Dementia care scandal: ‘No one likes to ask what happens to Mum when the money runs out?’

I knew my mother, who had been diagnosed with dementia in 2019, needed more than I could give her (Picture: Supplied)

Sitting in the manager’s office of the care home I had just viewed, I felt something I hadn’t felt for a long time when it came to my mum: relief.

It really was a lovely place — warm and welcoming, with daily activities, nutritious meals, a bedroom with an ensuite, and beautiful gardens to explore. 

By this point, I knew my mother, Diane, who had been diagnosed with dementia in 2019, needed more than I could give her. But moving her into a home still felt like a betrayal. Now I’d seen the place for myself, I finally believed it was the best thing for both of us. 

‘So, if you’re happy to go ahead,’ the staff member said, ‘I’ll need proof that you have £300,000 in assets and can afford the £8,200 monthly fees.’

Any relief I felt quickly turned to panic. A few seconds of mental arithmetic told me we were looking at almost £100,000 a year. 

I also knew a live-in carer for someone like Mum, with moderate dementia needs, wouldn’t be any cheaper — even if we didn’t also have the problem of her living in a one-bedroom flat with no space for a carer. 

Society warns you about the emotional trauma of dementia. We all know it can slowly dismantle a family as you watch someone you love fade away. When Mum was diagnosed, my fears were the obvious ones: would she ever meet her grandchildren? How would I cope if she stopped recognising me? 

Ella’s mum, Diane was diagnosed with dementia in 2019 (Picture: Supplied)

What I never really considered was the financial devastation dementia could bring. Naive perhaps — but, it turns out, very common. Whenever I tell friends how much her care costs, the reaction is always the same: shock. 

And the thing about dementia is that it can be a slow burn. Families are not just facing £100,000 care bills once, but year after year, sometimes for the better part of a decade. 

It was only when I was forced to enter the world of dementia care that I discovered how brutally means-tested old age can be. 

In England, if you have more than £23,250 in savings or assets, you are expected to fund your own care. A lifetime of careful saving, paying off a mortgage, putting money aside for retirement, children, grandchildren — suddenly becomes the reason you are excluded from help.  

There is some support available. People with dementia can often claim Attendance Allowance, a non-means-tested benefit designed to help with care needs. But compared to fees of £8,000 or £9,000 a month, it can feel like pouring a cup of water onto a house fire.  

Families are also told about NHS Continuing Healthcare -funded care for people with significant medical needs. But dementia exists in a grey area between “health” and “social” care.

‘It was only when I was forced to enter the world of dementia care that I discovered how brutally means-tested old age can be,’ says Ella (Picture: Supplied)

To qualify, a person’s needs must be deemed primarily a health issue rather than a social one — a distinction that can feel almost philosophical when someone can no longer dress, wash or recognise their own children. Many families spend months appealing decisions, only to be turned down. 

And then comes the question nobody wants to ask out loud: what happens when the money runs out?

After years of paying eye-watering fees, many discover there is no guarantee their relative will even be able to stay in the same care home once council funding is needed. Some homes accept local authority rates; others require families to pay expensive top-ups, and some residents are forced to move entirely. 

Just when someone with dementia most needs stability and familiarity, financial reality can snatch that away too. 

Navigating the cost of care for my 79-year-old mum has been complex, and there is something deeply uncomfortable about reducing a lifetime of achievements into savings accounts, assets and financial assessments to be handed over to near strangers.

‘There is something profoundly sad about knowing the money she worked so hard to save will never be used in the way she intended.’ (Picture: Supplied)

Mum had spent years carefully building up savings for retirement, often talking about a future “bolthole by the sea” where she imagined she might finally slow down and enjoy life after decades of work and responsibility.

Instead, we funded her first year at the care home through those savings, before putting her flat on the market to buy ourselves around five more years. After that, it’s unknown territory.

There is something profoundly sad about knowing the money she worked so hard to save will never be used in the way she intended. What was meant to represent freedom and independence in later life has instead become the price of safety and care.

Rationally, I know the money is still serving her, but emotionally it is difficult not to grieve the future she once imagined for herself — and, if I’m fully honest, a future I had imagined too: sandy sandwiches with Mum and my children on the beach, the ordinary kind of memories you quietly assume there will still be time to make.

‘I had imagined a future which included sandy sandwiches with Mum and my children on the beach,’ says Ella

But worse than the financial strain is the emotional toll: sitting down and calculating how long we can afford for Mum to live.  

The guilt of catching myself worrying that she might live for another decade. Then the immediate shame that follows, and the reminder of how lucky I am to still have her at all. 

The cost of care has a way of dehumanising the elderly, reducing people to figures, thresholds and means-testing calculations instead of seeing the person they once were — and still are. 

Some days, Mum still laughs at the same things she always did. She still reaches for my hand when she is frightened. She still smiles when she sees her grandchildren. Those moments remind me that dementia may change a person, but it does not erase them. 

And perhaps that is what makes the financial side of care feel so brutal. Because while the system sees assets, thresholds and affordability, families still just see their mum. 

Today, Ella is taking on Metro’s Lifeline Challenge walking over 50km in the Cotswolds to help raise awareness and vital funds for Alzheimer’s Society. If you would like to donate to Ella and our other Lifeline trekkers taking on over 1000km between them this weekend, please click here.

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