Efforts to fix the social care system could be undermined by an uncomfortable reality: many older people reject help from professional carers, even when they need it. Emily Kenway, a social policy doctoral researcher at the University of Edinburgh, argues that any meaningful reform must confront this taboo rather than focusing only on funding and staffing.
Kenway, the author of «Who Cares: The Hidden Crisis of Caregiving and How We Solve It», collected accounts from families caring for ageing parents as part of her research. One woman, named Lisa in the research, described how her mother, who has dementia, repeatedly refused to let care workers into her home. For months, workers would arrive to find the front door locked, with the elderly woman determined to bar their entry. Often, the only solution was to break the glass in the front door. Lisa’s mother eventually accepted help, but only after years of frustration and smashed windows. The local glazier had become so familiar with the family that he gave Lisa a discount.
A second story ended without acceptance. A woman named Lily spent two years trying to persuade her elderly father to agree to social care. When persuasion failed, she lied to him. He now thinks the people who visit twice a day are nurses who are legally required to dispense his dementia medication.
Kenway says such experiences are common among people caring for ageing parents. They complicate the idea that the crisis in care is purely a shortage of services. Many families are providing eldercare not because no professional help is available, but because their relatives will not accept it, or will not do so without a years-long fight. Some families find workarounds; others are left with no option but to persuade, negotiate and, in some cases, deceive.
This presents an uncomfortable challenge for the new prime minister, Andy Burnham, who has said he wants to fix the care system. Any social care review promising to improve provision will have to take account of the fact that older people themselves can be the main barrier to receiving the help that is meant for them. Without doing so, even a well-designed reform could fail in practice.
The fear of losing independence appears to lie at the heart of much of this resistance. Many older people fear that agreeing to care workers looking after them marks the beginning of the end of their autonomy, however much the support is intended to protect it. In the case of dementia, that fear is compounded by confusion and a determination to keep control of one’s own home. Care can feel less like a source of safety and more like an intrusion into the life a person has built.
Kenway argues that any social care review must take account of this reality. The challenge, she suggests, is not simply to provide more care but to design services that older people are willing to accept. The accounts she collected suggest that help which is offered but refused does little to ease pressures on families, and that carers are often left to manage years of refusal on their own.
The issue has remained largely taboo because it is uncomfortable to admit that care can be refused by those who need it most. Yet acknowledging the problem is essential. If the government’s ambition to fix care is to mean anything, it must include a serious conversation about why older people say no to help, and what can be done to make help feel safe rather than threatening. The stories of Lisa and Lily also point to the emotional toll on family carers, who are often caught between respect for a parent’s wishes and the urgent need for support.
The names of the family members in the research have been changed to protect their privacy.
