A dementia diagnosis changes everything — and nothing, immediately. This guide tells you what genuinely cannot wait, what can, and how to navigate the weeks ahead.
The most important thing in the first week is not to panic about services. The most important thing is the legal documents — Power of Attorney must be done while your family member still has capacity. This window closes. Everything else can wait; this cannot.
What to do and when — in rough order of urgency.
An EPA gives a trusted person legal authority to make financial and personal/health decisions when your family member can no longer do so. In most Australian states there are two separate documents — one for financial decisions, one for personal and health decisions.
This must be done while your family member still has legal capacity — meaning they can understand what they're signing. With a dementia diagnosis, that window can close faster than families expect.
If your family member loses capacity before this is in place, you will need to apply to the relevant state tribunal (VCAT, NCAT, QCAT etc.) for guardianship and administration orders — a slow, expensive, and distressing process.
Call 1800 200 422 or visit myagedcare.gov.au. Registration is free and takes 15–20 minutes by phone. You'll need the person's Medicare number.
Do this now even if they don't need services yet. The waiting clock for Home Care Packages doesn't start until registration. Waiting lists for higher-level packages can be 6–18 months.
1800 100 500 (free, 8am–8pm Mon–Fri, 9am–5pm Sat). They have specialist dementia advisors who can explain the diagnosis, what to expect, and what local services are available. This call often changes how families feel about the road ahead.
They can also connect you with local Dementia Support Australia services including in-home support for people with behavioural and psychological symptoms.
The Aged Care Assessment Team assesses eligibility for Home Care Packages. Request one through My Aged Care after registration. An assessor comes to the home — describe the difficult days honestly, not just the good ones.
A dementia diagnosis usually qualifies for at least a Level 2 package and often Level 3 or 4 depending on functional impact. Get the assessment done now, even if you don't plan to use services immediately.
An Advance Care Plan records your family member's wishes for future medical treatment — what kind of care they want, what they don't want, and who should make decisions. It's separate from the EPA and complements it.
The GP can facilitate this conversation. Free templates are available at advancecareplanning.org.au. Store copies with the GP, at home, and with whoever holds the EPA.
If you are providing substantial care, you may be entitled to:
Apply at servicesaustralia.gov.au or call 132 717. These are underused — many carers qualify and never claim.
Ask the GP for a referral to an Occupational Therapist (OT) for a home safety assessment. OTs can identify fall risks, recommend modifications (grab rails, improved lighting, door alarms), and advise on kitchen safety — especially important in the early stages.
Home modifications up to $500 may be funded through My Aged Care.
A dementia diagnosis does not automatically mean stopping driving — but it does mean the GP must notify the relevant state authority (AUSTROADS guidelines apply). A driving assessment may be required. This is often a difficult family conversation.
The GP should initiate this conversation. If they haven't, ask directly at the next appointment.
Driving with unmanaged dementia is a safety issue — for your family member and for others. If the GP is not addressing it, you can raise it directly or contact the relevant state transport authority.
Two things that genuinely cannot wait: Lasting Power of Attorney (must be done while capacity exists) and — if your family member has complex health needs — finding out whether they qualify for NHS Continuing Healthcare, which is fully funded with no means test.
What to do and when.
Two separate LPAs: Property & Financial Affairs and Health & Welfare. Both must be registered with the Office of the Public Guardian (OPG) before use. Registration takes several weeks — start now.
Without an LPA, if your family member loses capacity you must apply to the Court of Protection — typically costing £3,000–8,000 and taking 6–12 months. This is entirely avoidable.
0333 150 3456 (9am–8pm Mon–Wed, 9am–5pm Thu–Fri, 10am–4pm Sat–Sun). Specialist dementia advisors who can explain the diagnosis, what to expect, and local services. Dementia Connect support line — they can help with everything in this guide.
Contact your local council's adult social care department and request a Needs Assessment — this is a legal right under the Care Act 2014, free regardless of income. It assesses what care and support your family member needs.
At the same appointment or separately, request a Carer's Assessment for yourself — also a legal right. This assesses your needs as a carer and may lead to support including respite, counselling, or direct payments.
If your family member has complex health needs — not just social care needs — they may qualify for CHC, which means the NHS funds all their care with no means test. Nursing home, home care, everything.
Most families never know to ask. Dementia with significant behavioural symptoms (aggression, wandering, severe anxiety) often qualifies. Ask the GP: "Has a CHC checklist been completed?"
If you provide 35+ hours of care per week, you may be entitled to Carer's Allowance (£81.90/week). Earnings limit applies (£151/week net after deductions). It also provides National Insurance credits toward state pension. Apply at gov.uk/carers-allowance.
Specialist dementia nurses who support family carers — not the person with dementia, but you. Free service. 0800 888 6678 (9am–9pm Mon–Fri, 9am–5pm Sat–Sun). They provide expert guidance, emotional support, and practical advice on managing behaviour, communication, and planning.
Admiral Nurses are one of the most underused resources in UK dementia care. Many carers say they wished they'd called earlier.
Your family member must inform the DVLA of their dementia diagnosis — this is a legal obligation. The GP should advise on this. A driving assessment may be required. Insurance must also be notified.
Durable Power of Attorney (financial) and Healthcare Proxy / Healthcare Power of Attorney (medical decisions) — these must be signed while your family member has capacity. And understand now that Medicare does not cover long-term dementia care — Medicaid does, for those who qualify.
What to do and when.
Two separate documents are essential:
An elder law attorney can prepare all three — typically $500–1,500. These documents vary by state. Do not delay.
1-800-272-3900 (24/7). Specialists who understand every stage of dementia and every aspect of caregiving. They can provide a care consultation, connect you to local services, and explain your options in detail. This is your most important first call.
Every region has one. Find yours at eldercare.acl.gov or call 1-800-677-1116. Free service. They coordinate local care services, advise on Medicaid eligibility, and can connect you with adult day programs, home care, and caregiver support.
Medicare covers doctor visits, hospital stays, and short-term skilled nursing — but does NOT cover ongoing personal care or long-term memory care facility costs.
Medicaid covers long-term care for those who qualify (income and asset limits). Medicaid planning — understanding the rules before spending down assets — is important. An elder law attorney can help with this.
Medicaid asset rules vary by state and are complex. Do not transfer assets without understanding the Medicaid look-back period (typically 5 years). Get legal advice before making financial decisions.
If your family member is a veteran, the VA Aid and Attendance benefit provides substantial monthly payments to help fund home care or assisted living. This is significantly underused. Contact the VA (1-800-827-1000) or a Veterans Service Organization (VSO) for help applying — VSO assistance is free.
If you are employed and providing care, the Family and Medical Leave Act (FMLA) entitles eligible employees to 12 weeks of unpaid, job-protected leave per year. Notify HR early. Some states have paid family leave that supplements this.
State DMV requirements for reporting dementia vary. The doctor may be required to report or advise. A driving evaluation by a specialist is recommended. Contact your state DMV or the Alzheimer's Association for your state's specific rules.
Power of Attorney (provincially regulated) must be done while capacity exists. And apply for the Disability Tax Credit (DTC) now — it can be claimed retroactively, but you need it in place to access the RDSP and other benefits.
What to do and when.
Provincial legislation varies, but most provinces require two documents:
Contact a lawyer. Many provincial law societies offer referral services. Costs vary by province — typically $400–900 for both documents.
1-800-616-8816 or alzheimer.ca for your provincial society. Dementia advisors, education programs, local support groups, and respite information. First call after the diagnosis.
A dementia diagnosis often qualifies — the cognitive impairment affecting mental functions necessary for daily life is the relevant category. Download the T2201 from canada.ca and have the GP or specialist complete Part B.
Can be claimed retroactively for up to 10 years. Also unlocks the Registered Disability Savings Plan (RDSP) — the government may contribute up to $90,000 over the person's lifetime.
Home care is provincially managed. Contact your provincial health authority to request a home care assessment. Wait times vary significantly by province.
If you need to reduce or stop working to care, the EI Compassionate Care Benefit provides up to 26 weeks of income support. Requires a medical certificate confirming a serious condition with significant risk of death within 26 weeks — a dementia diagnosis may qualify in advanced stages.
A dementia diagnosis must be reported to the provincial licensing authority — requirements vary by province. The GP typically initiates this. A driving evaluation may be required. The Alzheimer Society can advise on your province's rules.
Enduring Power of Attorney must be set up while your family member has capacity — this is the most time-sensitive step. And get a NASC referral underway — this is the gateway to all funded support in New Zealand.
What to do and when.
Two separate EPAs: one for property (financial decisions) and one for personal care and welfare (health decisions). Both must be signed before a solicitor or authorised certifier while capacity exists.
Ask the GP to refer to NASC (Needs Assessment Service Coordination) — the gateway to all government-funded support including home support hours and Carer Support subsidy. A NASC coordinator will visit and assess needs.
Be honest about difficult days. Carer strain is part of the assessment.
Free templates at advancecareplanning.org.nz. Not legally binding but carries weight with medical teams. The GP can facilitate the conversation. Store with the GP, at home, and with whoever holds the EPA.
The GP must report the diagnosis to the NZ Transport Agency (NZTA). A medical assessment of fitness to drive will be required. This is often a difficult conversation — Alzheimer's NZ can provide guidance on how to approach it.
Enduring Power of Attorney is the single most urgent step — it must be registered with the Decision Support Service while capacity exists. And contact Family Carers Ireland and the Alzheimer Society of Ireland early — they are excellent and underused.
What to do and when.
Since 2023, Irish EPAs must be signed before a solicitor and registered with the Decision Support Service (DSS). Two separate EPAs: one for property and finances, one for personal welfare.
Contact: decisionsupportservice.ie or 01 211 9750
1800 341 341 (10am–5pm Mon–Fri). Specialist dementia advisors, local support groups, home visiting services, and respite programmes. They are also advocates who can help you navigate the HSE system.
Ask the GP to refer to the public health nurse. The public health nurse can arrange home support hours, connect you to day care services, and refer to the HSE home support team. This is the practical starting point for in-home support.
HSE Infoline: 1800 700 700
Apply at mywelfare.ie or your local Intreo office.
Legally recognised in Ireland since 2023. Records your family member's wishes about future treatment. Free templates at decisionsupportservice.ie. Can also name a Designated Healthcare Representative.
If nursing home care becomes necessary, Fair Deal is the government funding scheme. Applications take 3–6 months. Understand the three-year cap on the family home now, before any decisions are made.
Raise Fair Deal with the GP now — not as an imminent plan, but to understand it. Many families are blindsided by the financial implications when a crisis forces a rapid decision.
Driving with dementia must be assessed. The GP should advise on notification to the Road Safety Authority (RSA) and arrange a medical fitness-to-drive assessment. The Alzheimer Society of Ireland can advise on how to approach this conversation.
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Medications, allergies, contacts — printable for ambulance, hospital, or respite carers.
Prepare a prioritised list of questions before every specialist or GP appointment.
Log medications, dosages, and upcoming appointments in one place.
A 3-minute private check-in. Dementia caring is one of the most demanding roles there is.
Keep family members and relief carers on the same page.
Not sure where to start? The AI Carer Navigator can take your specific situation and give you a personalised pathway — what to do, in what order, for your country.
Medical disclaimer: This guide provides general information about care systems and pathways following a dementia diagnosis. It does not constitute medical, legal, or financial advice. Every situation is different — consult your GP, a solicitor, and the relevant government agencies for advice specific to your circumstances. Helpline numbers and benefit amounts are subject to change — verify current details directly. CarerCompass — carercompass.org