Families plead for help in 'cruel' dementia battle

Families of loved ones with dementia have described the challenges they face navigating a system they say offers "no support" after diagnosis. Andy Burnham on Tuesday announced plans to create a new national care service after his late father's experience.

"You see the person slipping away from you, but you know they're going to slip away to a stage that's even worse," said Jo Earlam, from Devon, who cared for her husband John for almost a decade.

"Dementia is a sad and cruel disease."

After receiving his diagnosis in 2017, Jo looked after her husband at their home in Tipton St John until July this year when he moved to a care home as his needs became too great.

John was a "very capable man" who ran his own business as a chartered surveyor, raced rally cars and had a pilot's licence, said Jo.

But "ultimately it's been a downward trajectory" since his diagnosis, she said.

"There are good bits in all of the stages [of dementia] if you kind of find them, and I've got really happy memories," she explained.

"But the difficult parts get more difficult, more challenging."

It is a familiar picture across the South West with the latest NHS figures showing the number of dementia diagnoses in the wider region rising from 57,532 in March this year to 57,713 in June - an increase of 181.

For the four local authorities with responsibility for social care in Devon and Cornwall, the numbers reflect the trajectory with each seeing a rise.

Nationally the outlook is similar, with the number of those with a dementia diagnosis in England increasing from 513,135 people in March to 516,230 in June.

Despite the rising number of people affected by the illness, families and charities said not enough had been done to provide support.

Jo said she had experienced "carer burnout" caring for her husband at home.

With John now in a care home only minutes from where she lives, she said things had improved, but it has taken a financial toll.

She is able to remain in their home thanks to legislation that protects spouses from losing their house, but much of what they had in savings has gone towards John's care.

Jo said she understood that was the way the system operated but there was so much more apart from finance that needed to improve.

"The thing about dementia is there's no NHS pathway, there's no support, really," she explained.

"You get your diagnosis, and it's just... nothing. There's help from charities and support there, and help within the community, but there's not a structured pathway through the NHS."

Ellen Morgan, from Cornwall, knows the system well through her work as a care adviser for a charity.

On top of that she looked after her late mother Margaret who had dementia.

"It was really hard work," she said.

"I wouldn't have had it any other way, but it was hard.

"You know it's not going to get better, it's just going to get more intense.

"It's emotionally exhausting, physically tiring and with dementia you have constant grief for the person you're seeing slip away."

Morgan said she cared for her mother for more than three years before making the difficult decision to move her into a care home.

"It was the only choice - the right choice - but it wasn't an easy choice," she said.

"We found a home that suited mum. She took pride in her appearance and the home reflected that, but it still hurt."

Aside from the emotional fallout, Morgan said the administration and bureaucracy she faced was difficult.

"There needs to be more streamlining between health and social care," she said.

"You get your diagnosis from the NHS... but then you have to repeat the same story again to social care – and two teams don't seem to talk to each other.

"We're already stressed trying to deal with our loved one's health condition... and now we have to navigate two massive systems."

After seeing services close for those with dementia, retired mental health nurse Heather Penwarden is among the volunteers who have stepped into the breach.

She set up the Honiton Memory Cafe to offer people with dementia and memory loss a social outlet.

"At this point in somebody's journey through dementia there's really nothing else - until people are really struggling and then maybe the statutory services can kick in," she said.

"There's very little for people to connect with others and keep the confidence to go out and live life."

Seventeen years ago Honiton was one of the first memory cafes in Devon - now there are 55 across the county and more than 40 in Cornwall.

Wendy and Gordon Rawlins started coming to the Honiton Memory Cafe three years ago after seeing an advert in the local newspaper.

Wendy had just been diagnosed with early stage dementia and the couple were feeling isolated.

"We weren't given much support at all [from the NHS]," said Gordon.

"We were just sent home - we were in limbo really."

Wendy added: "Here means someone you know that you can go to if you don't understand something, or what to do."

Gordon agreed the initiative had been a "great help".

He said: "You come here, we talk to people, they're all friendly. They're in the same situation as what you're in and it sort of helps. It takes the pressure off."

On Tuesday the prime minister said the creation of a new national care service would be a "landmark policy" for him.

Burnham, whose father and grandmother both spent time in care homes before their deaths, said the free to use service would provide the only credible answer to the crises facing the NHS.

Michelle Dyson, chief executive of the Alzheimer's Society, responded: "Families have been pushed to breaking point by patchy support and impossible choices about how to care for someone they love.

"From his personal experience Andy Burnham, like the millions of people across the UK affected by dementia, understands why people can no longer be asked to wait for change."

Sitting with her husband John in his care home, Jo agreed reform of the system was urgently needed.

"My gran had dementia 50 years ago – it shocks me the prognosis is the same now as it was then," she said.

"How is it possible that there are still no solutions?"

Despite the difficulties, Jo said knowing her husband was "safe and well" was important to her.

The care he received meant they were able to share precious time together, she said.

"We have nice times together now, John, don't we?" she said.

"We do," John said, nodding in agreement.