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

March 23, 2022

The increase in energy bills from April will affect electricity, gas and perhaps other services like water suppliers.  

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 due to a family member having to leave their job because of a diagnosis of dementia, or caring responsibilities. Families may also face processing delays, in addition to inconsistencies in decision-making, around applications to financial support for day-to-day living; this can include Attendance Allowance, Personal Independent Payments and Carers Allowance. The current energy crisis is compounding these worries.  

As a result, Dementia UK has compiled some advice around how families can better manage their finances at this time as well as how to navigate conversations with customer vulnerability teams at energy suppliers.  

To help raise awareness of the unprecedented financial hardship that many carers are facing, we have signed Carers UK’s open letter to the Chancellor, calling for greater financial support for carers in light of the UK’s cost of living crisis.

1) Simplify finances  

Looking to simplify as much of this as possible may help reduce some of the stress around navigating the changes. Setting up direct debits at the bank is a good start and can lead to cheaper bills.  

If you have Lasting Power of Attorney for Finance for a family member who has dementia and they are struggling with energy bills, we suggest you contact the provider on their behalf. Supplying the proof of LPA can allow you to manage the handling of the person with dementia’s energy account.  

If your local banking branch has closed and you are unable to travel to a branch, ask your local Post Office if you can do your banking from there, including paying in and arranging direct debits. Many Post Offices now have this facility. You could also look at telephone banking options. 

Someone looks at their bills with a cup of tea while on their ipad

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

Many providers have ‘customer vulnerability teams’, where you can register the entire household affected by dementia as requiring support to navigate any future changes. They can also talk through any options to support you with payments, such as grants. If the supplier doesn’t have these, you can ask for the number of a specific salesperson to call you back at a time that works for you.

Preparing for the call: 

  • have a pen and paper 
  • have your bill account details ready and any supporting documents like LPAs 
  • have some uninterrupted time  
  • think about what style of communication works best for you when talking to the supplier, perhaps large text format on letters, documents, screen or live chat may be useful. Some webpages have the ability for you to amend this yourself – but ask the customer service representative from the company to help with this. For anyone with any challenges around processing information, for example you may live with PCA – a subtype of dementia which affects visual processing – this can be a useful consideration 
  • have an idea of what outcome you want from the conversation (eg the supplier recording that you are a carer of someone with dementia, or someone diagnosed, 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 electricity network. They can then pass this through to your energy supplier. Priority services are applicable for anyone classed as ‘vulnerable’ so people living with a disability or long-term health condition, which should include dementia. As a vulnerable person or family, you can ask them to come up with a plan to support payment of bills 
  • enquire with your provider about the benefits of having a smart meter installed. Having this installed may be of more benefit to people with dementia as they don’t have to remember to take meter readings and they’ll get a more accurate bill 
  • you could also ask about a water meter – if you have less people in the house than bedrooms, a water meter tends to be more efficient on cost 
  • if the call is proving to be overwhelming, enquire about the possibility of the supplier calling you back to prevent a cost to you, if they don’t have a free phone line 
  • ask the supplier to send a summary email or letter of what has been agreed; this may be beneficial for anyone who is hard of hearing or finds it challenging to process information due to cognitive issues 

3) Access local support  

We know that families can face significant mental health issues due to dementia. Anxiety and depression are common experiences and any issues around managing finances, including energy payments, can add to these worries. 

Dementia UK’s Admiral Nurse Dementia Helpline supports families facing mental health issues and can provide coping strategies to help reframe perspectives.  

The Helpline can also provide an overview of dementia-specific support groups or local agencies in your area. Citizens Advice Bureau and your Local Authority can provide more general support around managing finances.  

Some employment charities may help with hardship grants, such as civil service, Chartered Accounts Benevolent Fund, Fire Service or military charities like RBL or SSAFA. 

You may also be eligible for other one-off payments to help you pay for energy payments. With the Winter Fuel Payment for example, anyone who was born on or before 26th September 1955 is eligible which would include many people diagnosed with dementia. For further information around how to access this, please visit: gov.uk/winter-fuel-payment/how-to-claim. 

For more information around financial and legal support for families with dementia visit: dementiauk.org/get-support/legal-and-financial-information/sources-of-support-and-advice/. 

If you need advice or support around dementia, please contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or helpline@dementiauk.org.

One family’s story of rising costs

*Note that story has been anonymised to protect identity 

My dad has dementia. We both live in electric-only households which is already a very expensive option. It is a worry as my dad lives part of the week with me and part in his own home. We turn all the power to heating and immersion off when we bring him over to cut costs for him, but it’s still expensive. Having him with us in the house in the daytime means I have to put the heating on when I otherwise wouldn’t.   

My provider was taken over and previous rates were honoured only until November, after which my default new provider has nearly doubled those.  I couldn’t do anything as by then there were no deals or options to switch, due to the price cap raise and high price of fuel and power. It is a huge concern as we are already in fuel poverty, so with the November 2021 rise and more huge rises in April and September 2022, it’s a stressful time.   

My husband works full time but I only work one day a week during term-time due to looking after dad and my children. However, we don’t ever seem to qualify for any benefits.  

This squeeze on finances, including the fuel crisis, also impacts on everything else. Dad can’t afford to pay for private care unless he uses savings. I am fully expecting that with the fuel and other costs increasing, he will be dipping into savings more and more – and that is without even thinking about his future care needs. 

The squeezed middle is a term often used; this isn’t squeezing, it’s strangulation, and long-term strangulation at that.  Not so much survival of the fittest, more survival of the richest! 

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