People with dementia in Sussex face ‘perfect storm’ as rising costs mean one in seven are cutting vital care and support

People living with dementia in Sussex are facing a ‘perfect storm’ of rising care and living costs that will leave many stranded in their own homes over Christmas, warns Alzheimer’s Society.

While the cost of living increase impacts almost everyone, people with dementia face additional pressures as many must pay for their own care, unlike those with other conditions that are treated by the NHS.

A new Alzheimer’s Society survey of 1,166 people affected dementia from across the UK reveals that fees have risen on average £1,200 a year for residential care, home care and day care.

It is estimated people with dementia spend an average of 22 hours a day at home. In a bid to reduce costs, the charity’s national survey revealed one in four who are struggling with rising cost of living are retreating into one room to save on energy bills, leaving them at risk of devastating isolation which could see their condition worsen.

Kate Lee, CEO at Alzheimer’s Society, said: “The rising cost of living has left people with dementia facing a perfect storm of rising care costs, leading many to reduce their care services and social activities while also struggling to heat their homes.

“Christmas is usually a time of joy and togetherness, but for many people living with dementia it will be desperately lonely this year, with many isolated in their own homes. No-one should have to choose between heating their home or getting the care they need.

"But as people with dementia face rising care costs, more than one in seven across Sussex are choosing to reduce or stop social activities, while one in ten reduced or stopped using social care.

“We were disappointed that Government has delayed the care cap for two years, which would have set an £86,000 limit on what people contribute to their own care. This was a first step towards tackling crippling care costs, at a time when people with dementia are facing even bigger bills.

"As we approach the difficult winter ahead, a long-term solution is needed to fix our broken care system and deliver the quality, affordable care people with dementia deserve. Many with dementia already feel isolated and this winter it is going to get worse.”

The findings reveal many with dementia will spend most of their time indoors over the festive season, meaning they will need to use more heating and lighting to stay safe and well. More than half (53%) of those surveyed who live in their own home said they either don’t leave or go out for less than an hour a day, and 45% of who live alone said they never go out.

Spiralling care fees are also forcing many to cut back on other essentials. Living fees have risen by an average of £23.20 per week for people with dementia in sheltered housing, supported living or residential care homes.

Fees for private home care services, support groups and day care for people with dementia have increased by an average of £22.91 per week, while 13% face a weekly rise of more than £40.

The survey also revealed:

• Two in five households with someone living with dementia said they have struggled to pay at least one bill in the last month.

• One in four say they have struggled to pay their utility bills.

• One in five have struggled to pay for food and drink.

Dementia is one of the main causes of disability later in life, ahead of cancer, cardiovascular disease and stroke. Two-thirds of care costs are currently being paid by people with dementia and their families, either in unpaid care or in paying for private social care.

This is because unlike the NHS, social care of which people with dementia are the biggest users, is means-tested.

If you are affected by dementia and need help, call Alzheimer’s Society’s support line on 0333 150 3456 or visit alzheimers.org.uk/costofliving