People with dementia face ‘perfect storm’ as rising costs mean one in ten is cutting vital care and support

People living with dementia 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.

The charity reports that amongst those struggling with cost of living pressures, nearly one in seven is cutting down on vital social activities, and one in ten is cutting down or stopping their social care, leaving them at real risk of crisis this winter.

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

A big impact on people affected by dementia

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.

We know that people with dementia spend a lot of time at home, an average of 22 hours a day.

In a bid to reduce costs, one in four who are struggling with the 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, Chief Executive Officer 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 crucial care services and social activities, while also struggling to heat their homes.'

'For people with dementia, cold and isolation can have a devastating impact on their condition, leaving them at real risk of crisis this winter.'

Christmas for most of us is a time of joy and togetherness, but for far too 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, almost one in seven are choosing to reduce or even stop vital social activities and one in ten have 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.'

'We appreciate the additional investment for social care announced recently by the Chancellor but as we approach the difficult winter ahead, we need a long-term solution to fix our broken care system and deliver the quality, affordable care people with dementia deserve.'

Rising care costs

The findings also reveal many people 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 home at all or go out for less than an hour a day.

45% of people living with dementia 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 (£1,206.40 a year) for people with dementia in sheltered housing, supported living, a residential care home or nursing home, with more than one in ten (12%) facing a weekly rise of more than £40 (more than £2,000 a year).

Meanwhile, fees for support services such as private home care services, support groups, and day care for people with dementia have increased by an average of £22.91 per week (£1,191.32 a year), with one in seven (13%) facing a weekly rise of more than £40.

Louise Woollam, 59, of Shillingstone, Dorset, cares for her husband Richard, 75, who is living with Alzheimer’s disease. Louise said:

'Richard has really begun to feel the cold so the increase in fuel bills to keep him at a comfortable temperature is phenomenal. I’m also having to use the washing machine and tumble dryer more due to accidents and spillages caused as a result of his condition, so our bills have risen substantially.'

Louise, a flight attendant, faces the additional burden of funding care costs for Richard so she can continue working. She added:

The price for carers while I am work is crippling. I can’t earn enough to cover the fees while I'm working, but I can’t give up my job to care for him myself as I could not exist on Carer's Allowance.

'At 59, I still need to pay into my own pension, so it’s a catch-22 situation.'

Further findings

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. 

Kate Lee, Chief Executive Officer at Alzheimer’s Society, added:

People with dementia can already feel abandoned and isolated and this winter it is set to get worse. No one should have to face dementia alone.

Alzheimer's Society is here to support people at this difficult time and we're asking anyone in a position to donate to help us continue to offer vital services this winter.