The article recounts a family's experience with dementia care, highlighting the struggles, waiting times, and lack of assistance they encountered throughout.
Apples can be weapons. My mother found this out one night at 3am, when my stepfather John started lobbing them at her as she stood outside the house on the patio, begging to be let back inside as he screamed at her.
His wife of 30 years was now a stranger to him. My mother called the emergency number for social services: answerphone. She called the police. By the time they turned up, my stepdad was peaceful, smiling at the constable who couldn't see why anyone had called 999.
John, a tall, elegant Yorkshireman who had worked for decades as a textile designer, was now someone who threw things at my mother – apples, chairs, anything – because his brain was rotting. My mother had to endure years of being woken up at night by his distress; of watching him fail to put a cup on a saucer; seeing his handwriting deteriorate into scribbles, and his language disappear, too.
She had to endure this because there was no help forthcoming – and, according to a devastating report released this week by Alzheimer's UK in partnership with the Daily Mail's Defeating Dementia campaign, there still isn't. My family's experience with dementia care began as it would go on. In 2004, when my stepfather was 66 and first presented with symptoms, a neurologist told him: 'Good news. It's early onset dementia, not a brain tumour.
' It was casual in its cruelty, but this was an early diagnosis, and unusual for it. The average waiting time for diagnosis now is three and a half years, even though 95 per cent of people surveyed in a 2025 Alzheimer's Society report 'saw a benefit to getting a dementia diagnosis'.
John, a tall, elegant Yorkshireman who had worked for decades as a textile designer, was now someone who threw things at my mother – apples, chairs, anything – because his brain was rotting The truth is that if John had developed a brain tumour, his quality of care under the NHS would have been wildly better. Dementia is now Britain's biggest killer and one million people are living with the condition.
But unlike cancer or heart disease, its treatment – or management – has always sat awkwardly between 'healthcare' and 'social care'. As a result, many dementia sufferers end up paying enormous sums for support, including carers or day centres, that patients with other illnesses receive free through the NHS.
The new report also found that newly diagnosed patients are waiting more than five months before referral to a specialist memory clinic and that only a third of patients are offered 'cognitive stimulation therapy', despite it being proven to improve memory, mood and daily functioning. Worst of all, one in five people surveyed told the Alzheimer's Society that they had received no support at all after diagnosis.
As someone who has experienced this lack of help first-hand, I'm astonished that victims of dementia and their families are still struggling to find assistance when they most need it. Our family was meant to be one of the lucky ones: my parents' friends included doctors and consultants. It didn't help a jot. After John's diagnosis, my mother contacted the local 'memory clinic', which did the usual tests – which he failed.
He had dementia, so they said it was probably Alzheimer's. He was put on Aricept, the standard drug then used to treat the condition. Today, he might also be offered memantine, a substance that stops the chemical glutamate from overstimulating nerve cells in the brain. The Aricept didn't help.
He was given other drugs that gave him chest pain bad enough for us to rush him to A&E, others that caused him to suffer a near-stroke and another that made him tip over while seated on the bed and cut his head, needing 14 stitches. As the latest report reveals, only half of people who are prescribed dementia medication stay on it for more than a year. Our local Alzheimer's Society offered a day care centre.
But my stepfather fell between the cracks: his brain was damaged, but his spirit was still present enough that he would not countenance sitting in a circle playing geriatric games. Again, nothing has improved since then. There is still no standard dementia 'care pathway' in Britain to guarantee that every patient receives the same support and follow-up from diagnosis to end of life. Even now, there are not enough support workers.
Which means the burden of care is still on the patient's family. A review earlier this year found that there are an estimated 5.8 million unpaid carers in the UK, with 1.7 million providing more than 50 hours of care per week. I have lost count of how many garden-centre cafes I and my siblings would take my stepfather to, just to give my mother a few hours' respite. But it was nowhere near enough.
She was surviving on three hours' sleep a night, because John would wake her in distress and fear. My strong, capable mother, a headteacher who ran her own thriving business, reached the point where caring for her husband was so difficult that she considered putting them both in the car and driving off a cliff. The end point came when I visited the house and noticed with alarm that she had hidden the knife rack in the kitchen from John.
Not long after that, he had grabbed the steering wheel while she was driving. We knew then that drastic action was needed. My stepfather was sectioned under the Mental Health Act and placed in an 'assessment centre'. We thought that would mean he was safe.
Instead, it meant that he was on the first step of a path of deliberate euthanasia. He lost 5 st, which the assessment centre said was down to the Alzheimer's .
Finally, he was sent to hospital. But only when his injuries – bedsores, abrasions and other injuries the assessment centre could not explain – turned septic. Eventually, he was put on a geriatric ward. After a week or so, we noticed that John's drip was switched off every time we arrived.
I read in his medical notes the words 'dying adult care pathway'. No one had told us he was dying. He wasn't, until the system decided it was the best way to treat him. After his death, my mother raised £100,000 to fund five Admiral Nurses – specialist dementia nurses – for Wakefield, West Yorkshire, where she lived, because John's life could have turned out so differently if he'd had access to one from the beginning.
She desperately wants things to improve for the lives of others with dementia. She's still at it: even now, at 86, she spends her time distributing robotic cats for people with dementia. They are proven to soothe distressed dementia sufferers who are incapable of caring for a living pet. But that is not enough.
The Daily Mail's report calls for an 18-week waiting time target between referral and diagnosis. It wants more biomarker-supported diagnoses, something I wish had been available for us. This means testing for tangible signs of dementia, using CT, MRI and PET scans, CSF testing and, in the future, blood testing.
There are plenty of other sensible recommendations about staffing levels and better, joined-up care, but the essential point is this: 15 years after my stepfather died, we are still failing people with dementia. It is a disgrace, and we have to do better. Rose George is author of Every Last Fish.
Dementia Care Alzheimer's UK Daily Mail Defeating Dementia Campaign Textile Designer John Emotional Distress Early Onset Dementia Medication Trials Quality Of Care Support Providers Cognitive Stimulation Therapy
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