Benefits and Finances

Where to start

If you've just had a diagnosis, or things have recently got harder, three quick jobs are worth doing first:

1. Check your benefits. Most people with dementia are entitled to at least one disability benefit. Many carers are entitled to Carer's Allowance or a carer element of Universal Credit.
2. Apply for Council Tax disregard. If the person diagnosed is on a qualifying benefit, their Council Tax bill may be reduced by 25% or removed altogether. See Council Tax below.
3. Sort out Lasting Power of Attorney. While capacity is not in doubt, register LPAs for both finance and health. It is much harder and more expensive to do anything once capacity is lost. Planning for the Future guide

A free benefits check whether over the phone with Age UK, online at turn2us.org.uk, or in person at Citizens Advice is the single most useful hour you can spend on this.

The main benefits

The headline benefits fall into two groups: disability benefits, for the person with dementia, and carers' benefits, for the person looking after them. Most are not means-tested, savings and income don't come into it.

Attendance Allowance (AA)

For people over state pension age who need help looking after themselves because of illness or disability. Paid at two weekly rates, depending on whether help is needed mainly in the day or also at night. It is not affected by your savings, your income or whether anyone actually provides care. What you spend it on is up to you.

Personal Independence Payment (PIP)

For people under state pension age. It has two parts, a daily living component and a mobility component, each paid at a lower or enhanced rate. Like AA, it is not means-tested. If someone is already on PIP when they reach state pension age, it continues.

Carer's Allowance

Paid to people who give at least 35 hours a week of unpaid care to someone receiving a qualifying disability benefit (AA, the daily living part of PIP, or certain others). There is a weekly earnings limit, and it is treated as taxable income, so it's worth a quick chat with Citizens Advice before you claim to make sure it won't reduce other benefits such as Pension Credit.

Carer's element of Universal Credit

Working-age carers on a low income may be entitled to an extra carer amount as part of Universal Credit, even if they don't qualify for Carer's Allowance itself.

Pension Credit

A top-up to weekly income for people over state pension age on a low income. It is notoriously under-claimed and opens doors to other help, including housing costs, Council Tax help and (for over-75s) a free TV licence. Always worth checking, even if you think you won't qualify.

Other benefits worth looking at

• Housing Benefit or the housing element of Universal Credit
• NHS Low Income Scheme, help with dental, optical and travel costs
• Warm Home Discount, Winter Fuel Payment and Cold Weather Payments
• Water bill social tariffs (ask your water company)
• Reduced-cost or free TV licence (for over-75s receiving Pension Credit)

Filling in the forms

The forms for AA and PIP can look brutal. They ask the same thing in slightly different ways, and they are designed to make you think about the worst day, not an average one. A few things that help:

• Describe the help needed, not the diagnosis. 'Can't be left alone with the cooker on' says more than 'Has Alzheimer's'
• Include the emotional and mental bits. Prompts and reminders, reassurance at night, supervision for safety, needing someone there to stop things going wrong, these all count.
• Describe a bad day, and how often bad days happen. Don't average out.
• Think about time. How much longer everyday tasks take than they used to. How many prompts are needed.
• Use the extra-pages box. Attach extra sheets if you need more space. Don't squash your story to fit.
• Keep a copy of everything you send. Always.

Age UK publishes excellent line-by-line guides to the AA and PIP forms, hugely worth reading before you start. Citizens Advice, Suffolk Family Carers and local carer support workers like us can help you fill them in together.

Council Tax and other household help

Severe Mental Impairment disregard

Someone with dementia who has been medically certified as 'severely mentally impaired' (the legal term on the form) and receives a qualifying benefit is disregarded for Council Tax. In practice:

• If they live alone, the bill can be removed entirely.
• If they live with one other adult, the bill is usually reduced by 25%.
• It can often be backdated to the date of diagnosis, in some cases several years.

In Halesworth, applications go through East Suffolk Council. The form has a medical section that your GP or memory clinic can sign. Don't be put off by the wording of the form, it is simply how the law is written.

Blue Badge

People with dementia who have significant trouble walking, or who experience overwhelming distress in busy unfamiliar places, may qualify for a Blue Badge. Apply online at gov.uk/apply-blue-badge.

Disabled Facilities Grant

A means-tested grant from your local council to help pay for home adaptations such as grab rails, a walk-in shower, a stair lift or a downstairs loo. An occupational therapist will assess what's needed.

Help with energy, water and broadband

Most energy suppliers run a Priority Services Register for older and vulnerable customers, free to join, and it means you get advance notice of outages, help reading meters and a nominated contact. Water suppliers and broadband providers have similar schemes and social tariffs. A quick phone call can save a surprising amount of money.

Paying for care at home

If someone needs help at home, with washing, dressing, medication, meals, the first step is a free needs assessment from Suffolk County Council. This is separate from the carer's assessment (see our Know Your Rights page from the Information gallery).

After that, the council does a financial assessment. In broad terms in England:

• If someone has capital (savings, investments, second properties) above the upper limit, they usually pay the full cost of their care themselves (self-funding)
• Below the lower limit, the council pays for the care, topped up by a contribution from income.
• Between the two limits, there is a sliding contribution.

The value of the main home is not counted when someone is receiving care at home. It is only considered if they move into a care home permanently.

NHS Continuing Healthcare (CHC)

If someone's needs are mainly health needs rather than social care needs, their care can be fully funded by the NHS, at home or in a care home. CHC is not means-tested. Many families are never told about it, or are put off by informal comments that they won't qualify. You have the right to ask for a checklist assessment; if you are refused CHC, you can challenge the decision.

Direct Payments

If the council has agreed to fund care, you can ask for a Direct Payment and arrange the care yourself, for example employing a carer you already trust, or mixing formal and family support, rather than accepting the council's chosen provider.

Paying for a care home

Care home fees are one of the most anxious subjects in families affected by dementia. A few key points that are worth knowing early.

The financial assessment

When someone moves permanently into a care home, the council looks at their income and capital. The value of the person's home is usually counted, unless a partner, a close relative over 60, or a dependent child still lives there.

Self-funding

If someone pays their own fees, they should still have a needs assessment and a best-interests decision about which home suits them. They can also ask for the council's advice on deferred payments (see below).

Deferred Payment Agreements

A scheme run by the council that lets someone use the value of their home to pay for care, without having to sell it during their lifetime. The council lends the fees; the loan is repaid later, usually from the eventual sale of the house. It can protect a home from being sold under pressure, but interest accrues, so it's worth independent financial advice.

Top-up fees

If the family chooses a home that costs more than the council rate, a third party (usually a family member) may need to pay a top-up. Get the figures in writing, and understand how they will rise each year, before agreeing.

NHS-funded nursing care

If someone needs nursing care in a home, the NHS pays a fixed weekly contribution called NHS-funded nursing care, separate from CHC.

Managing someone else's money

As dementia progresses, someone may need help running their finances, first a little, then a lot. A few tools to know about.

A third-party mandate on a bank account

While someone still has capacity, they can ask their bank to let a named person operate their account alongside them. It is quick, free and useful for paying bills. It stops working if the person loses capacity.

Lasting Power of Attorney (property and financial affairs)

The most important tool by far. It lets the person choose who will manage their finances if, in the future, they cannot. It must be made while they still have capacity and registered with the Office of the Public Guardian. See our Planning for the Future guide

Deputyship

If someone has already lost capacity and there is no LPA, a family member can apply to the Court of Protection to become their deputy. It is slower, more expensive and more paperwork than an LPA, one of the reasons everyone is gently nagged to set up an LPA early.

The DWP appointee

If someone on benefits can no longer manage them, the Department for Work and Pensions can appoint someone (often a family member) to receive and manage their benefits on their behalf. It only covers benefits, not the rest of their money.

Everyday practical tips

• Set up direct debits for all regular bills.
• Keep a monthly budget sheet, simple paper or a spreadsheet is fine.
• Keep receipts and a short note of any larger cash withdrawals. Attorneys and deputies must keep records.
• Don't mix your money with theirs. Separate accounts, separate records.
• Tell the person's bank you are an attorney once the LPA is registered, most banks have a dedicated power-of-attorney team.

Scams and financial safety

People with dementia are sadly a frequent target of scams, by phone, post, email, doorstep and online. A few simple steps lower the risk a lot.

• Register free with the Telephone Preference Service and the Mailing Preference Service to reduce cold calls and junk mail.
• A call-blocker handset, or a trusted-contacts feature on a smartphone, filters out unknown numbers.
• Cards with daily spending limits, or a prepaid card topped up weekly, can cap the damage if a card is misused.
• Ask the bank about their vulnerable-customers team. Many will now flag unusual transactions or hold payments for review.
• Never let a doorstep trader pressure you into work on the house. Trading Standards can help; in an ongoing incident, ring 999.
• Report scams to Action Fraud even if no money was lost.

Being scammed is not a sign of stupidity. Scammers are professionals, and dementia affects exactly the parts of thinking that help us spot a lie. Reassure the person, report it, and focus on preventing the next one.

This page offers general information, not financial or legal advice. Benefit rules and rates change, please check the latest details on gov.uk or ring a helpline such as Age UK or Citizens Advice before acting on anything important.