Sources of support and advice

We know how hard it is when you, or someone you care for, lives with a diagnosis of dementia. And if you or someone you love has a diagnosis or is suspected to have dementia, it’s natural to worry about how you’ll cope, now and in the future.  

But you’re not alone. In this booklet, you’ll find information on the legal terms you might encounter when you care for someone with dementia, advice on the financial benefits that you may be able to claim, and details of services and organisations that can support you. 

There may not be a cure for dementia, but there is care – and care can change lives. 

Financial help 

We know that getting a dementia diagnosis can sometimes make you feel overwhelmed. Many people find that planning ahead for the future can help them feel more assured. 

If you have a dementia diagnosis, or are caring for someone who does, you could be entitled to a number of benefits. Use the online Benefits Calculators to see the benefits you, or the person you care for, might be entitled to: gov.uk/benefits-calculators 

Attendance Allowance

What is it? 

A benefit paid by the UK government to people of state pension age or older who are physically and/or 
mentally disabled. 

Am I eligible? 

You can claim it if your ability to keep safe or look after your own personal care is affected by physical and/or mental illness or disability. 

You do not have to have someone caring for you in order to claim. 

How much is it? 

There are two weekly rates: 

  • £60 if you need frequent help or constant supervision either during the day or at night
  • £89.60 if you need help or supervision throughout both day and night, or you’re terminally ill

Claiming Attendance Allowance will not reduce any other benefits you receive, and it is tax-free. The other benefits you get may increase if you get Attendance Allowance. You could get extra Pension Credit, Housing Benefit or Council Tax Reduction if you get Attendance Allowance (Housing Benefit is being replaced by Universal Credit. Please read on for more information). Successful claims can be backdated to when you first applied. 

How do I claim? 

Download a claim form at gov.uk/government/publications/attendance-allowance-claim-form or call 0800 731 0122 Monday to Friday, 8am to 3.30pm. 

Carer’s Allowance

What is it? 

A UK government payment to the carer of someone who receives other benefits, like Attendance Allowance, Personal Independence Payment, or Disability 
Living Allowance. 

Am I eligible? 

You need to: 

  • be 16 years of age or over and spend at least 35 hours a week caring for someone
  • earn no more than £128 a
    week, once allowable expenses are deducted 
  • not be in receipt of certain other benefits, like Incapacity Benefit or a State Pension
  • care for someone who receives certain disability-related benefits, including Personal Independence Payment, Disability Allowance and Attendance Allowance

How much is it? 

You could receive £67.60 a week. Keep in mind that the person being cared for may lose some of their benefits if their carer receives this allowance. Find out more about which benefits could be affected: gov.uk/carers-allowance/effect-on-other-benefits 

How do I claim? 

Call the Carer’s Allowance Unit on 0800 731 0297 between 10am and 2pm, Monday to Friday. 

Make a claim online at gov.uk/carers-allowance/how-to-claim 

Council Tax reduction

What is it? 

Council Tax is a fee local authorities charge to people living in residential properties to help meet the cost of local services. Certain reductions on the charge are available for some people. 

Am I eligible? 

If a person with dementia is entitled to receive either Attendance Allowance, Personal Independence Payment, or Disability Living Allowance at the middle or higher rate, they should be exempt from paying Council Tax in England, Wales and Scotland. 

Also, some carers do not have to pay Council Tax if they are living with and caring for a person with dementia who gets the higher rate of Attendance Allowance or Personal Independence Payment. 

How much is it? 

If a person with dementia lives in a private home with someone else, the Council Tax should be reduced by 25%. If the person with dementia lives alone, they are exempt from paying Council Tax. 

How do I apply? 

Call your local Council Tax department and ask for a form for ‘Council Tax discount because of mental impairment’. 

Find out more at gov.uk/apply-council-tax-reduction 

Disability Premium

What is it? 

Disability Premium is a UK government benefit which is added to Income Support or income-based Jobseeker’s Allowance if you qualify for it. 

Am I eligible? 

You or your partner must be under state pension age and be receiving other benefits like Disability Living Allowance, Personal Independence Payment, Armed Forces Independence Payment, Working Tax Credit with a disability element, Attendance Allowance, War Pensioners’ Mobility Supplement, or Incapacity Benefit. 

How much is it? 

You could receive £35.10 a week if you are single and £50.05 a week if you are part of a couple. 

How do I claim? 

You don’t have to claim Disability Premium as it’s automatically added to your Income Support if you’re eligible. Call your local Jobcentre Plus if it has not been paid. To find details of your nearest Jobcentre Plus, visit find-your-nearest-jobcentre.dwp.gov.uk 

Find out more at gov.uk/disability-premiums-income-support

Employment and Support Allowance (ESA) and Universal Credit

What is it? 

ESA is a UK government benefit paid to people whose illness or disability affects their ability to work. It is being replaced by a benefit called Universal Credit. 

Am I eligible? 

You need to be: 

  • under State Pension age
  • not in receipt of Statutory Sick Pay or Statutory Maternity Pay
  • not in receipt of Jobseeker’s Allowance

You might be transferred from Incapacity Benefit to ESA and won’t be expected to return to work. 

How much is it? 

You’ll get a pre-assessment rate of between £59.20 and £74.70 when you first claim. Then, after 13 weeks, you can receive up to £114.10 a week. 

How do I claim? 

Call the Universal Credit helpline on 0800 328 5644 between 8am and 6pm, Monday to Friday. 

Find out more at gov.uk/employment-support-allowance 

ESA is being replaced by a benefit called Universal Credit. Universal Credit is being introduced in stages throughout the UK. Everyone who claims one or more of the six benefits that will be replaced by Universal Credit will be moved across by September 2024. To find out if you are eligible to claim Universal Credit or ESA, please visit gov.uk/universal-credit 

Personal Independence Payment (PIP)

What is it? 

A benefit paid by the UK government which helps with some of the extra costs caused by long-term illness or a disability. 

Am I eligible? 

You must be aged 16 or over and usually have not reached State Pension age to claim. You must 
also have a health condition or disability where you have difficulties with daily living or getting around (or both). 

PIP is tax-free and you can get it whether you are in or out of work. 

How much is it? 

You could get between £23.70 and £152.15 a week, depending on how your condition affects you. 

How do I claim? 

Call the Department of Work and Pensions PIP claims on 0800 917 2222 between 8am and 5pm, Monday to Friday. 

Find out more at gov.uk/pip 

Personal health budget

What is it? 

A personal health budget is an amount of money to support your health and wellbeing needs, which is planned and agreed between you (or someone who represents you), and your local NHS team. It allows you to manage your healthcare and support needs such as treatments, equipment and personal care, in a way that suits you. 

Am I eligible? 

The right to have a personal health budget only applies to adults currently in receipt of NHS Continuing Healthcare Funding, but local NHS organisations are free to offer personal health budgets to other people on a voluntary basis if they think an individual will benefit from it. 

How do I apply? 

Talk to the local NHS team that helps you most often with your care.

Personal budget

What is it? 

Local authorities have a legal responsibility to ensure that your care needs are met. A personal budget is an amount of money from a local authority to help people to manage their care in a way that suits them. If they agree to pay for some or all of your care needs, the local authority must also offer a choice of how to meet your needs. The aim of personal budgets is to give people greater choice over the care and support they receive. 

Am I eligible? 

A person must have been assessed as requiring services in order to receive a personal budget, and the payment must be used to purchase the services that the person needs. Payments may be made to the carers and to people with dementia. 

How do I apply? 

You can request information about a personal budget by contacting your Social Services department and asking for a Needs Assessment or a Carer’s Assessment. 

How are these budgets paid? 

Once a care and support plan has been put in place, it can be managed in different ways: 

  • no money changes hands as the NHS team or local authority arranges the agreed care and support
  • a different organisation or trust holds the money for the individual and supports them to decide what they need
  • the individual receives a direct payment and manages the services themselves

What is the difference between a personal health budget and a personal budget? 

A personal budget is for your social care needs, while a personal health budget is for your NHS healthcare needs. 

Can I join up my personal health budget and my personal budget? 

Personal health budgets and personal budgets may be joined together into one package of care. 

Paying for care

Provision of care in the UK is the joint responsibility of the NHS, which provides healthcare, and the local authority Social Services which provides social and personal care. Services that the NHS provides are mostly free. But you may have to pay for all or some of the services that are arranged by your local authority Social Services, depending on your income and the amount of your savings. 

Any decision as to whose responsibility it is to provide care can have significant financial consequences. A booklet produced by the Alzheimer’s Society, called ‘When does the NHS pay for care?’ offers guidance on eligibility. It explains what NHS continuing healthcare is, how you might be able to get it, and what to do if your request is turned down.  Read ‘When does the NHS pay for care?’ here: alzheimers.org.uk/when-does-nhs-pay-care 

For more information on free care outside of hospital that is arranged and funded by the NHS, search NHS continuing healthcare at nhs.uk 

Legal issues

Power of Attorney

If you’ve been diagnosed with dementia, you might want to think about choosing someone to make health, welfare and/or financial decisions for you in the future when you may not have the capacity to make them for yourself. The person you choose is called an attorney and is appointed by a formal document called a Lasting Power of Attorney (LPA) 

There are two types of LPA: 

  • a health and welfare LPA – for decisions about health and personal welfare, such as where you might live, your day-to-day care or medical treatment
  • a property and affairs LPA – for decisions about finances, such as selling your house or managing your bank account

Contact your solicitor to make an LPA or use a special form from the Office of the Public Guardian. You can call the Office of the Public Guardian on 0300 456 0300, between 9.30am and 5pm, Monday, Tuesday, Thursday, Friday, and between 10am and 5pm on Wednesdays. 

You can also fill in this form online. Visit gov.uk/power-of-attorney/make-lasting-power  

Please see Dementia UK’s leaflet on making an LPA here: dementiauk.org/lasting-power. 

If you don’t have a solicitor and have questions about Lasting Power of Attorney, contact Allied Services Trust, a charity providing education, assistance and support to help individuals prepare for possible incapacity. Call Allied Services Trust on 01590 644073. Visit their website: alliedservicestrust.org/ 

An LPA is only valid in England and Wales. People in Northern Ireland can contact the Office of Care and Protection for advice on 0300 200 7812 (or visit nidirect.gov.uk/contacts/contacts-az/office-care-and-protection). 

People in Scotland can contact the Office of the Public Guardian (Scotland) on 01324 678398 (publicguardian-scotland.gov.uk). 

Enduring Power of Attorney (EPA)

EPAs have been replaced by Lasting Power of Attorneys. However, if you made and signed an EPA before 1st October 2007, it’s still valid. An EPA only covers decisions about your property and financial affairs. That means an attorney does not have power under an EPA to make decisions about your health and welfare. 

While you are able to make your own decisions, your attorney can use an EPA to help manage your finances without registering it with the Office of the Public Guardian. When you become unable to make your own decisions relating to financial and property matters, the EPA must be registered with the Office of the Public Guardian before your attorney can take any further action on your behalf. 

Call the Office of the Public Guardian on 0300 456 0300, between 9.30am and 5pm, Monday, Tuesday, Thursday, Friday and between 10am and 5pm on Wednesdays. 

Find out more at gov.uk/government/publications/register-an-enduring-power-of-attorney 

Deputyship under the Court of Protection

The Court of Protection might be able to help you if you’re caring for someone with dementia. It deals with issues relating to people who lack capacity to make decisions for themselves. 

Under the Mental Capacity Act, the court has the power to make: 

  • decisions about the personal welfare or property and financial affairs of people who lack the capacity to make such decisions themselves
  • declarations about a person’s capacity tomake a decision, if this can’t be resolved informally
  • decisions about medical treatment around providing, withdrawing or withholding treatment to someone who ‘lacks capacity’

The court can appoint a ‘deputy’ to take control of someone’s affairs: 

  • in the absence of an EPA or LPA
  • if they believe someone is in immediate danger or at risk and another person needs to act on their behalf

Call The Court of Protection on 0300 456 4600 between 9.30am and 4.30 pm, Monday to Friday. 

To find out more about becoming a deputy or what the court does, please visit gov.uk/oneoff-decision-personal-welfare 

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