Advice for carers and people with dementia on the cost of living crisis

The rises in energy bills in April and October mean that many families affected by dementia are increasingly worried about finances and how they will manage to pay their bills this winter. The general increase in the cost of living has compounded these worries. 

We understand that this is a challenging time for families affected by dementia, who are already in a financially vulnerable position. Worries around household finances can be exacerbated if the person with dementia has to leave their job – or if a family member has to reduce their hours or stop work because of their caring responsibilities.  

Families may also face processing delays and inconsistencies in decision-making when applying for financial support for day-to-day living, such as Attendance Allowance, Personal Independent Payments and Carer’s Allowance.   

Many families are struggling to meet the additional costs of caring for a person with dementia. Specific needs – such as being housebound, altered sleep patterns, incontinence and vulnerability to feeling the cold – mean families often have to increase energy consumption in order to maintain the health, safety and wellbeing of their loved ones. 

As the colder months are upon us, we have seen a surge in calls to the Helpline from families who are worried about how they will manage to keep their family member warm, nourished and safe this winter.    

As a result, we have compiled some advice to assist families at this time. 

2) Talk to customer vulnerability teams and/or ask to be put on the Priority Services Register  

Many utility providers have Customer Vulnerability Teams who can register the person with dementia and their entire household as requiring support to navigate any future changes. They can also talk through any options available to support you. To find out more, please see ofgem.gov.uk/get-help-your-supplier-priority-services-register 

Preparing for the call:  

• Have a pen and paper handy 
• Have your bills and account details ready, and any supporting documents like LPAs  
• Try to arrange some uninterrupted time for the conversation 
• Think about what style of communication works best for you when talking to the supplier – for example, large text format on letters, documents, the screen or live chat may be useful, especially for people with types of dementia that affect visual processing. On some webpages, you can amend text size yourself – but do ask the customer service representative if you need help  
• Have an idea of what outcome you want from the conversation (eg the supplier recording that you have dementia or are a carer for someone with the diagnosis, and clear signposting to support services to allow you to manage your bills more easily) 
• Ask to be put on the Priority Services Register with your energy supplier. The register is for anyone classed as vulnerable – which may include people with dementia – and will allow you to access extra support, such as help managing payments and priority services in an emergency (eg if there is a power cut) 
• Ask the provider about the benefits of having a smart meter installed. This can be helpful for people with dementia as they don’t have to remember to take meter readings and will get a more accurate bill  
• You could also ask about a water meter – if you have fewer people in the house than bedrooms, a water meter tends to be more cost-effective than unmetered water 
• If the call is proving overwhelming, ask if the supplier can call you back to avoid adding to your phone bill if they don’t have a freephone line  
• Ask the supplier to send a summary email or letter of what has been agreed – this is especially beneficial for anyone who is hard of hearing or has difficulty processing information due to cognitive issues  

3) Access support  

We know that families affected by dementia often face significant mental health issues like anxiety and depression. Worries about managing the cost-of-living crisis can increase the strain.  

Our Admiral Nurse Dementia Helpline can offer support with mental health issues and suggest coping strategies. The Helpline can also provide an overview of dementia-specific support groups or local agencies in your area, such as the Citizens Advice Bureau.    

Money expert Martin Lewis has produced a guide to what to do if you’re struggling to pay your energy bills – please see moneysavingexpert.com/utilities/how-to-get-help-if-you-re-struggling-with-your-energy-bills-/   

For general support around managing finances and what to do if you are having difficulty making payments, please see:  

• citizensadvice.org.uk/consumer/energy/energy-supply/get-help-paying-your-bills/struggling-to-pay-your-energy-bills/ 
• moneyhelper.org.uk

4) Find out about grants and benefits 

To find out about the Energy Bills Support Scheme and how you can get help this winter, please visit gov.uk/guidance/getting-the-energy-bills-support-scheme-discount 

If you are in receipt of certain benefits or tax credit, you may be eligible for the Cost of Living Payment. For more information, please visit  gov.uk/guidance/cost-of-living-payment 

You may qualify for other one-off payments to help with energy bills – such as the Winter Fuel Payment, which is automatically available to anyone who was born on or before 26th September 1955. For further information, please visit gov.uk/winter-fuel-payment/how-to-claim 

You may be eligible for support through a charitable grant, depending on your background, circumstances and needs. To find out what help may be available from grant-giving charities, you can use the Turn2us Grants Search at turn2us.org.uk/Your-Situation 

Some employment charities offer hardship grants, such as the Civil Service, Chartered Accountants Benevolent Fund, Fire Service or military charities like Royal British Legion or SSAFA.  

Help may also be available through your local council, such as local welfare assistance schemes. These are discretionary and not all councils have them but it is worth checking. You can find your local council’s details at gov.uk/find-local-council 

To check you are claiming the benefits you are entitled to, please see:  turn2us.org.uk/Benefit-guides/Beginner-s-Guide-to-Benefits/Checking-benefit-entitlement 

You can find more information around financial and legal support for families with dementia on our website. 

If you need advice or support with any aspect of dementia, please contact Dementia UK’s Helpline on 0800 888 6678 or helpline@dementiauk.org