If the person you are caring for has received a terminal diagnosis, or they are at the end of their life, dealing with the costs can cause money worries and additional stress at a time when you are already dealing with so much.
Concerns about costs can often be about paying for arrangements after they have gone but it can also include the cost of caring, the financial impact of giving up work to support the person you care for. Thinking about these practical issues means you can put plans in place to access support when you need it and safeguard your finances. Financial support is available to help carers and those who are at the end of their life, and our guide will walk you through what to consider step by step.
Applying for benefits
If the person you are caring for has a terminal diagnosis or they are at end of life, they may be entitled to benefits. If the person you are caring for is already claiming certain benefits when they receive a terminal diagnosis, the amount might be able to be increased according to what is called the ‘Special Rules’ system. These special rules apply to those people who are expected to live less than 12 months (this period increased from 6 months to 12 months in April 2023).
If the person you are caring for is not receiving benefits, they can apply for benefits using the fast track process. In practice, this means the application process is simplified, and will not need to undergo a medical assessment, meaning they will receive their benefits more quickly. If you are making a claim for benefits under the special rules, your claim will need to be supported by an SR1 form which is a form completed by your GP, consultant or specialist medical team that explains their diagnosis.
If the person you are caring for has received a terminal diagnosis and they live beyond this time, their benefits will continue and there are no financial penalties to worry about. If you are unsure about which benefits you could apply for, our article on Financial Benefits will help you.
If the person you are caring for has a Life Insurance policy with critical illness cover, they will be entitled to the pay out from the insurance cover. It may therefore be worth contacting the insurers to find out what they will be eligible for.
Financial support you can apply for as a carer
If you are caring for someone at the end of their life and they are receiving a disability benefit, you may be eligible to apply for Carer’s Allowance. For more details, see our article on Carers Allowance.
Other forms of support
When balancing caring for someone and working, the recent changes to the Carer's Leave Act mean you will be entitled to up to one week of carers leave each year. By sharing your caring situation with your employer you will be able to access well being support as well as be able apply for flexible working arrangements.
If you require extra support with the caring role, you or your GP can apply for a Needs Assessment and/or a Carer’s Assessment that can make sure the right provisions, including any extra financial support you might be entitled to, is made.
Financial support after someone has died
When thinking about current finances when supporting someone who is receiving end of life care, you may be worried about the costs associated with arrangements after they have died. Although some of these costs can be considerable there is financial help available if you need it.
Here are some financial support schemes you may be entitles to access:
If you are in a partnership with the person you are caring for, have children together or you are a kinship carer, and you are under State Pension age, you may be entitled to the Bereavement Support Payment after their death.
Help with funeral costs in the form of a Funeral Expenses Payment is also available if you meet certain criteria, like claiming specific benefits. You must apply within 6 months of the funeral taking place. Be aware that if you receive any money from the estate after the person you are caring for has died, you may be asked to pay back money from the Funeral Expenses Payment in installments via the Funeral Payment scheme.
If you have been receiving Carer’s Allowance this will automatically continue for 8 weeks after the death of the person you have been caring for, unless you are 65 years or over when you will be entitled to receive this indefinitely. Other means-tested benefits might also continue for up to eight weeks, and in some circumstances Universal Credit payments can continue after the person you have been caring for has died.
If the person you are caring for was paying into a life insurance policy or pension scheme, it’s important that you contact the providers after their death. If you have been nominated as a beneficiary, it might be that you will be eligible to receive a lump sum payment, though the details will depend on the type of policy or insurance scheme and your relationship.
If the person you are caring for has been paying into a state pension, it may be possible to inherit that or increase your own state pension after they die if they are your spouse or civil partner.
It can seem daunting to find your way through the rules, criteria and application processes involved in some of these cases, so you might ask a trusted friend or family member to go through these steps with you. You can also seek advice through organisations like Turn2Us and the Citizens Advice Bureau.
Continuing support for carers
When caring for someone who is had received a terminal diagnosis or is at end of life, understanding you are not alone is important. Being supported by a wider network of friends and family, alongside professional teams will help you to feel supported and more resilient during such a challenging time. There are also peer support groups for carers where you can connect with others who will understand what you are going through. Our articles on managing difficult emotions, caring for someone at the end of life and understanding grief might be useful resources, and we offer a wide range of services available online and in-person during the time you are supporting the person you are caring for, and beyond.
Our Carers First online group support Moving On, Staying Together (MOST) offers a warm and welcoming online space to connect with other former carers during our monthly virtual gatherings.