19(2), 157–169. https://doi.org/10.1016/S1474-4422(19)30153-X
World Health Organization. (2021). Global status report on the public health response to dementia. WHO. https://www.who.int/publications/i/item/9789240033245
Verified against official sources on 8 October 2026
This guide is for educational purposes only and does not replace professional medical, legal, or financial advice.
Content is informed by Dementia Australia, the Department of Health, Disability and Ageing, the Aged Care Quality and Safety Commission, and current peer-reviewed literature.
© Cassandra's Compass 2026. All citations conform to APA 7th Edition.
The person is always more than their diagnosis.
— Dr. Tom Kitwood, Dementia Care researcher
Verified against official sources on 8 October 2026