The short version
Around 982,000 people in the UK live with dementia, and more than a third have no diagnosis. Families routinely miss a council tax exemption, a benefit that isn't means-tested, and the one legal document that has to be signed early. Here's the checklist.
An estimated 982,000 people in the UK are living with dementia, according to Alzheimer’s Society, and more than a third of them have no diagnosis. After diagnosis, few families are told about the council tax bill they may not have to pay, the benefit that isn’t means-tested, or the legal document that has to be signed while it still can be.
Dementia takes a lot. It shouldn’t take your rights with it. Here’s what you’re entitled to, and how to claim it.
Dementia is a disability, and the law says so early
Under the Equality Act 2010, you’re disabled if an impairment has a substantial, long-term effect on your day-to-day life. Dementia will almost always meet that test. The Act also has a clause for progressive conditions. Once a progressive condition has any effect on daily activities, and that effect is likely to become substantial, you’re protected. You don’t have to wait until things get bad.
This means shops, banks, GP practices, councils and employers must make reasonable adjustments so that you’re not put at a substantial disadvantage. (In Northern Ireland, the Disability Discrimination Act 1995 does this job instead.) For dementia, adjustments often look like this:
- GP practices: longer or double appointments, the same clinician where possible, a quiet waiting area, reminders by text or phone, and letting a carer come in or speak for you. In England, the NHS Accessible Information Standard requires practices to record and meet your communication needs.
- Banks: slower, face-to-face help, written summaries of anything agreed, and properly set-up third-party access or a registered power of attorney, rather than making a carer pretend to be you.
- Shops and venues: staff who don’t rush you at the till, clear signs, and a quiet time or somewhere to sit.
A “dementia-friendly” business usually has staff trained through Alzheimer’s Society’s Dementia Friends sessions or belongs to a local dementia-friendly community scheme. That’s welcome but voluntary. The legal duty to adjust applies to every business, sticker or not. If you’d rather not explain your condition every time, the free Sunflower lanyard quietly tells staff you may need more time or help.
Lasting Power of Attorney: do it while you can
This is the most urgent item. You can only make a power of attorney while you have the mental capacity to understand it. Leave it too late and your family may need a slower, costlier court order instead. In England and Wales, there are two types of Lasting Power of Attorney (LPA):
- Property and financial affairs: bank accounts, bills, benefits and selling a home. With your permission, it can be used as soon as it’s registered.
- Health and welfare: daily routine, medical care, moving into a care home and life-sustaining treatment. It can only be used once you lack capacity to decide for yourself.
The Office of the Public Guardian charges £92 to register each LPA, so £184 for both. If your income is under £12,000 a year, you pay half (£46). If you get certain means-tested benefits, you may pay nothing. People on Universal Credit are assessed for the half-fee reduction rather than a full exemption. GOV.UK says registration takes 8 to 10 weeks if there are no mistakes.
On going digital: you can fill in the forms online on GOV.UK. As of September 2026, though, you still have to print them, and everyone must sign the same paper original. Digital signatures aren’t accepted. Once the LPA is registered, attorneys can use the online “Use a lasting power of attorney” service to prove to banks and care providers that they can act.
| Nation | What you make | Registered with |
|---|---|---|
| England and Wales | LPA: property and financial affairs, and/or health and welfare | Office of the Public Guardian |
| Scotland | Continuing (financial) and/or welfare power of attorney | Office of the Public Guardian (Scotland) |
| Northern Ireland | Enduring Power of Attorney: property and finances only | Office of Care and Protection, once capacity starts to be lost |
Council tax: the discount most families miss
If a doctor certifies that someone has a severe mental impairment, and they’re entitled to a qualifying benefit, council tax treats them differently. Qualifying benefits include Attendance Allowance, PIP daily living, and Universal Credit with the limited capability for work element.
- England: living alone, or only with other people who qualify or with full-time students, means a 100% discount. Otherwise the person is “disregarded”, which can bring a 25% discount if only one other adult counts. How far back councils will backdate varies.
- Wales: since April 2026, this is called “significant cognitive impairment”. The same exemption and discount structure applies, and backdating to the date of diagnosis is standard across all councils.
- Scotland: a 100% exemption if everyone in the home qualifies, or a 25% discount if all but one adult does. Adult Disability Payment counts as a qualifying benefit.
- Northern Ireland: there’s no council tax. Domestic rates have their own reliefs, so ask Land and Property Services.
Benefits and the Blue Badge
Attendance Allowance is for people over State Pension age who have needed help or supervision for at least six months. It is not means-tested, and you don’t need a carer to claim it. For 2026/27 it’s worth £76.70 or £114.60 a week. Supervision needs from confusion or wandering count.Our Attendance Allowance guide explains how to fill in the form. In Scotland, Pension Age Disability Payment has replaced it, at the same rates. People with young-onset dementia under State Pension age claim PIP instead, or Adult Disability Payment in Scotland.
Dementia can also qualify you for a Blue Badge without any walking difficulty. England’s criteria include struggling severely to plan or follow a journey, and being a constant significant risk to yourself or others near vehicles or in car parks. See our Blue Badge guide.
Carers, going missing, and driving
The carer’s own assessment. A family carer has a separate right to have their own needs assessed. It’s a carer’s assessment in England, a carer’s needs assessment in Wales, an Adult Carer Support Plan in Scotland, and in Northern Ireland it’s done through the health and social care trust. Our carers’ guide covers this, along with Carer’s Allowance (£86.45 a week in 2026/27).
The Herbert Protocol. This is a form you fill in now, with a recent photo, medication, routines, and places that matter to the person. If they go missing, you hand it straight to the police. It’s used by police forces in England and Wales and by Police Scotland, and the PSNI has its own version. Get it from your local force’s website.
Driving. By law, you must tell DVLA if you have dementia, online or on form CG1. Failing to tell DVLA about a condition that affects your driving can mean a fine of up to £1,000. A diagnosis doesn’t automatically end your driving. DVLA looks at the medical evidence and decides. In Northern Ireland, you tell the DVA. If a doctor tells you to stop in the meantime, stop.
Your first-month checklist, and what to do when it goes wrong
- Make both LPAs (or the Scottish or NI equivalent) while capacity is clear.
- Claim Attendance Allowance, PIP or the Scottish equivalent.
- Once a benefit is awarded, ask the GP to sign the council’s severe mental impairment certificate, and ask for backdating.
- Tell DVLA or the DVA.
- Book a carer’s assessment, and a needs assessment for the person with dementia.
- Fill in a Herbert Protocol form and keep it where everyone can find it.
If a benefit is refused, ask for a mandatory reconsideration within one month, then appeal to a tribunal. If the council refuses the council tax discount in England, write to it first. If it doesn’t fix the problem within two months, you can appeal free to the Valuation Tribunal. If a shop, bank or surgery won’t adjust, complain in writing and mention the Equality Act. For banks, the Financial Ombudsman Service is the next step. In England, Scotland and Wales, the Equality Advisory and Support Service can advise free on 0808 800 0082.
A dementia diagnosis starts a long road, but not on the system’s terms. Pick one item from that checklist this week. Make it the power of attorney.
