How to claim benefits if you're affected by dementia
Find out more about claiming benefits, including how to claim, where to get support and how to complain.
- Am I entitled to benefits?
- How to claim benefits
- Where and when to claim
- Managing benefits for someone else
- Changes to circumstances
- Who can help me claim?
- If a claim is turned down
Benefits are payments from the government to help people with specific needs such as:
- those on low incomes
- those who have needs because of a disability (which could be due to dementia)
- those who are unable to work
- those who are caring for someone.
If you are affected by dementia, you may be able to claim some of these benefits.
To qualify for any benefit, you will have to meet certain conditions. These vary according to the type of benefit. Some benefits depend on:
- whether you’ve paid or been credited with National insurance contributions over a period of time
- the amount of your weekly income and savings (known as ‘means tested’ benefits)
- the effects of a disability or condition on your daily life or mobility
- whether you are subject to immigration control (a Citizens Advice adviser can help with specific queries relating to your status).
Sometimes, getting one benefit may increase your entitlement to another benefit, or it may prevent you from claiming something else. The total amount you can receive in benefits is limited. This is known as the Benefits cap.
How to claim benefits
Different benefits are claimed in different ways – for example, by:
- filling in the relevant forms yourself and sending them in the post, or
- phoning a contact centre where an adviser will complete the form and send it to you to sign and return, or
- completing an online form on the government website. Universal credit needs to be claimed online unless you aren’t able to do so. Citizens Advice has Help to Claim advisers who can provide support with this
When making a claim, it can be hard to keep track of all the information you’ve been given and who gave it to you. It’s best to:
- keep notes of the main points of conversations, such as:
- the benefit
- which organisation you are claiming it from
- the name of the person you spoke to
- the date when the conversation took place
- keep copies of any letters or forms you have received, as well as copies of those you have completed and returned. You may need these if there are delays with your claim being processed, or if your claim is refused and you want to challenge the decision
- have all the relevant details with you if you want to discuss your claim over the phone or in person. It can help to arrange your documents in order of date.
Where to claim benefits
The Department for Work and Pensions (DWP) is responsible for the State pension and benefits. The system is organised as follows:
|Type of benefit
|Who organises it?
Benefits for people of working age (including Universal credit)
State pension and other benefits for people at state pension age
|Carer’s Allowance Unit
|Tax credits and benefits relating to children
|Her Majesty’s Revenue and
When to claim benefits
- Even if you don’t have all the information you need, you should not delay making a claim. Some benefits can start on the day you first make contact to say you want to claim the benefit, whether you do this in person, by letter or by phone.
- You will usually need to send in your claim form by a particular time. If you’re required to send evidence you don’t yet have, such as a letter from your doctor, explain on the form that you will send it later. If you don’t manage to return the claim form in the time given, your claim may be cancelled. If you have good reason for the delay, you could seek advice and appeal this.
- Some benefits can be backdated (where you can claim for an earlier period) if you were eligible before you made the claim. However, you will usually need to ask the DWP department in charge of that benefit or make a backdate request on the claim form for this to happen.
Becoming an appointee to manage benefits on someone else's behalf
If someone is not able to manage their benefits themselves, another person can be chosen to receive the benefits on their behalf. This person is known as an ‘appointee’.
For example, if you have dementia and someone else is prepared to act on your behalf, they should contact the DWP and request an appointeeship assessment. If you are the person’s carer you might do this. The DWP will then arrange a visit to assess the suitability of an appointee.
The appointee could be:
- a close relative who either lives with the person with dementia or visits them regularly
- a friend or neighbour
- a professional, such as a representative from the local authority or a solicitor.
If a person lacks the mental capacity to manage their benefits and doesn’t have someone who can act as an appointee, their local authority should be contacted.
An appointee is responsible for making and maintaining benefit claims and collecting payments on the person’s behalf. The appointee is also responsible for reporting any changes in the person’s circumstances to the DWP.
Appointeeship is only used to manage the person’s benefits. If the person has other assets there are other ways that these can be managed on their behalf, such as a Lasting power of attorney or deputyship in England and Wales, or Enduring power of attorney and controllership in Northern Ireland.
If either a person with dementia or a carer goes into an NHS hospital for more than a short stay, it may affect the benefits that each of them receives. These may include:
Contact the correct office for each benefit, don’t assume the information will be passed on. Remember to also let them know when you or the person you care for is discharged.
If someone moves to a care home some of their benefits may be affected, especially if their stay is permanent. This will depend on who is paying for the person's care.
In the financial assessment to decide how the care will be paid for, certain benefits must not be taken into account and the person may continue to receive them. These include the mobility part of DLA or PIP. However, if the person is in a nursing home, the mobility part of DLA or PIP are likely to stop.
If the person pays for their own care
If the person is fully self-funding (paying for their own care), they will still be entitled to some benefits such as AA, DLA (care component) or PIP (daily living part). If they aren’t fully self-funding, these benefits usually stop after they have been in care for four weeks.
Carer’s allowance will also usually stop four weeks after the person you have been caring for moves into a care home.
If the person's care is paid for by the NHS
If the care home placement is funded by NHS Continuing healthcare (CHC) the person is treated as if they are in a hospital and their benefits are affected, but all of the care costs are funded by the NHS.
It is important to inform the benefit provider about any changes in who funds your care.
Who can help me claim benefits?
There are many ways of getting information and advice on benefits, as well as help with filling in claim forms.
Some of the forms are long and complicated, and many people find them challenging. It’s important to ask for help if you need it. You have a right to claim benefits that you are entitled to. Sometimes you need to be persistent to get these.
It can be useful to get help from:
- a welfare rights adviser at the local authority, who may be able to advise or can tell you where to get a benefits check
- the government website, where the Department for Work and Pensions (DWP) provides information about benefits and claim forms
- the Pension Service or local Jobcentre Plus office, who should have information, leaflets and claim forms. They may also be able to put you in contact with the DWP local visiting service, which offers home visits for vulnerable people (including those with dementia) to help with benefit applications
- your local Citizens Advice – some areas have local benefits advice services
- Advicelocal, a website that can help you find local advice services
- an online benefits calculator that works out what you could be entitled to in some situations. Note that this is only based on the information you can put into the calculator and so you should seek advice related to your personal situation to ensure that making or transferring a claim will leave you better off.
If you need information about benefits in languages other than English, there are lots of ways to get this. You can ask for an interpreter if you’re calling to enquire about a benefit. The service should either put you in touch with a staff member who can interpret, or arrange for another service to do this.
You can also ask the relevant office for written translated information or contact Citizens Advice for more information.
What if a benefits claim gets turned down?
Many people receive the benefits they are entitled to with no problems. However, if you believe your claim has been incorrectly turned down, or that you have not been awarded the right amount of benefit, you have the right to challenge the decision.
To do this, call or write to the office that made the decision about your benefit. Ask them for a ‘mandatory reconsideration’, explaining why you are challenging the decision.
If you are claiming Universal credit, you can do this using your online account. You can also download, complete and print out a mandatory reconsideration request form from the government website.
You can ask for a reconsideration if any of the following conditions apply:
- You think the office dealing with your claim has made an error or missed important evidence.
- You disagree with the reasons for the decision.
- You want to have the decision looked at again.
Some decisions can’t be reconsidered – if yours can’t be, your decision letter will say this.
If the office does not change its decision after a mandatory reconsideration, you may be able to apply to an independent appeal tribunal. Information on how to appeal will be sent to you with the result of the mandatory reconsideration. You can appeal online or by post.
You normally need to ask for mandatory reconsideration within one month of the date of the decision. If the decision isn’t changed then you normally have one month to appeal. It may be accepted later than this if you have good reasons for the delay. Challenging a decision can be complex, and seeking advice as soon as possible can really help.
Ask your local Citizens Advice or welfare advice centre (if you have one). Your local authority may have a welfare rights unit who you could talk to.
If you have a complaint about how your claim was dealt with – whether or not you are challenging a benefit decision – tell the office you have been communicating with as soon as possible.
You can contact them by phone, in person or in writing using the contact details at the top of any letters you have received.
When you contact an office, it will help if you include:
- your National insurance number
- your full name, address and contact numbers
- what happened, when it happened and how it affected you
- what you want to happen to put things right.
Find out more about other organisations that can give further information on benefits for people affected by dementia.
How we can support you
Call our support line for advice, or connect with people in similar situations through our online community.
Dementia Support Line
Dementia Support Forum
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