There’s something massive we’re missing about Alzheimer’s

It seems deeply unfair that families affected by this condition don’t receive the same financial support as people with other forms of illness

Tonight, after work, I’ll drive 200 miles to Yorkshire to empty Mum’s flat. It’s just three years since she moved in: we had hoped she might enjoy a few more years in her cosy new home. However, as John Lennon once said: life is what happens when you’re busy making other plans.

Mum is 74, the same age as another musical hero, Grace Jones. On her better days she can still move Grace-like – not the hula-hoop, but high kicks; throwing her feet over her head (admittedly, she’s only four foot ten). But unlike Grace Jones, mum has Alzheimer’s.

And now we hear news that a new drug, lecanamab, can slow down the disease. It’s a significant breakthrough – but while I welcome the news, it still seems deeply unfair that the families of people with Alzheimer’s have to fund their own care.

First diagnosed six years ago, the “condition” – not disease – took hold with such savagery that Mum is now unable to eat, wash, read or perform even basic functions unaided. Quite apart from the physical and emotional toll on both her and us, her family, there is the financial cost. Living as I do in London, with two children and a full-time job, it has been difficult for me to go home to help her as much as I would like; especially as I’m on a temporary contract, which means when I don’t work, I don’t get paid.

When it became apparent that Mum was unable to manage in her home, we moved her into a sheltered housing complex. As she now required extra support, we took advantage of the local authority’s Support In Mind team. They visited twice a day initially, providing her with dignity, security and – crucially – company.

This care came at a cost: mum’s teaching pension of £550 per month was swallowed whole. She did receive Attendance Allowance, which meant some of that outlay could be clawed back, as well as housing benefit. This, along with her state pension, and the fact she had weirdly forgotten she drank and smoked, meant that for a while Mum was comfortable – financially, at least. Perhaps fortunately, she doesn’t own her own home. This at least meant she wouldn’t be forced to sell up to pay for her care.

Then Mum’s father died, leaving her a sum in his will. Having spent his final years fretting about his oldest daughter, he specified it should be spent on her support. I informed the relevant authorities, and as well as Mum’s benefits being withdrawn, the cost of her care rose to £1600 a month. The money that Granddad left her began to go down fast but we accepted it as a fair price to pay – why should the taxpayer provide when our family still had the means?

Then the care team began raising additional concerns. Mum would wander the streets, stand in the middle of the road, suffer hallucinations. I was informed she would require even more support, at a higher cost of £2200. We were still digesting this as a family when Mum had a fall in the street and was taken to hospital, where she was diagnosed with Covid. Concerns were raised about her mental state (after she wandered the wards in a state of undress), and she was moved to a large residential home in Halifax under a discharge to assess – or D2A.

I went to the assessment, where a friendly social worker confirmed Mum no longer had the capacity to live alone, even with extra support. She would remain at the home, where fees are £3,300 per month. As she still has savings, and Alzheimer’s is not classed as a disease, this is wholly self-financed.

Once Mum’s savings dip below £23,000 (within a year at the current rate) the local authority chips in; when they fall below £14,250, the local authority meets the full cost. As yet we do not know if the authority will agree to Mum remaining where she is when that happens; they might decide she should be moved somewhere smaller, cheaper, perhaps less unsuitable, to save money.

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Lest I be accused of only caring about this dwindling inheritance, Mum told me years ago that for various reasons she was leaving me nothing in her will. However, it does seem unfair that there will be virtually nothing left for the other beneficiaries. The government has been planning a cap on care costs for years; in the meantime, families like mine are finding that when a loved one develops Alzheimer’s, quite apart from the emotional cost, there are financial ones too.

Growing old is inevitable, and as an increasing number of us live longer, so too are the numbers suffering Alzheimer’s. Although I welcome news that lecanemab might alleviate some of the symptoms, it does seem unfair that families affected by this condition don’t receive the same financial support as people with other forms of illness.

Obviously that support must be funded somehow, whether through higher taxes, increased NI contributions, more means testing, or a later retirement age. What we cannot do is keep kicking this can down the road – because old age comes to us all and with it, an increasing number of us are going to be affected.