Alzheimer's Society

This factsheet explains some of the main benefits that people with dementia and their carers may be entitled to. The benefits described are available in England. Different arrangements apply in Wales, Northern Ireland and Scotland. Such benefits are yours by right if you qualify. They could make a great difference to your life, and should be claimed.

Some of the benefits described in this factsheet apply to people with dementia, and some to carers. If you are unsure about what you can claim, or how to fill in a form, ask for information and advice (see 'Useful organisations', at the end of this sheet, for details).

You will need to read this factsheet in conjunction with Factsheet 431, Benefits rates and income/savings thresholds, which is updated each year.

How to claim benefits

Claiming benefits can be a complex process. Here, it is broken down into the following stages: qualifying for benefits, where to claim, who to ask for information, making a claim, keeping records of a claim challenging a decision and help for people not fluent in English.

Qualifying for benefits

To qualify for any benefit, the person with dementia or their carer will have to meet certain conditions. These vary according to the type of benefit. Some benefits depend on a person having paid national insurance contributions over a period of time, some on the amount of their weekly income and savings, and some on the practical effects of a disability.

This factsheet does not cover all the benefits that exist: you may be entitled to others, 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, someone with dementia will usually claim attendance allowance or the disability living allowance care component, and carers should check their entitlement to carer's allowance.

Where to claim

The Department for Work and Pensions (DWP) is responsible for distributing the state pension and benefits. The system is organised so that:

• benefits relating to people of working age, including children and families, 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 Pensions Service
• disability benefits are dealt with by the Disability and Carers Service.

If you are unsure about which service should deal with your enquiry, contact the Benefits Enquiry Line (see '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 whichever approach is most convenient for you. You may need to be quite persistent in order to get what you need. You may find it useful to contact some of the following:

• A professional, such as a social worker, may be able to advise or point you in the right direction.
• Your social security office, pension centre or Jobcentre Plus office will stock explanatory leaflets and claim forms and may be able to help, but there are often long waits. Find your local branch in the business section of the phone book, and phone to see if you can arrange an appointment or give information over the phone. They may also be able to arrange for a representative to visit you at home if you can't get out.
• The Department for Work and Pensions provides information on benefits and claim forms.
• Other organisations, including your local Citizens Advice Bureau (CAB) or advice centre, and a number of national helplines, can advise you on what benefits you may be entitled to, and how to claim.

For full details, see the 'Useful organisations' section.

Making a claim

Benefits are claimed by filling in forms and sending them to the relevant address (see 'Where to claim', above). Do not delay in 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 in person, by letter or by phone, saying you want to claim the benefit. However, 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.

Keeping records of your claim

When you are making a claim, it is easy to forget what information has been given, and by whom. It helps if you can:

• keep brief notes of the main points that have arisen in 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, so get advice as soon as possible. Ask your local CAB or advice centre, your local authority's welfare rights unit, the Benefit Enquiry Line or the Alzheimer's National Dementia Helpline (detailed 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 discover what benefits they can claim. It is vital that they get appropriate assistance - for example:

• Someone within the person's own community or a local group may be able to help the person get information and advice (ask your CAB or the local Racial Equality Council, if there is one in your area).
• The Benefit Enquiry Line can offer help to people who are not fluent in English.
• Some social security offices and other relevant offices now have access to a telephone interpreting service run by an outside company offering a very wide range of languages. Ask if this is available. Alternatively, they may have staff who can act as interpreters for some languages, or may be able to find an interpreter. If you know of a suitable interpreter, ask if they will pay.

Some leaflets are now translated into Arabic, Bengali, Chinese, Gujarati, Punjabi, Somali, Urdu, Vietnamese and Welsh. Your social security office or other relevant office may be able to supply you with printed or audio versions or you can download printed versions from the Department for Work and Pensions website (see 'Useful organisations').

Care and mobility benefits

Attendance allowance and disability living allowance
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, nor usually by their income. A medical examination is not normally required. They are paid at different rates, depending on the person's needs. They can be claimed whether the person lives alone, with their family or with other people.

People who have care and/or mobility needs before they are 65 should claim the disability living allowance, and must be under 65 when they make their first claim. Disability living allowance has a personal care component and a mobility component. Depending on their situation, they may qualify for either or both.
People whose care needs start after the age of 65, or who have not made a claim until then, should claim attendance allowance. This is for help with personal care only, and has no mobility component.

It is important to seek advice if a person is already claiming one of these benefits and their needs change.

The claim forms for disability living allowance and attendance allowance are very detailed and lengthy. There are questions about activities that the person with dementia finds difficult or impossible to carry out, and about their need for care or supervision. It is a good idea to get advice from a professional or an advice centre on filling in the form, to make sure you are giving the kind of information that is needed.

Assistance with personal care

The disability living allowance care component and the attendance allowance can be claimed by people who need help with personal care or who need to be supervised to avoid risk to themselves or others.

Care needs might include help or prompting with activities such as washing, dressing, eating, going to the toilet, turning over or settling in bed, or taking medication. They may also include assistance with social and recreational activities. Supervision needs include any watching over that is necessary to avoid certain risks inside or outside the home. The person with dementia may quality at one of the following three different levels:

• If they need frequent help or prompting with personal care, or continual supervision to avoid danger during the day, and help with personal care or supervision either for a prolonged period or several times during the night, they are likely to qualify for the top rates of attendance allowance or disability living allowance care component.
• If they need frequent help with personal care or supervision either during the day or night, they are likely to qualify for the lower rate of attendance allowance or middle rate of disability living allowance care component.
• If they can show that they need help with personal care for some of the day or cannot prepare a main cooked meal for themselves without assistance, they may qualify for the lower rate of disability living allowance.

Mobility needs

The disability living allowance mobility component can be claimed by people with walking difficulties that develop before their 65th birthday. They must claim before their 65th birthday, but once the allowance is awarded it can continue to be paid after the person is 65. It is paid at two rates:

• If the person is unable to walk due to physical difficulties, such as paralysis or weakness, or their walking is severely limited - for example, by pain, stiffness or discomfort - they may qualify for the higher rate.
• Alternatively, they may qualify for the lower rate on the grounds that, although they are able to walk, they need supervision when out of doors because they are at risk, because they are likely to get lost, or because they need guidance in getting from one place to another.

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, a person must earn a set amount or more each week before tax (see Factsheet 431 for current amount), and must be incapable of work. Payment of this benefit depends on the employee's average weekly earnings, and is taxable.

Incapacity benefit
This benefit may be claimed if someone under state pension age is unable to work because of an illness or disability. It can be paid once statutory sick pay has ended, or if the person is not entitled to statutory sick pay. They must have paid sufficient national insurance contributions. If the person is entitled to the highest rate of the care component of the disability living allowance, they can receive long-term incapacity benefit after 28 weeks.

Incapacity benefit is paid at three different weekly rates, depending on how long the person has been claiming it. It may be reduced if someone has pension income as a result of their employment ending. It is not reduced by other income or savings, but it may be taxed.

A person cannot usually claim incapacity benefit once they reach state pension age. However, if they are already claiming short-term incapacity benefit before they reach state pension age, or if their incapacity started before then, they can continue to claim it at a special rate for up to a year, but they cannot claim it in addition to their state pension.

Carers' needs

Carer's allowance
This benefit, formerly known as invalid care allowance, can be paid to carers who spend at least 35 hours a week looking after someone receiving either attendance allowance or the disability living allowance care component at the highest or middle 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 the past payment of national insurance contributions, but it is taxable. It gives most carers 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 benefits if carer's allowance is claimed, 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 a week after the deduction of allowable expenses, if they are in full-time education, or if they are receiving more than a specified amount from certain other pensions or benefits. However, they may be entitled to an extra premium if they are receiving certain other benefits, such as income support or pension credit, so anyone unsure should seek advice.

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.

Retirement

Pensions Service
The Department for Work and Pensions has set up the Pensions Service to deal with the state pension and other pension-related benefits. If you have reached, or are nearing, state pension age, the Pensions Service will write to you when it has set up a pension centre to cover your area and will 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. If there is no pension centre in your area, continue to contact your local social security office as usual. For more information, see 'Useful organisations', at the end of this factsheet.

State pension
A state pension is paid to people who reach state pension age if they have enough national insurance contributions. It is taxable. The state pension age is currently 60 for women born on or before 5 April 1950, and 65 for men. The state pension age for women will increase gradually from 2010, so that by 2020 it will be 65.

People who do not have enough contributions may receive a reduced state pension or none at all. Married women, divorced women and widowed people who do not have enough contributions of their own may be able to claim on the contributions of their partner or former partner. They should seek 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 prefer, you can defer your pension for up to five years and earn extra pension.
If you, or a person you are caring for, are unsure what pension you are likely to get, call 0845 3000 168 and ask for form BR19 to apply for a state pension forecast, or download the form from the website (see 'Useful organisations').

If you are entitled to a state pension, the Pensions 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 Pensions Service claims line (see 'Useful organisations).

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, carer's allowance or jobseeker's allowance. Alternatively, carers who do not receive these benefits may be able to protect their rights through the Home Responsibilities Protection Scheme, which may make a considerable difference to their state pension, so they should 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 certain other benefits, such as pension credit.

Pension credit
Pension credit is an entitlement for people aged 60 and over. It was introduced in October 2003 to replace income support (also known as minimum income guarantee - see below). Pension credit has two parts: guarantee credit and savings credit. Some people are entitled to both the guarantee and savings parts, while others are entitled to one part or the other.

• Guarantee credit replaces minimum income guarantee, and works in the same way, by topping up a person's income to a set level (see Factsheet 431 for current amounts).
• Savings credit is extra money for people aged 65 and over who have income 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.

You can claim pension credit by filling in a claim form, or by contacting the Pensions Service in person or by phoning the claim line (see 'Useful organisations').

Some other benefits

Income support
Income support is an income-related benefit to help people under 60 with basic living expenses. People over 60 should claim pension credit instead (see 'Pension credit', above).

People may be able to claim income support if they have a low income and limited savings, or limited joint savings with a partner. Whether or not they qualify may depend on the number of hours they and their partner work each week. Income support can be paid in full or as a top-up to other pensions and income.

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 attendance allowance and disability living allowance will be ignored when calculating weekly income, unless the person is in a care home, but savings over a certain amount usually mean you cannot get 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 receive income support, you are likely to qualify for housing benefit and/or council tax benefit and NHS benefits. You are also eligible to apply for grants or loans from the Social Fund.

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.

Jobseeker's allowance
Some people of working age who are not working, or are working less than an average of 16 hours a week, may claim jobseeker's allowance instead of income support. They must be capable of work and actively seeking work.

Jobseeker's allowance is in two parts:

• Contribution based - This is paid for 26 weeks, to people with enough national insurance contributions.
• Income based - This is calculated in a similar way to income support.

Housing benefit
Housing benefit is a social security 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 will not be eligible for housing benefit if you have savings over a set amount.

If you live with a partner, only one of you should apply. However, your income and savings will be considered jointly.

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 or pension credit. A claim form for housing benefit is included in the application packs. Once the claim has been completed, it should be sent to the local council.

Council tax benefit
The council tax is set by local authorities to pay for the services they provide. The amount of council tax benefit that a person is eligible for depends on income and savings, and the amount of council tax due. For information on council tax benefit, discounts, reductions and exemptions see Factsheet 414, Council tax.

Social Fund
The Social Fund can help people with low incomes and limited savings to meet certain extra expenses. Loans and community care grants are discretionary. There is no standard amount awarded, and savings above a certain limit may affect the amount you receive. Contact the social fund at your local social security office in person, or by letter or phone.

Benefits that may be paid from the social fund include:

• Cold weather payments - These may be 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 pension credit, income support or income-based jobseeker's allowance with a pensioner or disability premium, or a child under five.
• Funeral payments - 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 pension credit. You can claim up to three months after the funeral. The costs often have to be repaid from the assets of the person who has died. Before making arrangements, check on your entitlement.
• Community care grants - These are available to help people on income support, income-based jobseeker's allowance or pension credit to live at home. They do not have to be repaid. Grants may be awarded for a range of needs - for example, furniture, essential household equipment, minor repairs, or for visiting someone close to you.
• Budgeting loans - These interest-free loans may be available to people who have been on income support, income-based jobseeker's allowance or pension credit (or previously on minimum income guarantee) for at least 26 weeks and need essential items for which they cannot afford to pay outright. The loans must be repaid.
• Crisis loans - These are interest-free loans that are available to anyone in an emergency - for example, because they have lost their purse, or because there has been a fire or flood. People do not need to be receiving benefits to qualify, but all their available income and savings will be taken into account. Crisis loans must be repaid.

Winter fuel payments
If you are aged 60 or over, you will normally qualify for a winter fuel payment to help with the cost of fuel. See Factsheet 431 for current amounts. 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.

NHS benefits
People receiving income support, income-based jobseeker's allowance, pension credit or working tax credit, providing their savings are less than a certain limit (see Factsheet 431), 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.

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. You need to complete an HC1 form and send it to the Health Benefits Division in the prepaid envelope provided. The claim form is available from social security or other relevant offices and NHS hospitals. Some GPs, dentists and opticians may also stock them. Alternatively, request a form from the Health Literature Line or the Health Benefits Division (see 'Useful organisations', below).

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 'Useful organisations').

NHS hearing aids are prescribed by a NHS consultant to anyone needing them on free loan. They are fitted, serviced and supplied with batteries free of charge.

Special notes

Benefits in hospital
Benefits may be affected if either a carer or someone with dementia goes into an NHS hospital for more than a short continuous stay. In this case, it is important to seek advice and inform the local social security office, Jobcentre Plus office or pension centre as appropriate.

Benefits in a care home
For information on benefits for people living in a care home, see Factsheet 468, Paying care home fees.

Your local Alzheimer's Society branch will always be willing to talk to you and offer advice and information to support your needs.

For more information, Dementia Catalogue, our specialist dementia information resource, is available on the website at alzheimers.org.uk/dementiacatalogue.

Useful organisations

Age Concern Cymru
Ty John Pathy
13-14 Neptune Court
Vanguard Way
Cardiff, CF24 5PJ

T 02920 413 555
E enquiries@accymru.org.uk
http://www.accymru.org.uk/en/1.htm

Provides advice and information for older people in Wales.

Age Concern England
Freepost SWB 30375
Ashburton
Devon
TQ13 7ZZ

T 0800 00 99 66 (free helpline every day 8am-7pm)
E use the enquiry form on the website (see below)
W http://www.ace.org.uk/

Provides advice and information (including a factsheet on benefits) for older people in England.

Alzheimer's Society
Devon House
58 St Katharine's Way
London
E1W 1JX
T 020 7423 3500
E info@alzheimers.org.uk
W alzheimers.org.uk

Benefit Enquiry Line (BEL)
Red Rose House
Lancaster Road
Preston
Lancashire
PR1 1HB

T 0800 88 22 00 (free helpline open 8.30am-6.30pm weekdays and 9.00am-1.00pm Saturdays)
   0800 243 544 (textphone)
E BEL-Customer-Services@dwp.gsi.gov.uk
W direct.gov.uk/disability-money

National, free telephone advice and information service on benefits for people with disabilities, their carers and representatives. Note that advisers can send out forms and give advice but they have no access to personal records.

Carers UK
20-25 Glasshouse Yard
London
EC1A 4JT

T 0808 808 7777 (free carers' line, Wednesday and Thursday 10am-12pm and 2pm-4pm)
E info@ukcarers.org
W http://www.carersuk.org/

Provides information and advice to carers about their rights, including benefits, and how to access support.

Citizens Advice Bureau (CAB)
Various locations

W http://www.citizensadvice.org.uk/
   http://www.adviceguide.org.uk/

Your local CAB can provide information and advice in confidence or point you in the right direction. Trained CAB advisers can offer information on benefits in a way that is easy to understand. To find your nearest CAB, look in the phone book, ask at your local library or look on the website (above). Opening times vary.

Counsel and Care
Twyman House
16 Bonny Street
London
NW1 9PG

T 0845 300 7585 (advice line, weekdays 10am-4pm except Wednesdays 10am-1pm)
E  advice@counselandcare.org.uk
W http://www.counselandcare.org.uk/

Provides advice, information and financial support for older people, their families and carers. Advises on benefits.

Department for Work and Pensions

For details of your local office, go to www.dwp.gov.uk/localoffice
For details of various helplines, go to www.dwp.gov.uk/contact/contact_atoz.asp

T 08457 123456
E use the enquiry form on the website (see below)
W http://www.dwp.gov.uk/

The government department responsible for employment and social security. Its website gives details of the various benefits and how to claim them, and claim forms are available to download.

Department of Health
Richmond House
79 Whitehall
London SW1A 2NS

T 020 7210 4850 9.00am-5.00pm
   020 7210 5025 (textphone)
E use the enquiry form on the website (see below)
W http://www.dh.gov.uk/

The government department responsible for health, social care, and the National Health Service (NHS). Provides a range of information and literature, including on help with NHS costs.

Health Benefits Division

T 0845 850 1166

Division of the NHS Prescription Pricing Authority (PPA) responsible for health benefits.

Health Literature Line

T 0800 555 777

Phoneline operated by the Department of Health. Callers can phone to order a range of Department of Health publications.

Help the Aged (England)
207-221 Pentonville Road
London
N1 9UZ

T 020 7278 1114
   0808 800 6565 (seniorline freephone, weekdays 9am-4pm)
E info@helptheaged.org.uk
W http://www.helptheaged.org.uk/

Provides advice and reliable information for older people and their carers on a wide range of topics including benefits. Publishes useful booklets on pensions and benefits.

Help the Aged (Wales)
12 Cathedral Road
Cardiff
CF11 9LJ

T 02920 346 550
E infocymru@helptheaged.org.uk
W http://www.helptheaged.org.uk/

Pensions Service

T 0845 60 60 265 (8.00am-8.00pm weekdays)
   0845 69 69 275 (Welsh language)
   0845 60 60 285 (textphone)
   0845 60 60 295 (Welsh language textphone)
E use the enquiry form on the website (see below)
W http://www.thepensionservice.gov.uk/

The section of the Department for Work and Pensions responsible for the state pension and pension credit. Claim forms are available to download from the website. Alternatively, a member of staff can take claims application over the phone. For callers who do not have English as a first language, interpreters are available.

Factsheet 413

Last updated: April 2008

Last reviewed: April 2008

Reviewed by: Sara Wilcox, Legal and Welfare Officer, Alzheimer's Society, and Linda Gabriel, Solicitor, Thackray Williams