by Hannah Riches
2016 my husband, Neil, was diagnosed with Young Onset Alzheimer’s Disease. At the time he was only 51 years old and was still serving as a Police Officer. We had two young daughters 6 & 5 years old and had a busy life with work, school, friends, family and the activities that come with a young family. I was 41 and was working part-time to accommodate childcare. We were careful with money and despite a large mortgage and a house that needed work we felt quite comfortable; able to afford camping holidays, a second-hand car and the odd meal out. Nothing extravagant but life tends to revolve around kids at that stage in your life and we were happy with that. The plan was for us to swap roles in a few years once Neil retired from the Police and I would restart my career as he took on the primary carer role and went part-time. Ha! What is it they say about the best-laid plans? At no point did we factor in a terminal debilitating disease that would result eventually in neither of us being able to work. Obviously, the diagnosis had a massive impact on us all emotionally, physically, socially, and intellectually but the financial worry has been equally difficult. Our financial situation has been a crippling stress factor in our well-being and has coloured every decision we have had to make since he received his diagnosis. Any serious illness has a detrimental effect on your financial situation but I have encountered a few issues that seem peculiar to dementia and thought it might be of use to anyone who finds themselves in my situation.
Neil is one of the estimated 42,000 people in this country who have Young Onset Dementia (YOD) (Alzheimers UK report 2014). YOD is defined as dementia affecting anyone under the age of 65, ie people of working age. Their being younger does not change how dementia will affect them but it means they are more mobile and active and will need different support. It covers a broad age range but, like my husband, people with a YOD diagnosis can often find themselves at a very busy stage of life with work, mortgages, dependents, loans, and other financial commitments. Even within the YOD spectrum, Neil was young to be diagnosed and having had a second family later in life also had much younger dependants than usual. A perfect storm for financial stress. Over the past six years, Neil’s income has halved and mine has gradually dwindled to nothing as I have reduced my hours, switched jobs to reduce responsibility and finally had to give up work to look after him full time.
How have we coped? I took a pragmatic approach; we downsized our house, slashed our monthly outgoings and reined in spending. In some respects, we were lucky. As a serving Police Officer, Neil was due to retire in a few years and being able to apply for his pension was a weight off our minds, eventually. It took over a year for them to decide he was eligible for an ill-health pension. It was a very stressful and lengthy process with many hoops to jump through at the same time as we were also trying to identify what was medically wrong. Dementia is notoriously difficult to diagnose – made worse by most people’s reluctance to cooperate and refusal to admit anything is amiss. In fact, Neil’s willingness to find out what was wrong and his awareness that his memory was failing
confused the consultant, so his diagnosis was delayed, which complicated the pension request. Nevertheless, in mid-2016 we had the pension agreed and although we now had some financial certainty it meant that our income nearly halved. I appreciate how fortunate we are to have the pension at 52 – a new friend was worried about her husband’s behaviour and the day after she brought this up, he went into work and resigned leaving them high and dry. He was a contractor, and they were now incomeless before a diagnosis had even been confirmed.
This type of behaviour is not uncommon. There are over 200 different neurological conditions that come under the umbrella of “dementia”, but they all cause an ongoing decline of brain functionality and are terminal with no cure. Symptoms include difficulty processing information, loss of memory, loss of decision-making ability, difficulties with communication and lack of empathy. Random decisions and odd behaviour are a regular occurrence. With hindsight, I realise that Neil starting to forget to pay our credit card incurring fines and spending weeks of indecision over insurance and electricity bill renewals were the first signs of his Alzheimer’s. He had been fastidious about these matters. Maybe I should have taken notice when we discovered he had forgotten to get the car MOT’d for 8 months (shhh!) but I was also busy and just put everything down to him caring more about work than home. Anecdotally, getting into trouble with money and managing bills and admin is not an uncommon thing with people who subsequently receive a diagnosis of dementia.
Acting on advice from a local charity Neil signed a Power of Attorney to allow me to legitimately take over all financial responsibility. I urge anyone in our situation to tackle this conversation as soon as possible. Having a power of attorney makes life so much easier – it does not resolve all problems. I could bore you to death with tales of me angry sobbing with the bank and officials as they again ask me to pass the phone so they can check details with my husband. But without it, you are powerless to act on their behalf without going to the Court of Protection and this can take years and cost hundreds. Have that difficult discussion, use all your powers of persuasion, and get them to agree to a Power of Attorney while they have the capacity to agree – please.
The same charity also told me about Personal Independence Payments (PIP) – a DWP benefit payable to people of working age who can no longer do so due to medical reasons. Once in receipt of a PIP other benefits are opened up to you; Carer’s Allowance, Reduced Council Tax. We applied – we were rejected. It was a humiliating and harrowing experience for Neil and not unusual for people with dementia to find it hard to meet the criteria. It’s definitely a process geared more towards physical disability than mental. I waited and reapplied to take my Admiral Nurse (a dementia specialist) along with us to the interview. It seems they believed her and we were now granted it. www.gov.uk/PIP/how-to-claim. It took a while for me to deal with the shame of being reliant on a
government handout but at some point, you have to get over yourself. Both of us would work if we could – Neil’s illness wasn’t something we chose. The benefits are there to help us and I am very grateful they are.
Alzheimer’s Disease has a typical life expectancy of 12 years post-diagnosis according to the NHS. Despite being a terminal disease with ever-increasing complex needs the ongoing support for people living with dementia is normally assessed as being a social care need rather than a health care need. Guess what: social care needs are self-funded subject to means testing affordability and health care needs are provided free by NHS. Despite often having very severe health needs it is only nearing the very end of life that someone with dementia will be likely to qualify for NHS Continuing Healthcare funding. It is extremely upsetting having to contemplate a time when your partner can no longer dress themselves, eat unaided, communicate effectively, and become incontinent. What help will you need? When will you need it? How will you cope with him? How can I make this as normal and ok for the children? It is even more upsetting having to worry about how much will it cost? How will we pay for it?
Care is expensive. A support worker in this area is approx. £18p/h. A care worker qualified to help with dressing and personal needs will cost £25p/h and should I be unable to care for him at home we will be looking at £1100 per week for a Dementia Care Home. I want Neil to have the best life he can for as long as he can but as his needs progress, I have no idea how I can provide that alone while also looking after our girls. I will need help and have no idea how we will afford it.
Over the past year, I have begun to need support to help care for Neil. We have had a care needs assessment and then a means test assessment carried out by the Local Authority. Yes, they agreed, you need some help. No, sorry you don’t qualify for financial help. Despite a mortgage and two children under 16, with his Police Pension Neil is a self-funder. In England, you are allowed savings of up to £23,250 but at the time we didn’t have this. So even a pension will take you over the threshold. They do not consider you as a family unit – the assessment is based on Neil alone. This can lead to incongruous results, in my opinion. I gave up work to look after our children and then my husband, so have no income yet they expect me to be responsible for half mortgage and child costs. Conversely, a couple I know where the wife is living with dementia receive full funding because she was the low earner. Her husband is able to continue working because based on her income the local authority will pay for carers to visit twice a day. I do not begrudge them the help – living with dementia is tough but their joint income is significantly higher than ours and they receive help. I feel penalised for having given up work to look after first our kids and then him.
Dementia adversely affects women more than men; more women are diagnosed with dementia, approx. 70% of family carers are women thus they also bear the brunt of the care burden and subsequent loss of income which can also result in an inability to plan as well for retirement (www.dementiastastics.org gather together several reports demonstrating this). Equally, women are much more likely to work in the underpaid care sector. Historically it has received less funding for research. Is dementia a feminist issue? My experience would say yes – I feel like a walking statistical cliché. Does knowing this change how I behave in daily life – no. In her book, Invisible Women, Caroline Criado Perez dedicates a chapter to this subject. It’s a good read.
Dementia is a horrendous disease that wipes the legs from under you whatever the stage of life you are at. However Young Onset Dementia is particularly devastating – expecting to be in the earning stages of your life with many financial and emotional commitments you suddenly find yourself grappling with the loss of self and loss of income and the gradual loss of my partner too. I feel isolated from my friends who are at a very different stage in their lives and grieve the life Neil and I planned for our family.
Hannah Riches is a former Police Officer, craft shop owner and logistics fleet manager. She is now a full-time carer to her husband and a member of Dementia UK’s Lived Experience Advisory Panel. In lockdown, she and her daughter, Bessie, created a cookbook to raise money for Dementia UK.
Hannah and her daughter’s website and social media: