What to Do After a Dementia Diagnosis:
A Step-by-Step Guide for Families

The first thing to understand

A dementia diagnosis is not a single event — it is the beginning of a long process that you have time to prepare for. The diagnosis means a window is open: your family member still has legal capacity, still has opinions and wishes, and can still participate in decisions about their own care and future. That window will close gradually. How well you use it in the coming months determines almost everything that follows.

The families I've watched navigate dementia well share one thing: they used the diagnosis as a starting gun, not a full stop. They made the legal arrangements, got the assessments started, and had the conversations before the crisis forced them to act without preparation.

The families who struggled did the opposite — they grieved (entirely understandably), avoided the difficult conversations, and woke up a year later needing to make urgent decisions from a much weaker position.

This guide helps you be the first family.

The one thing that cannot wait

Before anything else — before the care planning, before the phone calls to government agencies, before you've had time to process the diagnosis — you need to sort out legal documents.

Power of Attorney (called different things in different countries — see below) allows you to manage financial and legal affairs on behalf of your family member. An Advance Care Directive records their wishes about future medical treatment. Both must be completed while the person has legal capacity to consent to them.

Do not wait until you "need" it. You will not know you need it until it is already too late to get it the easy way.

The exact documents and costs vary by country. Find your country below for specifics.

What to do in the first month

After the legal documents, the first month is about getting the right people informed and the right processes started. None of these are urgent in the way legal capacity is urgent — but all of them have waiting times, and the clock only starts when you make the call.

1. Get a specialist appointment confirmed. A geriatrician, neurologist, or memory clinic review should follow the initial diagnosis. If your GP made the diagnosis, ask for a specialist referral. The specialist can confirm the type of dementia, discuss medications (cholinesterase inhibitors like donepezil may slow progression in Alzheimer's — but starting them is a clinical decision for the specialist), and stage the condition using a tool like the CDR (Clinical Dementia Rating).
2. Contact the relevant care system in your country. In Australia, this means My Aged Care. In the UK, your Local Authority. In the US, your Area Agency on Aging. In Ireland, the GP referral to HSE. These processes take time — often months. Starting early means you're in the queue, not scrambling when things get harder. See your country's section below.
3. Notify the GP of the diagnosis if they weren't the one who made it. The GP needs to know so they can co-ordinate care, manage medications, and make the appropriate referrals. They also need to know for driving assessment purposes.
4. Do a home safety review. Falls are a major risk in dementia. An occupational therapist (OT) can assess the home and recommend modifications — grab rails, better lighting, stove guards, door alarms. In most countries, OT assessments can be accessed through the care system at low or no cost.
5. Contact the national dementia helpline in your country. These organisations provide free advice, local service directories, and often specialist dementia advisors. They are significantly underused. See your country's helpline below.

Your country — specific next steps

What follows is specific to your country's system. Select below.

The driving conversation

Dementia will eventually affect driving ability — and in most countries, there is a legal obligation to notify the licensing authority when a person has been diagnosed. This conversation is one of the hardest families face, and one of the most avoided. Avoiding it has consequences.

In Australia, the treating doctor is required to report to the relevant state licensing authority when a medical condition may impair driving. In the UK, the person with dementia is legally required to notify the DVLA (or DVA in Northern Ireland). In the US, requirements vary by state. In Ireland, the GP should be notified and may refer for a driving assessment.

In early-stage dementia, a formal driving assessment by an occupational therapist (available in most countries) can provide an objective evaluation. Some people with early dementia continue to drive safely for a period — but regular reassessment is required.

Talking to family

A dementia diagnosis affects the whole family — including family members who are geographically distant, estranged, or in denial. Some conversations will be hard. Some family members will refuse to accept the diagnosis. Some will disappear. Some will want to help but not know how.

A few things that help:

• Have a single family meeting early — ideally before roles are assumed by default rather than agreed. Who is the primary carer? Who manages finances? Who lives closest? Who handles medical appointments?
• Write things down. What was agreed, who is responsible for what, what the person with dementia has said about their own preferences. Memory and disputes about what was said become more common as time passes and stress increases.
• Include the person with dementia in decisions for as long as possible. Their capacity diminishes gradually — it does not disappear immediately at diagnosis. Their preferences about care, living arrangements, and end of life are both legally and morally important.
• Acknowledge that the person who gets the most criticism is usually the primary carer. This is almost universal in dementia families. The person who does the most gets judged most harshly by those who do less. Name this dynamic before it destroys relationships.

Looking after yourself

This guide has focused almost entirely on the person with dementia. But a diagnosis changes your life too — and the research is unambiguous: carer health and wellbeing directly affect the quality and sustainability of care. This is not secondary. It is foundational.

The average dementia carer provides care for 4–5 years before residential care becomes necessary. Some carers provide home care for much longer. Burning out at year two means worse care for your family member and serious consequences for your own health.

Signs of carer burnout often look like depression, physical illness, social withdrawal, and increasing irritability — and they are frequently missed or dismissed by the carer themselves. The Carer Burnout Self-Check on CarerCompass takes three minutes and is private.

Tools on CarerCompass that help right now

The Jargon Buster explains dementia-specific terms — BPSD, CDR, MCI, sundowning — in plain English, so that conversations with specialists become clearer.

About this guide: Written by a practising GP with experience in aged care across multiple countries. Updated 2025. This guide provides general information about dementia care systems and is not a substitute for medical, legal, or financial advice specific to your situation. Payment amounts and eligibility criteria are subject to change — verify current details with the relevant authority in your country.