Older people frequently refuse social care due to a deep-seated fear of losing independence, a taboo that could derail efforts to reform the system. Emily Kenway, author of 'Who Cares: the Hidden Crisis of Caregiving and How We Solve It', argues that any realistic social care review must confront this uncomfortable truth.
Stories of Refusal
Lisa, a participant in Kenway's research, spent months dealing with her mother's refusal to let care workers into her home. Her mother, who has dementia, would lock the door, forcing Lisa to call a glazier so often he gave her a discount. Lily's father, also with dementia, only accepted help after she lied, telling him the visitors were nurses legally required to dispense his medication.
These experiences are common among those caring for ageing parents, presenting a challenge for policymakers like Andy Burnham, who aim to fix the care system. Many families provide eldercare not because of a lack of services, but because relatives reject external help, often after years of resistance.
Why Refusal Happens
Studies show that people with dementia are prone to refuse care. Preferences shift over time, and there is a lag between developing needs and accepting help. A 2007 study in the Journal of Nursing Management found that 'frail older people' attributed their reluctance to fear of losing independence and the humiliation of being seen as needy.
Cultural factors also play a role. Malik, a British Muslim, explained that for his family, 'It's a cultural thing, it's also a religious thing … responsibility for the parents just lives within the family.' Black and minority ethnic people are less likely to use formal services, partly due to community norms and a lack of culturally appropriate options. Past discrimination may also reduce uptake.
The Political Dilemma
Kenway raised this issue at an event with policy advisers, where an attendee asked, 'What's the risk of saying this?' There is concern that discussing refusal could undermine the case for government-funded care, playing into rightwing arguments that care is a familial concern. However, Kenway argues that ignoring the truth harms countless families.
While at least 400,000 people in England are on waiting lists for adult social care, according to the Association of Directors of Adult Social Services, many others refuse help even when it's available. Kenway stresses that improving services is part of the solution: a study of OECD countries found that 'older adults in countries with greater national expenditure on old age support … showed a stronger preference for formal care'.
A Cultural Shift Needed
To address refusal, society must undo the shame associated with dependency. Kenway suggests centring the principles of the disability justice movement, which emphasises that interdependence is fundamental to existence, not a personal failing. This cultural change is essential for future generations.
In the meantime, reforms must acknowledge the reality of refusal, providing better rights and resources for family carers alongside improvements to social care. The question remains whether the government will face this reality or continue to ignore it.
