Dementia diagnosis: what to do first (UK)

After a dementia diagnosis, the most important first step is setting up Lasting Power of Attorney, because it can only be made while your parent has mental capacity — and a diagnosis does not take that capacity away. After that, in order: claim the benefits the diagnosis unlocks, apply for the council tax discount most families miss, tell the DVLA and the car insurer if your parent drives, put money protections in place, and plan care before it becomes urgent.

A dementia diagnosis lands heavily, and it is right to take time to absorb it as a family. When you are ready, there is a practical side — a set of admin jobs the diagnosis triggers — and getting them done in the right order protects your parent’s choices, their money and their independence. This guide is that order.

This guide is general information, not financial or legal advice. For advice about your own situation, speak to a regulated professional, or a free service such as Citizens Advice or Age UK.

What needs doing first after a dementia diagnosis?

Here is the admin roadmap, in priority order. Each step is covered in more detail below, with links to full guides.

1. Lasting Power of Attorney (LPA) — both types, while capacity remains. The one genuinely time-sensitive job.
2. Benefits — Attendance Allowance if your parent is over State Pension age, PIP if under, plus a Pension Credit check.
3. Council tax — the severe mental impairment (SMI) discount, worth 25% or a full exemption, and widely under-claimed.
4. Driving — tell the DVLA and the car insurer straight away.
5. Money protections — dementia-friendly banking, direct debits, scam defences.
6. Care planning — a needs assessment now, before there is a crisis.
7. Support for you — helplines, dementia advisers, a carer’s assessment.

Nothing on this list needs doing in the first week except, arguably, the DVLA if your parent drives. But the first item — the LPA — should not drift, because it depends on something a progressive condition will eventually take.

Why is Power of Attorney the most urgent job?

Because a Lasting Power of Attorney can only be made by someone who has mental capacity, and dementia will, over time, erode it.

Here is the fact that surprises — and reassures — most families: a dementia diagnosis does not remove mental capacity. Capacity is decision-specific. The law asks whether someone can understand, retain and weigh the information for a particular decision at the time it is made — not whether they have a diagnosis. Most people can still validly make an LPA soon after a dementia diagnosis, and many can for a long while afterwards. The diagnosis is the prompt to act, not the barrier.

There are two types of LPA, and your parent should make both:

• Property and financial affairs — lets their chosen attorneys manage bank accounts, pay bills, deal with the pension and, if ever needed, sell property.
• Health and welfare — lets attorneys make decisions about care and medical treatment if your parent ever cannot.

Each LPA costs £92 to register with the Office of the Public Guardian in England and Wales, and you can do the whole thing online without a solicitor for straightforward situations. Scotland and Northern Ireland have their own equivalent systems with different forms and fees.

The alternative, if capacity is lost with no LPA in place, is applying to the Court of Protection for a deputyship — slower, more expensive and more intrusive, with ongoing supervision. We cover that route in what to do when a parent loses mental capacity, and the full process, costs and choices in the Power of Attorney guide. If you do one thing this month, make it this.

What benefits does a dementia diagnosis unlock?

Dementia creates exactly the kind of needs the disability benefits system recognises — but families routinely under-claim, because the needs are cognitive rather than physical and the forms seem to ask about bodies, not memory.

If your parent is over State Pension age: Attendance Allowance. This is usually the first and most valuable claim. It pays £76.70 a week (lower rate) or £114.60 a week (higher rate) in 2026/27, tax-free and not means-tested — savings, pensions and home ownership are irrelevant. The crucial point for dementia: supervision and prompting count. Reminders to take medication, encouragement to eat, watching over someone who gets confused or might leave the hob on — these are care needs, even though nobody is physically lifting or washing anyone. Our guide to Attendance Allowance for dementia explains exactly what to write on the form, and the complete Attendance Allowance guide covers the rules.

If your parent is under State Pension age: the equivalent claim is Personal Independence Payment (PIP) — or Adult Disability Payment in Scotland. Younger-onset dementia claims work on the same principle: describe the prompting and supervision, not just the physical ability.

Then check Pension Credit. Attendance Allowance does not count as income, and an award can add a severe disability addition of £86.05 a week to Pension Credit — or bring your parent into entitlement for the first time. The two claims together can transform a household budget.

And don’t forget the carer. If you or another family member ends up providing 35 or more hours of care a week, an Attendance Allowance or PIP award for your parent is what opens the door to Carer’s Allowance for you. One caution before claiming it: a Carer’s Allowance claim can reduce the severe disability amount in your parent’s Pension Credit, so check both sides of the ledger first — this is exactly the kind of interaction the benefits system hides from families.

Rates correct for the 2026/27 tax year. Benefit rates change every April — always check the current figures on gov.uk.

Which council tax discount do most families miss?

The severe mental impairment (SMI) disregard. Someone who is medically certified as severely mentally impaired — dementia qualifies clinically — and who is entitled to a qualifying benefit such as Attendance Allowance is disregarded for council tax entirely.

In practice:

• If your parent lives alone, the bill goes to zero — a 100% exemption.
• If they live with one other adult (a spouse, or you), that adult gets a 25% discount, as if they lived alone.

The claim is a short council form plus a free GP certificate, it applies in England, Scotland and Wales, and many councils will backdate it to when the conditions were first met — sometimes years. It is widely under-claimed, mostly because nobody tells families it exists. The step-by-step process is in our guide to the council tax discount for dementia. Note the ordering: the qualifying benefit needs to be in place first, which is another reason Attendance Allowance sits above it on this list.

Does my parent have to stop driving?

Not automatically — but the DVLA must be told, and quickly.

A dementia diagnosis is a notifiable medical condition. Your parent (or someone helping them) must report it to the DVLA straight away — in Northern Ireland, the DVA — and failing to do so risks a fine of up to £1,000, and prosecution if there is an accident. Just as important, and more often forgotten: their car insurer must be told too, or the cover may be invalid.

What happens next is an assessment, not a verdict. The DVLA gathers medical information — a questionnaire, reports from the GP or consultant, sometimes an on-road driving assessment — and then decides. Many people in the early stages keep their licence, usually a shorter one reviewed regularly (typically each year). Others choose to surrender the licence voluntarily, which lets stopping be their decision rather than something done to them. The process, the timescales and what to do if a parent will not stop driving are all covered in dementia and driving: the DVLA rules. See also gov.uk on dementia and driving.

How do you protect their money?

The LPA is the foundation — everything else is scaffolding around it. But there is useful scaffolding, and it can go up now, with your parent involved in every decision:

• Tell the bank. Many UK banks have dementia-friendly or vulnerable customer teams that can add support to the account, and most can arrange alternatives if chip-and-pin becomes difficult — ask what your parent’s bank offers.
• Move regular bills to direct debit, so nothing lapses if letters go unopened.
• Get ahead of scams. People with dementia are heavily targeted by phone and doorstep fraud. Call blockers, the Mail Preference Service and the bank’s own fraud alerts all help — ask the bank and see what fits.
• Third-party mandates can give a trusted person limited, formal access to help with an account while your parent still manages it themselves.

If capacity has already been lost and there is no LPA, the routes are a Court of Protection deputyship and, for benefits alone, DWP appointeeship — both explained in what to do when a parent loses mental capacity. The full picture, including what attorneys must and must not do with a parent’s money, is in managing a parent’s money after a dementia diagnosis.

Should you plan care before it’s needed?

Yes — and this is the step families most often leave until a crisis forces it. Dementia is progressive, which is hard to sit with, but it also means care needs are foreseeable. Planning now means decisions get made around a kitchen table instead of a hospital discharge desk.

Two things to do ahead of need:

Ask the council for a care needs assessment. It is free, it is a right regardless of income, and it maps what support would help now and later — from a bit of home care to day centres to telecare. You do not have to act on it immediately; having it on file makes everything faster when needs change.

Small, early additions often buy years of safe independence: a key safe so help can get in, a pendant alarm or falls sensor (see our guide to personal alarms and telecare), a weekly cleaner who is also a friendly pair of eyes. Later decisions — home care versus a care home, or respite care so a caring spouse gets a break — are much easier to make from a base of small supports already working than from a standing start.

Understand the money early. In England, the care means test looks at your parent’s capital: above £23,250 they pay for their own care in full; between £14,250 and £23,250 they contribute; below £14,250 capital is ignored, though income still counts. Knowing this now prevents both panic and bad decisions later — including the understandable but risky urge to start giving money away. The rules, the traps and what the council can and cannot count are in paying for care: the means test explained.

One piece of honesty: families often hope NHS Continuing Healthcare will pay for dementia care. Sometimes it does — but a dementia diagnosis alone rarely qualifies. CHC turns on the complexity, intensity and unpredictability of someone’s needs, not the diagnosis, and most people with dementia are funded through the means-tested route instead. It is still worth understanding, especially as needs become severe: NHS Continuing Healthcare explained.

Who supports you through this?

You have just acquired a second job you never applied for, and doing it well depends on not doing it alone.

• The Alzheimer’s Society (support line 0333 150 3456) covers all types of dementia, not just Alzheimer’s disease, and runs local services — many areas have a dementia adviser who helps families navigate what exists locally after a diagnosis. See alzheimers.org.uk.
• Dementia UK’s Admiral Nurses (0800 888 6678) are specialist dementia nurses for families — a clinical sounding-board for the questions this guide deliberately does not answer. See dementiauk.org.
• The NHS dementia guide at nhs.uk is the reference point for the medical side; the GP remains the coordination point for your parent’s ongoing care, with the memory clinic behind them.
• A carer’s assessment — if you provide regular support, you are a carer in the council’s eyes even if the word feels premature, and you can ask the council for a free assessment of what would help you: respite, equipment, or simply a plan.

Medical questions — treatment, medication, what to expect — belong with the GP, the memory clinic and those helplines. The admin is our lane; the clinical care is theirs.

Who needs to be told, and when?

There is no obligation to tell everyone at once, and your parent should lead on who knows. But some notifications carry practical weight:

• The DVLA and the car insurer — legally required if your parent drives, as above. Straight away.
• The bank — so support can be added to the account rather than the account being frozen by a confused phone call one day.
• Energy and water suppliers — every supplier runs a free Priority Services Register offering extra support to customers in vulnerable circumstances; registration is quick and the details vary by supplier.
• Family — the earlier siblings share the picture, the easier it is to share the admin. Dividing this list between two or three people makes it a fortnight’s work instead of a burden carried by one.

A practical way to split it: one person owns the legal thread (LPA, and the Court of Protection route if it is ever needed), one owns money (benefits, council tax, banking), and one owns care and health admin (needs assessment, GP liaison, the DVLA). Whoever lives closest usually ends up with the in-person jobs, so give the paperwork to whoever lives furthest away — forms do not care about geography, and it stops the nearest sibling carrying everything.

What about Scotland and Northern Ireland?

Most of this roadmap applies UK-wide, with different labels on some doors:

• Powers of attorney — the LPA and its £92 registration fee are the England and Wales system. Scotland has its own continuing and welfare powers of attorney, and Northern Ireland has enduring powers of attorney, each with different forms and fees — the principle that they must be made while capacity remains is the same everywhere.
• Benefits — in Scotland, new pension-age disability claims are for Pension Age Disability Payment rather than Attendance Allowance (same rates), and working-age claims are for Adult Disability Payment rather than PIP.
• Driving — in Northern Ireland the diagnosis is reported to the DVA rather than the DVLA.
• Council tax — the SMI disregard applies in England, Scotland and Wales; Northern Ireland’s rates system has its own reliefs.
• Care means test — the £23,250 and £14,250 capital limits are the English figures; Scotland, Wales and Northern Ireland set their own limits, so check the devolved rules if your parent lives there.

Where do you start today?

Start with the two items that are time-sensitive: the LPA conversation, and the DVLA if your parent drives. Then work down the list at a sustainable pace — benefits, council tax, banking, care planning. None of it needs to be finished this month; all of it is easier for being started early.

And before you fill in any benefit form, take two minutes on our free benefits check — it looks across Attendance Allowance, Pension Credit, Carer’s Allowance and council tax support in one pass, so you know everything your parent may be entitled to before you start the paperwork.