After a diagnosis of dementia, you may have questions about how to pay for care and support and how to ensure your wishes and preferences can be respected later on when you may be unable to make decisions. This page covers some financial and legal matters and signposts to further resources.
What support could I get?
Care and support can be costly if you have dementia, particularly in the later stages, and if you have early-onset dementia you may have left your job and experienced a drop in income. While there are no benefits specifically for people with dementia, you may be entitled to financial support due to disability or low income.
Disability-Related Support
A diagnosis of dementia may entitle you to disability-related financial support, depending on your symptoms and what activities you can still do. The main benefits available are:
- Personal Independence Payment – available for people aged 16 to the pension age
- Attendance Allowance – available to people over the pension age
- Employment and Support Allowance – available to people with a limited capacity for work due to illness or disability
Benefits paid as a weekly amount and can make a difference if you struggle to pay for equipment or personal care. For more information on how to apply, read GOV.UK’s information on personal independence payment, employment and support allowance and attendance allowance respectively.
As well as benefits, you may be entitled to a disabled facilities grant to cover the cost of adapting your home for disability. Disabled facilities grants are means-tested and are intended to help you stay in your own home. For more information on the disabled facilities grants, click here. Additionally, you may be entitled to VAT relief on home adaption products and their installation or maintenance. For more information on VAT relief, click here.
Income-related support
Benefits
The main benefits available if you are on a low income are:
- Universal credit – this is available to people of working age
- Pension credit – this is available if you are over the state pension age but do not receive enough from your pension
To apply, visit the GOV.UK website for pension
Housing and heating costs
Housing benefit is the main form of housing-related financial support and is offered to low-income tenants to help pay for the rent. For information on how to apply, click here.
If you are a homeowner, you may be eligible for Support for Mortgage Interest, which is a loan paid to help you keep up with interest payments. It does not cover the cost of the mortgage itself.
If you are in receipt of benefits such as income support or pension credit, you will qualify for Cold Weather Payment, a special payment that is made if the temperature drops below a certain level for seven consecutive days.
NHS costs
Depending on what income-related benefits you receive, you may be eligible for help with NHS costs, which can include:
- Free prescriptions
- Help with travel to and from hospital
- Free sight tests
- Free dental checkups
To see whether you are eligible, click here.
Age-related support
If you are above the state pension age, you will receive winter fuel payment automatically and regardless of income, providing you meet other eligibility criteria.
If you claim a pension but it is not enough to live on, or you are not able to claim a pension at all, you might be eligible for pension credit.
Finally, if you have severe visual impairment or are over the age of 75, you will be eligible for a free or discounted TV license.
Further Financial Resources
- Turn2Us – offers a free tool to check your benefit entitlement as well as search for charitable grants you might be able to access.
- Citizens Advice – a national organiation which provides free advice on finances and legal issues, with local advisers in every part of the country.
Setting out Health Care Wishes
For some people diagnosed with dementia, coming to terms with an uncertain future is one of the hardest things to have to face. Making decisions in advance, about your healthcare and life-style choices, whilst you’re still able to, is very important so that your wishes and preferences can be respected later on.
The two main mechanisms for ensuring this are known as advance statements and advance decisions. They are similar but are not the same thing. A person can make both.
What is an advanced statement?
An ‘advance statement’ expresses a general preference about a person’s future care. For example:
- Where a person would like to live.
- The kind of care they wish to receive.
- Food and drink preferences (e.g. a life-long vegetarian).
- Preferences related to their religion or cultural background.
- A list of people (partner, family, friends etc.) whose opinions matter.
The process of making an advance statement can help to start a conversation about what future care someone does and doesn’t want. It can be made verbally or written down. By making a written record, there is less likelihood of misunderstanding.
An advance statement is not a legal document and health and medical professionals do not have to adhere to its directions. However, they do have to have good reason not to follow it and should where at all possible, take into account someone’s prior wishes.
For more information on advance statements, visit the NHS website.
What is an advanced decision?
An ‘advanced decision’ is a record of a person’s wish to refuse life-sustaining treatment. Examples of life-sustaining treatment include: being given food and drink by tube if it is no longer possible to take it by mouth; organ transplant; chemotherapy or other cancer treatments; using a machine to help you breathe; restarting your heart using CPR (cardiopulmonary resuscitation). An advanced decision cannot be used to refuse basic care to keep you comfortable such as pain relief, taking food and drink by mouth etc. or, to demand a specific type of treatment that may be deemed clinically unnecessary or inappropriate.
Making an advance decision is a specialised process and must be done properly to be ‘valid’ and legal. The Mental Capacity Act 2005 has details about determining whether or not someone has the mental capacity to make an advanced decision. They must also be very carefully written to ensure they are ‘applicable’ to a specific type of medical circumstance. If the wording is unclear or vague, a doctor or medical professional may not follow it. For more information on making sure an advance decision is valid, see the “Further resources” section below.
Advance decisions cannot be used to insist on, or refuse, treatments that are essential for life. This is not the same as advanced refusal of cardiopulmonary resuscitation (CPR) for cardiac arrest (heart attack).
Further Legal Resources
- Alzheimer’s Society: advice on advanced statements and advance decisions – https://www.alzheimers.org.uk/get-support/legal-financial/advance-decision-living-wills
- Oxfordshire County Council: Making decisions when you can’t – https://www.oxfordshire.gov.uk/residents/social-and-health-care/adult-social-care/legal-and-money-issues/making-decisions
- Mind: Advance decisions – https://www.mind.org.uk/information-support/legal-rights/mental-capacity-act-2005/advance-decisions/#.XVqa9OhKjIU
- Mental Capacity Act 2005 – http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf
- NHS: Information on what makes an advance decision valid and what it can cover – https://www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/
