Finance and young onset dementia

Some people with young onset dementia continue to work with adjustments to their workplace or role, but others may stop work sooner than they had planned.

You may choose to reduce your hours, change your role or stop work completely if you care for someone who has young onset dementia.

Dementia is classified in England, Wales and Scotland as a disability in the Equality Act 2010, and in the Disability Discrimination Act 1995 in Northern Ireland. This means a person with a dementia diagnosis has legal protection from discrimination at work. Read more about this in our leaflet on employment and young onset dementia.

Some people with young onset dementia choose to take early retirement and start drawing their pension. But accessing your pension early may affect your income or what benefits you are entitled to.

Seek professional advice when weighing up your pension options. For more information, visit gov.uk/early-retirement-pension/benefits, or to find an independent pensions adviser, visit unbiased.co.uk or thepfs.org/yourmoney/find-an-adviser

If you have to stop work before you reach the State Pension age, you can protect your pension entitlement with National Insurance credits. Visit gov.uk/national-insurance-credits

If you have a diagnosis of young onset dementia or care for someone who does, you may be eligible for benefits, particularly if you are no longer able to work. These include:

• Access to Work grant
• Adult Disability Payment (Scotland)
• Carer’s Allowance
• Council Tax reduction
• Employment and Support Allowance
• NHS continuing healthcare funding (CHC)
• Personal Health Budget
• Personal Independence Payment
• Statutory Sick Pay
• Universal Credit

Use a benefits calculator to find out which benefits you or the person you support might be entitled to: visit gov.uk/ benefits-calculators

Appointeeship
If you care for someone who needs assistance with applying for or managing benefits, you can apply to the Department of Work and Pensions to become their appointee. This allows you to manage their benefits for them. To find out more visit gov.uk/ become-appointee-for-someone-claiming-benefits

It can be difficult to manage your finances, especially if your income suddenly drops. In addition, dementia sometimes changes the way people behave with money – for example, they may gamble, spend impulsively, purchase items that are not needed or become vulnerable to scams.

These suggestions may help you:

• Set up standing orders or direct debits for all your regular bills
• Prepaid cards can be a good choice if you want to keep an eye on a person’s spending
• Joint bank accounts can be useful but be aware that each person is liable for the other’s debts
• Set a withdrawal limit on your bank accounts and reduce your credit limit on bank and credit cards
• If you have multiple bank accounts, consider closing some so they are easier to manage
• Keep a record of your income and regular outgoings to limit overspending
• Consider signing up for online banking – it can make it easier to keep track of your finances
• Keeping your money separate in personal accounts can be beneficial if one of you applies for a means-tested Personal Budget or requires paid care

If you do not feel able to manage your finances, ask someone you trust to help or consider getting professional advice as soon as possible. Do not ignore letters if you get into difficulties. Seek advice from a qualified financial adviser who is regulated and authorised by the Financial Conduct Authority: visit fca.org.uk

Lasting power of attorney
Lasting power of attorney is a legal process where you appoint someone (known as your ‘attorney’) to make decisions for you if you lack the mental capacity to do so yourself.

There are two types, and you can make either or both:

• health and welfare – for decisions about health and personal welfare
• property and affairs – for decisions about finances

After a diagnosis of young onset dementia, it is advisable to make an LPA as soon as possible.

You can set up LPA yourself using a form from the Office of the Public Guardian (OPG): visit gov.uk/ power-of-attorney/make-lasting-power. Alternatively, you can ask a solicitor to set it up for you.

Deputyship under the Court of Protection
If you care for someone with dementia who lacks the mental capacity to make decisions for themselves, but you don’t have LPA, the Court of Protection may appoint you as the person’s ‘deputy’ and give you permission to make one-off or ongoing decisions on their behalf.

You can be a deputy for matters relating to:

• property and affairs
• personal welfare

To find out more about what the Court of Protection does, visit gov.uk/courts-tribunals/court-of-protection. For information about becoming a deputy, visit gov.uk/become-deputy

A Will ensures that your money and possessions are left to the people or charities of your choosing after your death, and every adult should have one. If you don’t have a Will and have been diagnosed with dementia, you should make one as soon as possible.

Although you can write your own Will, it is recommended that you seek legal advice from a solicitor or Will writer to make sure your wishes are interpreted in the way you want.

If you already have a Will and have been diagnosed with dementia, it is advisable to review it to make sure it reflects the changes in your circumstances and your current wishes.

For more information on making a Will, visit dementiauk.org/ freewill or gov.uk/make-will. To find a solicitor, visit solicitors. lawsociety.org.uk

Admiral Nurse Dementia Helpline
0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm)
helpline@dementiauk.org

Admiral Nurse Closer to Home clinics – pre-booked appointments by phone or video call
dementiauk.org/get-support/closer-to-home

Dementia UK information leaflet on Employment and young onset dementia
dementiauk.org/employment-and-young-onset-dementia

Dementia UK information leaflet on Lasting power of attorney
dementiauk.org/lasting-power-of-attorney

Dementia UK information leaflet on Capacity and decision-making
dementiauk.org/capacity-decision-making

Acas – free, impartial advice on workplace rights, rules and best practice
acas.org.uk

Benefits and grants
gov.uk/browse/benefits (England and Wales)
mygov.scot/browse/benefits (Scotland)
nidirect.gov.uk/information-and-services/benefits-and-money/benefits-and-financial-support (Northern Ireland)

Citizens Advice
citizensadvice.org.uk

Money Helper – free impartial advice on benefits, debt, and finances
moneyhelper.org.uk/en

Office of the Public Guardian – information on lasting power of attorney
gov.uk/government/ organisations/office-of-the-public-guardian

Pathways Through Dementia – free legal and financial information for people living with dementia
pathwaysthroughdementia.org

Solicitors for the Elderly – legal advice for vulnerable people including people with dementia and their families
sfe.legal

The Law Society – database of independent professional
solicitorssolicitors.lawsociety.org.uk