Nearly half of people looking for immediate care are in desperate need of a care home specialising in dementia care, according to new data released by carehome.co.uk, the leading care home reviews site, to mark World Alzheimer’s Month.
carehome.co.uk receives over 15 million annual visitors and has helped over a million families find care. An analysis of 39,980 care seekers sending email enquiries from 1 September 2023 to 31 August 2024 shows nearly a fifth (19%) were looking for urgent, immediate care with a timeframe of within the next 24 hours up to a week. Nearly half of these (46%) people needed dementia residential and nursing care.
In total 44% of all care seekers were looking for dementia residential and nursing care.
Scotland saw the highest amount of care seekers (50%) requiring a dementia care home. Northern Ireland was also high at 47%. England had 43% of care seekers looking for a dementia care home, with Wales the lowest at 42%.
The findings highlight the desperation many with dementia face when looking for care, with around 300,000 people currently living in a residential or nursing home in the UK having some form of dementia.
In response to the findings, carehome.co.uk is urging Brits to plan ahead to ensure they don’t run round in a panic making a rushed decision when looking for care.
Over 70% of care home residents live with dementia according to the Alzheimer’s Society, but 44% of all enquiries to carehome.co.uk are related to dementia care. These findings suggest that many people have not been diagnosed with dementia before they enter a care home.
Paulina Frisby, team leader at carehome.co.uk’s care helpline, has found this to be the case when speaking to care seekers.
She said: “We have people ringing up about their mum or dad saying they think they have dementia but they are too scared to visit the GP and get a formal diagnosis or they simply can’t get an appointment.”
“We find when we speak to people who are looking for a care home for their family or partner with dementia, there is a lot of frustration. There is still such a misunderstanding of dementia and many people are given a diagnosis and then left with no support.
“We get people ringing us who are very distressed about a relative of theirs who has dementia. They tell us how ‘horrible’ it is and they cry when they are talking to us. It can be very distressing and emotional for us and if we connect with them we can end up crying on the phone when they are talking to us.”
carehome.co.uk ‘s data also shows the burden of looking for dementia care often falls on partners or children. Over half of those looking for care for their partner (53%) and parent (46%) are searching for a specialist dementia care home.
Shelle Luscombe, Alzheimers’ Research UK’s volunteer, spoke out about her parents’ dementia diagnosis
She called it “soul destroying, heartbreaking, bewildering, upsetting and frustrating” and said it was also “a steep learning curve! You’re constantly trying to be one step ahead because decline with dementia isn’t linear.
“Mum was in denial of her diagnosis which made it really challenging. She wouldn’t accept support or help, and struggled to acknowledge there was something wrong with her. She was often angry and stubborn and I’m sure very scared.
“She’d been so fiercely independent all her life that it was difficult for her to accept that there were things she could no longer do. It’s an up and down journey, so one day all the neurons are firing in the right places; the next, you can’t work out which way up to hold the telephone. That’s really hard to watch.”
Both of Shelle’s parents ended up in a care home.
“The home that Dad was in was great. It ticked all of those boxes and the staff were lovely. When he sadly passed away three months later, they were really supportive of us as a family. I couldn’t fault the way they took care of Dad; they were kind, gentle and respectful.
“Like Dad’s, the nursing home I chose for Mum had to be purpose-built with wide corridors and doors and lifts. Just like when I chose Dad’s nursing home, I wanted somewhere where the staff really cared and listened to me. I wanted them to know Mum’s name and things about her. It was also important that they understood dementia.
“Mum was in the nursing home for 2 ½ years and there were some challenges but mostly they did brilliantly. So well in fact, that her health stabilised.
“The home had an open-door policy for family members which was amazing and when it came to the end, they allowed me to set up camp in Mum’s room and sleep alongside her on the floor for three days and nights. They really looked after me and Mum.”
Sue Learner, editor at carehome.co.uk, said:
“This year’s World Alzheimer’s Month is a valuable opportunity to talk about improving dementia diagnosis rates. A diagnosis gives people vital access to treatment and support and also helps them make arrangements for their future care.
“Deciding when someone with dementia needs to move to a care home can be challenging and emotional, but if you do your research ahead of this and have a plan in place it can alleviate some of this stress.
“Our care helpline staff receive distressing calls on a daily basis from partners and families struggling to cope with this cruel and debilitating disease.
“The number of people with dementia in the UK is predicted to rise to over a million by 2030. So it is crucial the government takes action to improve diagnosis rates across the UK and prioritise funding so people affected by this terrible condition get the help and support they desperately need.”
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