Download a PDF of Benefits
This factsheet explains some of the main benefits you may be entitled to as a person with dementia or a carer. Such benefits are yours by right if you qualify. They could make a great difference to your life and should be claimed.
The benefits described are available in England and Wales. Benefits in Northern Ireland largely mirror those in England, but there are some differences (such as with Council tax support). People claiming benefits in Northern Ireland should contact the Benefit Enquiry Line in Northern Ireland (see 'Other useful organisations' at the end of this factsheet for details).
The factsheet contains a large amount of information. The first part looks generally at how to claim benefits, as well as how benefits will be paid with the advent of Universal credit (see 'Universal credit' below). The rest of the factsheet describes specific benefits, which are grouped into the following sections:
- Care and mobility benefits
One or more sections may apply to you and you may find that other sections aren't relevant to your situation.
If you are unsure about what you can claim, or how to fill in a form, ask for information and advice (see 'Other useful organisations' at the end of this factsheet for details).
Please read this factsheet in conjunction with factsheet 431, Benefits rates and income/savings thresholds. which lists the benefit amounts and is updated each year.
How to claim benefits
Claiming benefits can be a complex process. The various aspects are described below:
Qualifying for 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 you having paid National insurance contributions over a period of time, some on the amount of your weekly income and savings, and some on the practical effects of a disability.
This factsheet does not cover every available benefit. There are others you may be entitled to, depending on your situation, so always ask. Sometimes, getting one benefit may increase your entitlement to another and sometimes it may prevent you claiming another benefit, or reduce the amount you can claim. Again, if in doubt, always seek information and advice.
As a minimum, a person with dementia can usually claim Attendance allowance, Disability living allowance (care component) or the new Personal independence payment (the daily living component). Carers should check their entitlement to Carer's allowance.
Where to claim
The Department for Work and Pensions (DWP) is responsible for administering the state pension and benefits. The system is organised so that:
- benefits relating to people of working age are dealt with by Jobcentre Plus offices
- the State pension and other benefits relating to people of state-pension age are dealt with by the Pension Service
- disability benefits are dealt with by the Disability and Carers Service
- in addition, Her Majesty's Revenue and Customs (HMRC) deal with benefits relating to children, as well as tax credits.
(See 'Other useful organisations' at the end of this factsheet.)
Who to ask for information and advice
There are a number of different ways of getting information and advice on benefits, as well as help filling in forms, which can be complicated. Choose the approach that is most convenient for you. You may need to be persistent to get what you need. It might be useful to contact some of the following sources of support:
- A professional, such as a social worker or welfare rights adviser at the local authority, may be able to advise or at least point you in the right direction.
For full details, see 'Other useful organisations' at the end of this factsheet.
Making a claim
You claim benefits either by filling in forms and sending them in the post, or by phoning a contact centre where an adviser will complete the form and send it to you to sign and return. Some benefits can be claimed by completing an online form on the gov.uk website.
Do not delay making a claim just because you don't have all the information you need or the right form. Certain benefits can start on the day you first contact your social security office or other relevant office to say you want to claim the benefit, whether it is in person, by letter or by phone.
You will usually need to send in your claim form as soon as possible. If evidence is required, such as a letter from your doctor that you do not yet have, explain on the form that you will send it later. Some benefits can be backdated if you were eligible before you made the claim, however you will usually need to ask for this to happen.
Keeping records of your claim
When you are making a claim, it is easy to forget what information has been given, to whom and by whom. It helps if you can:
- keep brief notes of the main points of any relevant conversation, who the conversation was with, and the date it took place
- keep copies of any letters or forms you have sent and any you have received - you may need these if there are delays in sorting out your claim, or if your claim is refused and you want to challenge the decision
- have all the relevant details to hand if you want to discuss your claim over the phone or in person.
Challenging a decision
Most people receive the benefits they are entitled to without a problem. 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. Write to the office that made the decision and ask them to revise it. If they do not alter their decision, you may be able to apply to an independent appeal tribunal.
Challenging a decision can be complex, and seeking advice as soon as possible can really help. Ask your local CAB or advice centre, your local authority's welfare rights unit, or the Alzheimer's Society National Dementia Helpline (details at the end of this factsheet).
Help for people not fluent in English
It is often difficult for people who are not fluent in English to know which benefits they can claim, and it is vital that they get appropriate assistance. Sources of support include:
- Citizens Advice Bureau (CAB)
- social security offices and other relevant offices that have access to a telephone interpreting service, or have staff that can interpret or help to find a suitable interpreter (if you know of a suitable interpreter, ask if they will pay)
- information leaflets that are translated into different languages (contact the relevant office to see what is available).
Universal credit will eventually replace many benefits including the means-tested forms of Jobseekers allowance and Employment support allowance, as well as Housing benefit, Income support, Working tax credit and Child tax credit. Contribution-based benefits, Council tax support and disability-related benefits will not be affected.
Universal credit will affect people of working age; people who are over the state pension age for women will not be affected.
The national roll out of Universal credit in Great Britain began in October 2013 and will continue until 2019. The date at which someone starts claiming Universal credit will depend on certain factors. This includes where they live and whether they are already claiming one or more benefits or tax credits that Universal credit will replace. Initially, it will only be claimed by people making new claims for benefit, and people who are sick or disabled are likely to be the last to be 'migrated' to the new benefit.
Care and mobility benefits
Attendance allowance, Disability living allowance and Personal independence payment
People with dementia do not automatically qualify for disability benefits - tests are required to determine the level of need. For people who do qualify, these benefits provide extra help to deal with the practical effects of a disability. They are tax free, and do not depend on National insurance contributions. Payment is not affected by the person's savings or income. A medical assessment may be required. These benefits are paid at different rates, depending on the person's needs. They can be claimed whether the person works or not, and whether they live alone, with their family or with other people.
If your care needs started after the age of 65, or you have not made a claim until then, you should claim Attendance allowance (AA) (see below). This is for help with personal care, not mobility.
If you have care and/or mobility needs and are aged under 65, you should claim Personal independence payment (PIP) instead. You must be under 65 when you make your first claim. PIP is the new benefit that replaced Disability living allowance (DLA) from June 2013. No new claims for DLA have been accepted since this date.
It is important to seek advice if you are already claiming one of these benefits and your needs change. If you are already claiming DLA you should be transferred to PIP by 2018. You don't need to initiate the claim for PIP if you are already getting DLA - you will get an invitation to claim. However, if you don't respond to the invitation, your DLA will be stopped. People who receive PIP before they are 65 will be able to stay on it after they reach 65.
The claim forms for PIP and AA are very detailed and lengthy. There are questions about the activities that the person with dementia finds difficult or impossible to carry out, and about their need for care and supervision. You should consider the bad days as well as the good when thinking about the help needed. It is very important to get advice from a professional (including advice centre staff) on filling in the form to make sure you are giving the information that is needed (see 'Other useful organisations' at the end of this factsheet).
Personal care needs might include supervision of, or help with, activities such as washing. dressing. eating, going to the toilet. turning over or settling in bed, taking medication, avoiding danger, or attending social or recreational activities. If you have a disabling condition such as dementia and are over 65, you may qualify for AA at one of the following levels:
- Higher rate - if you need frequent help or prompting with personal care like washing or going to the toilet, or continual supervision to avoid danger during the day and also need help with personal care either for a prolonged period or several times during the night, or if you need watching over.
- Lower rate - if you need frequent help or prompting with personal care, or continual supervision throughout the day, or help either for a prolonged period or several times during the night, or if you need watching over.
Personal independence payment
PIP has daily living components and (unlike AA) also mobility components. Depending on your situation, you may qualify for either or both. If you have a disabling condition such as dementia and are under 65, you may qualify for the daily living component of PIP at one of the following levels:
- standard rate - if you have a limited ability to carry out daily living activities
- enhanced rate - if you have a severely limited ability to carry out daily living activities.
If you have difficulties getting out and about, you may qualify for the mobility component of PIP at one of the following levels:
- standard rate - if you have limited mobility, which can include the ability to plan a journey or manage it unaided (it's not just about the ability to walk).
- enhanced rate - if you have severely limited mobility (as above).
Making a claim consists of two stages: the basic claim and the claimant questionnaire. The basic claim is made by telephone, or in writing by completing a PIP1 form (see Personal independence payments in 'Other useful organisations'). This is to establish the claim, and to ensure that you are eligible to apply.
Once the basic claim has been successfully made, a 36-page claimant questionnaire (PIP2 - How your disability affects you) will be sent to you. This is aimed at gathering more information about how your health condition or impairment affects your day-to-day life. This form must be returned within one month, though exceptions may be made in some cases - contact the DWP. During the basic claim stage, people who may have additional support needs, for example because of a cognitive impairment, should be contacted by the assessment providers to attend a medical assessment.
The assessment (either in writing on the PIP2 or in person) is based on questions about activities. People can be assessed as having limited ability or severely limited ability.
Disability living allowance
Although this benefit is being phased out for people aged 16-64, some existing claimants may still be re-assessed for it when their claim comes up for review. This is because they live in an area where PIP isn't yet being introduced for existing claimants. If this affects you, you will need to complete the form as you have in the past, referring to your care and mobility needs as they currently are. You will be re-assessed for PIP at a later date.
If you go into a care home or hospital. temporarily or permanently, get advice about how your AA, PIP or DLA might be affected.
Benefits if unable to work
Statutory sick pay
This is paid by employers to employees below retirement age, for up to 28 weeks in any one period of sickness. To qualify, you must earn a set amount or more each week before tax (see factsheet 431 for current amount) and must be off work because of sickness. This benefit is paid at a flat rate and is taxable.
Employment and support allowance (ESA)
In October 2008 a new benefit was created called Employment and support allowance (ESA). It has two forms - contributory ESA (which replaced Incapacity benefit) and income-related ESA (which replaced Income support claimed on the grounds of incapacity for work). People with Incapacity benefit or Income support on the grounds of incapacity for work are being transferred to Employment and support allowance.
You can still receive Income support if you qualify on grounds other than incapacity - see 'Income support' below.
ESA may be claimed by people who are under the State pension age for women (see 'State pension' below) who have a limited capacity to work because of an illness or a disability.
A work capability assessment will take place within the assessment phase (the first 13 weeks) that follows your initial claim for ESA. The first part of this work capability assessment will decide if you have a limited capability to work and therefore qualify for ESA. The second part of the assessment will decide what level of work-related activity you can do. If you can't undertake work-related activity (such as training courses or voluntary work) then you will be categorised in the 'support group'. Otherwise you will be placed in the 'work-related activity group'. If you are put in the support group, you will receive a higher level of ESA. If you are put into the 'work-related activity group', you will be expected to perform activities such as attending interviews at the job centre about how your condition is and whether you are getting closer to being able to work or look for work.
Normally, you need to have paid enough National insurance to be eligible for contributory ESA, and claims for contributory ESA for people in the 'work-related activity group' are limited to 12 months. If you are in the support group, contributory ESA is not restricted to 12 months.
Income-related ESA tops up the amount of money you have to a minimum level that you need to live off, and it is means-tested in a similar way to the previous Income support benefit. You can receive income-related ESA on its own or at the same time as contributory ESA and it can help with mortgage interest payments and some other housing costs.
The amount of ESA that will be paid is determined through a fairly complicated set of requirements. The money you will receive depends on your capacity to work, your past National insurance contributions,
how long you have been claiming and whether you are entitled to one or both of the types of payment - income-related and contributory benefits. The payment can be backdated for up to three months and will continue until you are able to work or look for work. It is important to seek advice if you think that you are not getting the right amount of money (for more details see factsheet 431, Benefits rates and income/savings thresholds ).
Both types of ESA are paid at a lower rate for the initial 13-week assessment period. Then for people who are still entitled, payment continues at the determined rate. People eligible for income-related ESA may also be entitled to other benefits such as help with housing costs and prescriptions.
Between October 2013 and October 2019 the new Universal credit is replacing income-related ESA and Income support, in addition to a number of other means-tested benefits for people of working age.
This benefit can be paid to carers who spend at least 35 hours per week looking after someone who is receiving DLA (care component at highest or middle rate), PIP (daily living component at either rate) or Attendance allowance (at either rate). The carer does not have to be related to, or living with, the person they provide care for.
The benefit does not depend on National insurance contributions, but it is taxable. It gives most carers who are under State pension age a National insurance credit each week to help protect their State pension rights.
Carers must be over 16 when they first claim. In some cases, the person being cared for could lose some of their means-tested benefits if Carer's allowance is paid, so it is important to seek advice before making a claim.
Carers are not eligible for Carer's allowance if they earn more than a limited amount each week after the deduction of allowable expenses (such as Income tax and pension contributions), if they are in full-time education, or if they are receiving more than a specified amount from certain other pensions or benefits.
People entitled to Carer's allowance may be entitled to additional amounts in other benefits they are claiming, such as Income support or Pension credit. This may be the case even for those who are entitled to Carer's allowance but cannot receive the payments because they are already receiving certain other pensions or benefits. That is, if the person qualifies for Carers allowance but receives an 'overlapping benefit' - where you are eligible for different benefits but can only receive one at any one time. If you are a carer and are unsure about your entitlement, you should seek advice from Carers UK (for details see 'Other useful organisations').
Depending on their income, a carer may be able to claim a higher rate of benefit if their spouse or partner is dependent on them financially. If a carer has dependent children, they may also be able to claim Child tax credit.
The Pension Service
DWP set up the Pension Service to deal with the State pension and other pension-related benefits. If you have reached, or are nearing, State pension age, the Pension Service will write to you and give you a phone number to call for information. Your queries will usually be dealt with over the phone or by post, but the service can arrange for someone to visit you at home, if necessary. For more information see 'Other useful organisations' at the end of this factsheet.
A State pension is paid to people who reach State pension age if they have made sufficient National insurance contributions. It is taxable. The State pension age for men is currently 65. The State pension age for women born on or before 5 April 1950 is 60. The pension age for men and women is gradually rising so that by 2020 it will be 66. After that it will rise to 68 for both men and women.
People who do not have sufficient contributions may receive a reduced State pension or no pension at all. Married women and widowed people, divorced people, civil partners and same sex spouses who do not have sufficient contributions of their own may be able to claim on the contributions of their partner or former partner and should seek further advice.
People may also qualify for extra pension for a number of reasons. People over 80 who do not qualify for a State pension or full State pension may be eligible for an over-80s pension, which does not depend on National insurance contributions.
You can claim your pension if you are still working. However, if you want to, you can defer your pension and earn extra money when you draw it, either as a lump sum or a higher weekly pension.
If you are entitled to a State pension, the Pension Service should contact you about four months before you reach State pension age. If you have not heard anything three months before reaching State pension age, contact your social security office or the Pension Service claims line (see 'Other useful organisations').
There is going to be a new State pension from April 2016, but only for people who reach State pension age on or after April 2016. The basic pension will be set at a higher level for these new retirees, but they will need a longer National insurance record of their own, and certain other pension additions will be phased out.
If you are below State pension age but unable to work, you may be able to protect your State pension rights by getting National insurance contribution credits. These are automatically given to people receiving certain benefits, such as Incapacity benefit, Employment and support allowance and Carer's allowance. Alternatively, carers who do not receive these benefits may be able to protect their rights through a weekly carers credit to build up their State pension entitlement. This scheme replaces the Home responsibilities protection scheme and may make a considerable difference to your State pension. Previous protection built up under the Home responsibilities protection scheme will be incorporated into the new system. If you think you may be eligible, seek advice.
If you are unable to claim the State pension, or it is not enough for you to live on, you may be entitled to claim other benefits, such as Pension credit.
The age at which men and women are eligible to claim Pension credit will increase in line with the changes in the State pension age for women (see 'State pension' above). Pension credit is a means-tested benefit. It has two parts: Guarantee credit and Savings credit (although the latter will begin to be phased out for new claims from April 2016).
Guarantee pension credit works by topping up a person's income if they are on a low income (see factsheet 431 for current amounts). Savings credit is extra money for people aged 65 and over who have an income level above the basic retirement pension level, or who have savings or investments. It is based on the total amount of income that a person has, including income received from private or occupational pensions.
Some people are entitled to both the Guarantee and Savings credits, while others are entitled to one or the other. People eligible for Pension credit may also qualify for other benefits such as help with housing costs, and NHS costs.
Help for people on a low income
Income support is a means-tested benefit to help people with basic living expenses who have not reached the qualifying age for Pension credit and who are not required to be available for work, such as carers. There are strict criteria for people who qualify for Income support.
You may be able to claim Income support if you have a low income and limited savings, or limited joint savings with a partner. Whether or not you qualify may depend on the number of hours you and any partner work each week. Income support can be paid in full or as a top up to other pensions and income. If you have a partner, you must claim Income support together.
Income support does not depend on National insurance contributions, but savings and income (including income from most benefits) will be taken into account. Income from AA, DLA and PIP will be ignored when calculating weekly income, but savings over a certain amount usually mean you cannot receive Income support.
The amount of Income support paid varies according to age, existing income and savings, and entitlement to any available premiums. Premiums are awarded to people receiving certain disability benefits and carers receiving the Carer's allowance, for example, so it is important to seek advice.
If you are a homeowner, you may receive help with mortgage interest payments, interest payments on loans for certain repairs and improvements, ground rent and some service charges. This will depend on the circumstances of those living in your home. You may not qualify for immediate help with your housing costs.
You can no longer claim Income support if you cannot work because you have a disability or illness. You should claim ESA instead - see 'Benefits if unable to work' section above.
Some people of working age who are not working, or are working less than an average of 16 hours per week, may claim Jobseeker's allowance. They must be capable of work and actively seeking work.
Jobseeker's allowance is in two parts:
- contribution-based - paid for 26 weeks, to people with sufficient National insurance contributions
- income-based - calculated in a similar way to Income support.
Social fund reform
Changes contained in the Welfare Reform Act 2012 mean that certain elements of the Discretionary social fund scheme, such as Community care grants and some Crisis loans (including rent in advance), were abolished in April 2013. New locally-based schemes are being delivered by local authorities in England and devolved to the governments of Scotland and Wales.
Crisis loan alignment payments
In April 2013, Crisis loan alignment payments, which are needed because of delays with benefit payments, were replaced by a new national scheme of short-term benefit advances. This is administered by DWP.
Budgeting loans are loans that are available to some people on income-related benefits to help to pay for a range of essential things such as rent, furniture and clothing. These will continue to be available until the new Universal credit is fully rolled out. As people migrate across to Universal credit they will have access to a new system of Budgeting advances that will replace Budgeting loans for Universal credit recipients.
If you are responsible for a funeral, you may be able to claim payment towards reasonable costs, providing you are the closest surviving relative and you are receiving certain benefits such as Income support, income-based Jobseeker's allowance or ESA, or Pension credit. Check your entitlement before making arrangements. You can claim up to three months after the funeral. The funeral payment often has to be repaid from the assets of the person who has died.
Cold weather and winter fuel payments
Cold weather payments are paid if the average temperature in your area falls or is forecast to fall to freezing point or below for seven consecutive days. These payments are made automatically to people receiving some means-tested benefits including Pension credit and Income support.
If you are of eligible age, you will normally qualify for a winter fuel payment to help with the cost of fuel. See factsheet 431 for current amounts. The age at which people receive a winter fuel payment is rising because it is linked to the State pension age for women, which is also increasing (see 'State pension' above). People over 80 may be eligible for more money. Many people living in care homes are not eligible for this payment. This benefit is not means-tested or taxable, and will not affect any other benefits you are claiming. For more information, or to apply, contact the Winter fuel payment helpline (see 'Other useful organisations' below).
Help with housing costs
If you receive Income support, income-related Employment and support allowance, income-related Jobseeker's allowance or Guarantee credit, you may qualify for help with your rent, Council tax and NHS costs. You may also be eligible to apply for help with your rent and Council tax if you are on a low income, such as low wages or Savings credit.
Support for mortgage interest
You may get help paying some of your mortgage interest, if you are entitled to Income support, income-related ESA, income-based Jobseeker's allowance, or Pension guarantee credit (and Universal credit when eventually introduced).
Housing benefit is a benefit to help pay for rent. It is assessed and paid for by local councils. The amount of benefit paid will normally depend on the person's income and savings, and the rent being charged. You may not be eligible for Housing benefit if you have savings over a set amount.
People renting from a private landlord usually have their Housing benefit limited to what is known as the local housing allowance. Local housing allowance rates can be found on local authority websites. In some instances, a room for a carer can be included in the amounts.
Similar provisions now also apply to people of working age only, living in social sector housing. The under-occupancy size criteria (often referred to as the bedroom tax) means that, if it is considered that you have too many bedrooms, the amount of your rent eligible for housing benefit will be cut by 14% (for one bedroom too many) or 25% (for two or more bedrooms too many).
Housing benefit is also being capped for working age tenants under the Benefit cap provisions, which currently apply to Housing benefit but will also apply to Universal credit as it is implemented around the country. Existing claimants may therefore find their Housing benefit reduced if their income is more than a certain amount (see factsheet 431, Benefits rates and income/savings thresholds ). People getting DLA or PIP should not be capped.
If you live with a partner, only one of you should apply for Housing benefit. However, your income and savings will be considered jointly and other adults living with you will affect the amount of Housing benefit you can receive.
Housing benefit does not depend on National insurance contributions and is tax free. It can be claimed at the same time as Income support, income-based Jobseeker's allowance, income-related ESA or Pension credit. A claim form for Housing benefit is included in the application packs for means-tested benefits.
If you are not applying for another benefit you can ask the local authority for an application form.
Help with Council tax
The Council tax is set by local authorities to pay for the services they provide. The amount of Council tax support that a person or couple is eligible for depends on income and savings, and the amount of Council tax due. People under pension age may be asked to pay a contribution to the tax even if on a low income. For information on Council tax support discounts, reductions, disregards and exemptions see factsheet 414, Council tax .
Help with NHS costs
People receiving Income support, income-based Jobseeker's allowance, Pension credit, Working tax credit (a payment that you may qualify for if you work but are on a low income) or income-related ESA (providing their capital is less than a certain amount, see factsheet 431, Benefits rates and incomes/savings thresholds ), may be eligible for:
- free prescriptions (prescriptions are also free for anyone aged 60 and over)
- free dental treatment from NHS dentists
- free sight tests and vouchers towards the cost of glasses - sight tests are also free for anyone aged 60 and over
- help with hospital travel costs for NHS treatment and free appliances for outpatients or day patients.
NHS hearing aids are prescribed by an NHS consultant to anyone needing them on free loan. They are fitted, serviced and supplied with batteries free of charge.
NHS low income scheme
If you do not receive any of the above benefits but are on a low income and have savings below the limit, you can apply for help towards NHS health costs. The amount of financial help you receive will depend on your savings and income.
You need to complete form HC1, which you can get from Jobcentre Plus offices and NHS hospitals. Some GPs, dentists and opticians may also stock them. If you live in a care home you can apply on a special short form called HC1(SC). Ask the care home manager or a carer for this form or use the HC1 form.
For more information on help with NHS costs, see the booklet HC11 Help with health costs, available from any of the above sources or search for 'HC11' on the Department of Health website (see 'Other useful organisations').
Benefits in hospital
Benefits may be affected if either a carer or a person with dementia goes into an NHS hospital for more than a short stay. In this case, it is important to seek advice and inform the local social security office, Jobcentre Plus office, Pension Centre or DWP Disability and Carers Service as appropriate.Source: www.alzheimers.org.uk