The stages of dementia, and how to plan care through each one

The three stages of dementia

Dementia is a group of brain conditions that gradually affect memory, thinking, behaviour and the ability to do everyday tasks. It is progressive, which means the symptoms get worse over time. Alzheimer's disease is the most common cause. There is no cure, but treatment and support can help with symptoms.

Health services usually describe three broad stages. They are a rough map for planning, not a countdown: everyone's path is different, some people move through the stages faster than others, and there are good days and bad days.

Even late in the illness, a person can still hear, feel touch and respond to emotion, so talking to them and holding their hand still matter.

Before anyone assumes dementia, ask the GP to rule out other causes of confusion. Depression, delirium, thyroid problems, low vitamin B12 and medicine side effects can all cause dementia-like symptoms, and many of them can be treated. A sudden change in behaviour in someone who already has dementia also needs a medical check, because pain or another health problem can be the cause.

Source: healthdirect: dementia, an overview

Early stage: get the assessment done

The early stage is the time to plan, because the person can still take part in decisions about their own future. Three practical steps come first.

1. Apply for an aged care needs assessment. Every kind of government-funded aged care, from a few hours of help at home to residential respite or a permanent room, needs one. Apply through My Aged Care online or on 1800 200 422. People aged 65 or older can apply, or 50 or older for Aboriginal and Torres Strait Islander people and people who are homeless or at risk of homelessness. People under 65 with younger onset dementia may get support through the National Disability Insurance Scheme (NDIS) instead.
2. Sort out the legal papers (see the last section of this guide). This cannot wait until later.
3. Talk about driving. A diagnosis does not always mean someone must stop driving straight away, but they need to tell their licensing authority and insurer and talk to their doctor about what is safe. Everyone with dementia has to stop driving at some point.

The aged care needs assessment replaced the old ACAT assessment, and many hospitals and GPs still call it that. Read the aged care assessment, explained for how it works.

Source: My Aged Care: caring for someone living with dementia

Care at home: what is funded

Most people want to stay at home for as long as it is safe, and with the right help many do so well into the middle stage. There are two government-funded programs, both reached through the same assessment.

Commonwealth Home Support Program (CHSP)

Entry-level help to keep living safely at home: meals, personal care, nursing, cleaning, transport, social support and respite. You are expected to contribute if you can afford to, and each provider sets its own prices. The program has been extended to 30 June 2029 and will stay separate from Support at Home (announced August 2026).

Support at Home

For more complex or intensive needs. A person is given one of 8 classifications, each with a set yearly budget: $11,031.56 at classification 1, rising to $80,294.00 at classification 8 (current as of 1 October 2026). It can pay for:

• clinical supports such as nursing, occupational therapy and help with showering or dressing
• independence supports such as transport, respite care and help getting to appointments and social activities
• everyday living such as cleaning, gardening, shopping and meals.

What you pay depends on the kind of service and on income and assets, which Services Australia assesses (contribution rates as at 1 October 2026):

• Clinical supports: Nil for everyone. From 1 October 2026 this includes personal care.
• Independence supports: Full pensioners 5%; part pensioners and Commonwealth Seniors Health Card holders 5% to 50%; self-funded retirees 50%.
• Everyday living: Full pensioners 17.5%; part pensioners and card holders 17.5% to 80%; self-funded retirees 80%.

The Assistive Technology and Home Modifications scheme can fund equipment and changes that make the home safer. Simple changes help too: good lighting and night lights, removing loose rugs and clutter, labels on cupboards, a regular daily routine, and appliances that switch themselves off.

In the last months of life, the Support at Home End-of-Life Pathway adds up to $25,736.57 of care at home over 12 weeks (current as of 1 October 2026) for people expected to have 3 months or less to live.

For the full detail, see Support at Home levels and budgets and the Commonwealth Home Support Program.

Source: My Aged Care: Support at Home program

Changed behaviours: what helps, and who to call

Agitation, aggression, suspicion, restlessness, repeating questions, following the carer from room to room and being awake at night are common, especially in the middle stage. They are not deliberate. They are often a sign of an unmet need: pain, hunger or thirst, constipation, tiredness, boredom or loneliness, fear or confusion, missing glasses or hearing aids, or a change in routine.

What usually helps:

• stay calm and speak slowly, in short sentences, one instruction at a time
• do not argue or correct; reassure, or gently change the subject or activity
• keep the same daily routine and familiar surroundings
• offer things the person used to enjoy: music, old photos, simple cooking, a walk or a drive
• for restlessness late in the day ("sundowning"), plan calm afternoons, keep lighting low but visible at night and limit long daytime naps
• keep a note of when the behaviour happens and what came before it, to share with the doctor.

Dementia Support Australia

When behaviours are affecting care, call Dementia Support Australia on 1800 699 799, 24 hours a day. It is funded by the Australian Government and there is no charge. Families, carers, GPs and aged care staff can all make a referral, wherever the person lives. It runs:

• the Dementia Behaviour Management Advisory Service (DBMAS), which assesses the person and their surroundings by phone or in person, works out what is driving the behaviour and gives tailored, non-medication strategies, then helps put them in place. It works at home, in aged care homes and in hospital.
• Severe Behaviour Response Teams (SBRT), a mobile service that aged care homes can call on for severe symptoms. A team can come on site within 48 hours.

For a question at any hour, or to talk things through, the National Dementia Helpline run by Dementia Australia gives information, advice and support on 1800 100 500, 24 hours a day, every day of the year. For an interpreter, call 131 450 first.

Source: Department of Health, Disability and Ageing: Dementia Behaviour Management Advisory Service

Respite: a break for the carer, and a trial run

Caring for someone with dementia is exhausting, and a carer who burns out cannot keep going. Respite gives the carer a break while someone else provides care. It comes in several forms:

• at home (flexible respite): a paid carer comes in for a few hours, a day or overnight, through the Commonwealth Home Support Program or Support at Home
• day centres: community and centre-based respite, often 10am to 3pm, sometimes with transport
• cottage respite: overnight or a weekend in a community setting, usually 2 to 3 days at a time (Commonwealth Home Support Program)
• residential respite: a short stay in an aged care home.

Residential respite is subsidised for up to 63 days a financial year, planned and emergency stays combined, and can be extended by 21 days at a time with the assessor's approval. The only fee is the basic daily fee, at most $68.93 a day (as at 20 September 2026): there is no means test and no room payment. A home can ask for a booking fee: The lower of one week of fees or 25% of the fee for the whole stay, deducted from fees on entry, refundable if cancelled more than 7 days before.

Approval for respite is not a promise of a bed. Search My Aged Care's Find a provider for aged care homes that offer respite, then phone them to check dates. In April to June 2026 the national median wait from application to residential respite was 100 days, so book planned respite well ahead.

In an emergency

If the carer suddenly cannot care (an illness, a hospital stay, a crisis at home), call Carer Gateway on 1800 422 737 for emergency respite. In an emergency a person may be able to go into residential respite before they have had an assessment, and the aged care home can arrange an urgent one.

Respite as a step towards permanent care

Many families use a respite stay to see how the person settles in an aged care home, and to give the carer a proper rest before a big decision. Some families move straight from a respite stay into permanent care in the same home when a place is offered. Carer Gateway also offers counselling, peer support groups and coaching for carers.

Source: My Aged Care: respite care

When home is no longer enough

There is no single right moment, and no right or wrong decision. Dementia Australia's helpline advisers describe the usual turning point plainly: it becomes unsafe for the person to be at home, the carer is exhausted, and the person needs care around the clock.

Signs worth taking seriously:

• wandering or trying to leave the house, and getting lost
• falls, or not eating or drinking enough
• refusing medicines, or not managing them safely
• being up and confused at night, so no one in the house sleeps
• aggression that leaves the carer or others feeling unsafe
• a carer whose own health is failing.

Moving someone into an aged care home does not end the caring role. It changes it: from supervisor, cleaner and night nurse back to son, daughter or partner. Dementia Australia suggests thinking of it as giving the person the chance of 24-hour care from people trained to give it. Guilt is normal, and it is not evidence of a wrong decision.

Plan before the crisis. In April to June 2026 the national median wait from applying through My Aged Care to entering permanent residential care was 138 days, and a move often has to happen quickly once a place is offered. Getting the assessment done, starting the means assessment with Services Australia and touring homes early takes the pressure off. For costs, see what aged care costs. Fees are worked out from income and assets: for help with the rules, Services Australia's Financial Information Service is on 132 300.

If the person still has capacity, the decision to move is theirs to make. If they do not, it falls to their attorney or guardian for personal matters, which is one more reason to make the legal documents early.

Source: healthdirect: how to care for someone with dementia at home

Choosing an aged care home for someone with dementia

Support for people with dementia is part of the everyday care every aged care home provides, and many homes also offer specialised dementia care. Some have a secure unit (also called a memory support or dementia-specific unit), designed specifically for people with dementia. Not everyone with dementia needs one: Dementia Australia says these units usually suit people with special care needs.

What to ask each home

• Do staff have training in dementia care? Who leads it?
• How do you get to know a new resident: their history, routines, likes and what upsets them?
• How do you manage pain in people who cannot say they are in pain?
• How do you respond to distress or aggression? Do you use Dementia Support Australia?
• When do you use sedating medicines or physical restraint, and how do you involve the family?
• Who decides whether someone moves into the secure unit, and can they move out again?
• How do you involve families in care planning, and can we help with meals, showering or outings?
• Can you still care for my parent as their needs increase, including at the end of life?

What to look for on a tour

Dementia Australia suggests checking that the home feels welcoming and residents look well cared for, that it is obvious how to find the toilet, that there are clear signs and contrasting colours, that there is a safe outdoor area residents actually use, and that there are quiet spaces. Take a list and notes, and trust your instincts.

Restraint and restrictive practices

Restrictive practices are anything that restricts a resident's rights or freedom of movement. There are five types: chemical (medicine used mainly to influence behaviour), environmental, mechanical, physical and seclusion. They can only be used as a last resort to prevent harm, in the least restrictive form and for the shortest time, after a health practitioner has assessed the person and alternatives, and with informed consent from the resident or their restrictive practices substitute decision-maker. Restrictive practices are also one of the five Quality Measures in a home's Star Rating.

Read more in restrictive practices in aged care, and take the aged care tour checklist with you. A home's care minutes and staffing figures are also worth checking.

Source: Dementia Australia: residential care

The Specialist Dementia Care Program

A small number of people with dementia have behaviours so severe that a mainstream aged care home cannot care for them safely, even with outside help. The Department of Health, Disability and Ageing estimates this is up to 1% of people living with dementia. The Specialist Dementia Care Program (SDCP) is for them.

A person is eligible if they have dementia; have very severe behavioural or psychological symptoms, such as aggression, severe agitation, constant calling out or screaming, or severe depression or anxiety; have had those symptoms for at least 3 months; other specialist services have not been able to reduce them; and they have had an aged care needs assessment.

SDCP units are small, cottage-like and designed for dementia, with specially trained staff and specialist support. The aim is to reduce or stabilise symptoms, without restraint, within about 12 months on average, and then help the person move to a less intensive setting such as a mainstream aged care home.

Dementia Support Australia assesses eligibility, and anyone can make a referral through it (1800 699 799). There are not many units: the Department aims for 55 nationally, and its list showed five operating in Victoria at the end of September 2026, with another expected in early 2027.

Source: Department of Health, Disability and Ageing: Specialist Dementia Care Program

Legal planning: do it early

Legal and financial decisions get harder as dementia progresses. Documents that appoint someone to decide for you can only be made while you have the capacity to make them, so the early stage is the window.

• An enduring power of attorney appoints someone to make financial decisions, personal and lifestyle decisions (such as where to live), or both. In Victoria one document can cover both kinds of decision. Other states name and split these roles differently.
• A medical treatment decision maker (in Victoria) makes health decisions. An attorney cannot make medical treatment decisions unless they are also appointed as the medical treatment decision maker.
• An advance care directive records the person's values and wishes about future medical treatment, so their doctors and family know what they would want.
• A current will.

Capacity is decision specific. A person may be able to make some decisions but not others, and a diagnosis of dementia does not by itself mean they cannot sign a document. In Victoria, a person has decision-making capacity if they can understand, retain and weigh the relevant information and communicate their decision in some way. The Office of the Public Advocate recommends getting legal advice when making an enduring power of attorney.

If no one is appointed and the person can no longer decide, in Victoria the Victorian Civil and Administrative Tribunal (VCAT) can appoint someone, such as the Public Advocate or a trustee company. That is slower and takes the choice out of the family's hands.

Step-by-step guides: enduring power of attorney, state by state, advance care directives and power of attorney and guardianship.

Source: Office of the Public Advocate (Victoria): making an enduring power of attorney