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.
1) Simplify finances
This may help reduce some of the stress around navigating the cost-of-living crisis. Setting up direct debits with your bank for your regular outgoings is a good start and can lead to more predictable bills.
If you have lasting power of attorney (LPA) for property and financial affairs for someone with dementia and they are struggling with energy bills, we suggest you contact the provider on their behalf. Supplying proof of LPA can allow you to manage the person’s energy account.
If your local bank has closed and you are unable to travel to a branch, ask your local Post Office if you can do your banking there, including paying in money and arranging direct debits. Many Post Offices now have this facility. You could also look at telephone or online banking options.
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.
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
If you need advice or support with any aspect of dementia, please contact Dementia UK’s Helpline on 0800 888 6678 or email@example.com
How families are being affected by rising costs
“The tumble dryer costs a fortune now”
“My mother has dementia and is incontinent and often removes her pads or has accidents. The washing machine is already on once or twice a day and now that the winter is coming my father is really worried about not only the cost of washing but also the cost of drying it. He used to use the tumble dryer but that is going to cost a fortune now and using the radiators to dry washing isn’t cost-effective either. We don’t know what we can do and how we are going to manage to pay the bills.”
“My father is always complaining of the cold”
“Early last year we bought my father an electric fire as he was no longer able to operate the gas fire safely due to his dementia. We did not expect at the time that electricity costs would rise astronomically. My father is always complaining of the cold, even when he wears multiple layers, and we are really concerned how we going to manage to keep him warm this winter. He just cannot afford to keep an electric fire on all day and he needs to be warm.”
“I don’t know how we’ll pay our bills”
“My husband has Alzheimer’s disease and has had falls. I need to leave the bathroom light on at night and have a nightlight on the landing. Sleep is a problem too and he is often up during the night and it is not always easy to get him back to bed, so we are both up with the fire and lights on. I just don’t know how we are going to manage to pay our bills this winter.”
Financial and legal sources of support and advice
Here you’ll find information on the legal terms you might encounter when you care for someone with dementia and advice on the financial benefits that you may be able to claim