Plan while you can
After a dementia diagnosis, many people can still make their own decisions for a long time. Having dementia does not automatically mean a person cannot decide things for themselves. But the ability to make some decisions, called mental capacity, may be lost over time.
Legal documents such as a Lasting Power of Attorney can only be made while a person still has capacity. So it is best to act early.
Lasting Power of Attorney
A Lasting Power of Attorney (LPA) is a legal document. It lets you choose one or more people you trust, called attorneys, to make decisions for you if you cannot make them yourself in future. GOV.UK says you must be 18 or over and have mental capacity to make one.
This applies in England and Wales.
Two types
| Type | What attorneys can decide |
|---|---|
| Property and financial affairs | Managing bank accounts, paying bills, collecting benefits or a pension, selling your home |
| Health and welfare | Daily routine, medical care, moving into a care home, and life-sustaining treatment if you give them this power |
You can make one or both. GOV.UK says a property and financial affairs LPA can be used as soon as it is registered, with your permission. A health and welfare LPA can only be used when you are unable to make your own decisions.
Registering an LPA
An LPA must be registered with the Office of the Public Guardian before it can be used. GOV.UK says:
- registering an LPA costs £92, and you may be able to get a reduction or exemption
- it takes 8 to 10 weeks if there are no mistakes in the application
- you can apply online or on paper
Check gov.uk for the current fee.
If there is no LPA
Without an LPA, family may need to apply to the Court of Protection, which can make one-off decisions or appoint a deputy.
Scotland and Northern Ireland
- Scotland: there are continuing (financial) and welfare powers of attorney. They are registered with the Office of the Public Guardian for Scotland. You need to arrange for the document to be drafted, often by a solicitor.
- Northern Ireland: nidirect explains that an enduring power of attorney covers financial matters only. It must be registered with the Office of Care and Protection once the attorney believes the person can no longer manage their affairs.
Advance decisions and statements
Advance decision to refuse treatment
In England and Wales, an advance decision (sometimes called a living will) lets you refuse specific medical treatments in advance, in case you cannot decide at the time. The NHS says it is legally binding if it follows the Mental Capacity Act, is valid and applies to the situation.
If it refuses life-sustaining treatment, such as being put on a breathing machine, the NHS says it must be:
- written down
- signed by you
- signed by a witness
- include a clear statement that it applies even if your life is at risk
Advance statement
An advance statement sets out your wishes and preferences for future care. This might include where you want to be cared for, food you like, or religious beliefs. It is not legally binding, but it helps the people caring for you understand what matters to you.
See caring for someone for more about end-of-life planning.
Wills
It is a good idea to make or update a will early. GOV.UK says that for a will to be legally valid in England and Wales, you must be 18 or over, make it voluntarily and be of sound mind. It must be in writing and signed in front of 2 witnesses over 18, who also sign.
Different rules apply in Scotland and Northern Ireland. GOV.UK recommends getting advice if your will is not straightforward. A solicitor can also advise on whether a person has the capacity to make a will.
Benefits for the person with dementia
Attendance Allowance
Attendance Allowance is for people of State Pension age or older who need help with personal care or supervision because of a disability or health condition, including dementia. GOV.UK says:
| Rate | Weekly amount | For |
|---|---|---|
| Lower rate | £76.70 | Frequent help or constant supervision during the day, or supervision at night |
| Higher rate | £114.60 | Help or supervision during both day and night, or if a medical professional says you are nearing the end of life |
GOV.UK says it is not means-tested, so income and savings do not affect it. You usually need to have needed help for at least 6 months. It can also mean extra Pension Credit, Housing Benefit or Council Tax Reduction.
In Scotland, Attendance Allowance is being replaced by Pension Age Disability Payment from Social Security Scotland. Check gov.uk or mygov.scot for current rates.
People under State Pension age may be able to claim Personal Independence Payment (PIP), or Adult Disability Payment in Scotland. See young-onset dementia.
Benefits for carers
Carer’s Allowance
GOV.UK says you could get Carer’s Allowance of £86.45 a week if you:
- care for someone for at least 35 hours a week
- the person gets a qualifying benefit, such as Attendance Allowance or PIP
- are 16 or over, and not in full-time education
- earn £204 or less a week after tax, National Insurance and expenses
You do not have to be related to, or live with, the person. Carer’s Allowance can affect other benefits, both yours and theirs, so get advice first. In Scotland, the equivalent is Carer Support Payment. Check gov.uk for current rates.
Council Tax
In England and Wales, people with severe dementia may count as “severely mentally impaired” for Council Tax. GOV.UK says:
- you need a certificate from a medical professional, such as a GP
- you also need to be eligible for certain benefits (check with your council)
- if the person lives alone, they may get a 100% discount
- if they live with one other adult who is not disregarded, that adult may get a 25% discount
Some live-in carers can also be “disregarded” for Council Tax, though not usually a partner or spouse. Contact your local council to apply.
Paying for care
Social care
Care at home and in care homes is arranged through the local council. The council can do a needs assessment for the person, and a financial assessment (means test) to see if they will help pay.
The NHS says that in England, if you have savings worth more than £23,250 (the upper capital limit), you will usually have to pay for your own care. The value of your home may count if you move into a care home. A deferred payment scheme may be available. Rules differ in Scotland, Wales and Northern Ireland.
NHS continuing healthcare
NHS continuing healthcare is care arranged and funded entirely by the NHS, for people with long-term complex health needs. The NHS says eligibility depends on assessed needs, not on a diagnosis. Having dementia does not on its own mean someone qualifies, but people with dementia and complex needs may.
There is an initial checklist, then a full assessment if needed. There is also a fast-track route for people nearing the end of life.
If someone does not qualify but lives in a nursing home, the NHS may pay towards the cost of their nursing care.
Getting help
Benefits and care funding can be complicated. The Age UK Advice Line, Carers UK Helpline and Alzheimer’s Society can help. See support and helplines and caring for someone.