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People with dementia cut vital care to cope with inflation

Means-testing leaves people paying for their own care, exposed to rising fees and energy bills.

By Polly Bindman

Given the daunting price of energy bills this winter, the prospect of a heated office may be a source of comfort to the millions of people returning to work after the Christmas break.

This is sadly not an option available to all: people with dementia spend, on average, 22 hours at home each day, according to the Alzheimer’s Society, making them particularly vulnerable to rising energy costs. 

According to a survey published by the charity in December on how the rising cost of living is impacting people with dementia in the UK, one in four who reported struggling with bills said they were retreating to one room to cut back on costs, while one in ten said they were reducing their social care or stopping it entirely. In the same survey participants living in sheltered housing, supported living and care or nursing homes reported average living fee rises of £23.20 a week.

Many people affected by dementia in England are reliant on the social care system, which unlike the NHS uses a means-tested financing model. As such, the Alzheimer's Society reports that two-thirds of dementia care costs in England are borne by people with dementia and their families.

Thanks to its strict means-testing threshold for care, even before the pandemic introduced additional pressures to the service England was dubbed by Age UK the "poor man" of developed countries when it comes to long-term care. Unlike other countries such as Germany, which provides a basic level of universal support, England has required people with savings or assets totalling above £23,250 to pay the full costs of their long-term care since 2010.

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[See also: Cornwall Insight’s Gareth Miller: “Next winter is going to be really challenging”]

This limit has remained stagnant, failing to keep up with inflation. As such, in 2021 it was approximately £5,000 lower than it would have been had it kept up with rising prices. With today’s soaring inflation, the difference would be even starker.

In 2025 the limit is due to rise substantially to £100,000 as part of measures first announced by Boris Johnson’s government in 2021. They were supposed to come into force in October 2023 but Jeremy Hunt, the Chancellor, has delayed them by two years.

The delay affects other social care reforms. such as an £86,000 limit on what people can contribute to their own care throughout their lifetime, which Kate Lee, CEO of the Alzheimer’s Society, calls the “first step towards tackling crippling care costs, at a time when people with dementia are facing even bigger bills”.

While the estimated 900,000 people with dementia in the UK is expected to rise to one million by 2025, increasing demand for care services is not being matched by supply. The vacancy rate of jobs in social care is rising. This has a knock-on effect on the NHS as a whole, as up to one in three hospital beds in the UK are reportedly occupied by people waiting to be discharged into care.

The steady rise in social care vacancies since 2012 underscores the fact that the present lack of staff is not a blip caused by the pandemic. It is due to longstanding structural problems that require urgent funding to bring the sector back from the brink of collapse.

[See also: The legislative battles to watch in 2023]

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