People with dementia in Wales face ‘perfect storm’ as rising costs mean one in ten is cutting vital care and support, warns Alzheimer’s Society Cymru

Survey reveals those living with the condition face ‘devastating’ isolation as they cut crucial support in the face of rising costs

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

The charity reports that amongst those struggling with cost of living pressures, nearly one in ten 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 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’s 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 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.

Jolian Ardolino, Alzheimer’s Society Cymru Area Manager, 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 ten in Wales are choosing to reduce or even stop vital social activities and one in ten have reduced or stopped using social care.

“Alzheimer’s Society Cymru is calling for the full implementation of the recently published Towards a National Care and Support Service in Wales – Expert Group Report  recommendations, to make care free at the point of need and to increase the involvement of people affected by dementia in the design of the National Care and Support service.”

“While we appreciate the additional investment for social care announced by the Chancellor recently, and the consequential funding which the Welsh Government will receive as a result of this announcement, we are asking the Welsh Government use some of the funding as soon as possible, to ease the current pressure in social care. 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.”

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, and 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. 

Martin Pryce-Gill (55) who grew up in Wales and whose mother recently moved into a care home in Newport said,

“My father passed away from dementia five years ago, and my mother who is now 94, was recently diagnosed with rapid onset Alzheimer’s. This news was a devastating blow to the family, given the similar condition with my dad, except his progressed slowly over some 18 years.  I video-call mum every day, and it’s terrible seeing little pieces of her essence, slowly being shaved away.  It’s not even from visit to visit where a week or so has passed, sadly, rapid means rapid.  It’s a lot to cope with as a family, but you pull together, and we each do what we can. In addition to that, there’s trying to calculate spending accurately, to keep a roof over everyone’s head, with the cost of fuel and food rocketing, it’s so stressful, as every penny spent has a significant impact to something else it was being used for.  The cost of living crisis, is definitely  crisis, and adds another devastating blow, at an already difficult time financially.

“Mum has only recently moved into the nursing home in Newport, this was following a series of falls at home.  Most of mum’s conversations now, are based around money. Mum worries about how much things cost, and how we are all going to manage. All we, as a family want, is for mum to have no additional stress at such a challenging time for her personally. Unless we specifically ask for her not to see or hear the news, it’s impossible to keep the rising prices a secret from her. She often asks in her more lucid moments, if she has enough to pay for everything without being a burden to us, and that’s really upsetting.”

“As a family we are in unenviable position of having to pay for her care, while her home is on the market (to cover her costs). With winter coming we still need to pay the utilities on her home until it sells; on top of managing her care fees, as well as our own rising costs, all of which impacts on our ability to visit her.  Her care home is the most wonderful place, but they have no choice but to increase costs, as their costs have increased also. The cost of travel has also gone up, which has had an impact on how often I can get back to Newport from London. I feel as if as I am spinning plates, to try and make ends meet.  It’s terrible that we are together less because of this, particularly at a time of year when families traditionally come together.”

The national 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.

Jolian Ardolino, Alzheimer’s Society Cymru Area Manager, 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 Cymru 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.”

If you are affected by dementia and need help, call Alzheimer’s Society’s support line on 0333 150 3456/Welsh speaking line 03300 947 400  or visit alzheimers.org.uk/costofliving