Lisa* has used her local glazier so many times that he gives her a discount. For months, when care workers arrived at her mum’s home, they would find the front door locked and the elderly woman – who has dementia – resolute in her determination to bar their entry. Often, the only solution was to break the glass in the front door. When I met Lisa, who was a participant in a research project I ran, her mother had finally accepted help, but it had taken years of frustration and smashed glass. Unlike Lisa, Lily* never got to acceptance. After two years spent trying to persuade her elderly father to accept social care, she lied. He thinks the people who visit twice a day are nurses, legally required to dispense his dementia medication.

Experiences like these are common among people caring for ageing parents. They present an uncomfortable challenge for those who, like our new prime minister, Andy Burnham, wish to fix our care system. Many people are like Lisa and Lily: they are providing eldercare not because of the lack of social care, but because their ageing relatives will not accept external help, or at least not without a years-long fight.

Numerous studies have shown that people with dementia are prone to refuse medical and wider forms of care. More broadly, we know that people’s preferences for treatment shift over time and as their conditions change: what your loved one thinks they’ll want in the future isn’t necessarily what they’ll accept when that future comes. There is a lag between ageing parents developing care needs and accepting external forms of help, and it’s in that lag that family members step in. There isn’t enough formal evidence of this problem – too few studies ask why people receive the type of care they do, rather than assume it’s due........

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