Holly Braithwaite’s daughter, Alba, was just one when her mother was diagnosed with frontotemporal dementia, a rare condition that causes personality and behavioural changes.
Unlike some other forms of dementia, it mostly occurs in people aged between 45 and 65 and can affect people when they are even younger.
The lack of funding for social care to meet the needs of Ms Braithwaite, now 35, forced her out of her family home, her husband Alex Braithwaite told i.
i has learned that social care assessments for younger people with dementia are not identifying their needs, leaving young adults being treated by Older People’s Services as there is no targeted provision for them.
Speaking about the challenges the family have experienced in accessing appropriate social care provision, Mr Braithwaite, a teacher, said: “Ever since her diagnosis, Holly doesn’t tick the box for anything. She doesn’t really fit anywhere. Mental health passed us on to older persons because of the dementia.
“Initially we were trying to find a care provider that could provide care in the home, that was deemed not possible due to a lack of carers.”
The majority of the roughly 900,000 people with dementia in the UK are aged 65 and above. But more than 42,000 people are living with early onset dementia, which refers to the development of the condition before age 65.
Services for most people with dementia, such as memory cafes, day centres and care homes, do not cater specifically for the needs of younger people with the condition, many of whom don’t initially experience memory loss and maintain their levels of intellect for a considerable time.
But when it became unsafe for Ms Braithwaite, a former letting agent, to remain in the family home, Mr Braithwaite battled to secure adequate help for his wife.
“There was a stage for about six months where we would have the same meeting [with local authorities] every Wednesday,” he said. “Every single week the same thing and there was just a block somewhere and we could never get to who was blocking the funding, why we couldn’t get what we needed.”
Eventually, Mr Braithwaite found a residential care facility with a bungalow where his wife could stay and receive treatment. It meant he and Alba, who is now three, could spend time with her privately.
But funding for the facility was cut shortly after Ms Braithwaite moved in and she was moved back onto a hospital ward.
Mr Braithwaite and Alba could only visit her in the hospital’s family room, and because over stimulation exacerbates her symptoms, Ms Braithwaite would sometimes be able to meet them for just two minutes before she would need to leave.
Today, Ms Braithwaite lives in a residential facility with on-site nursing staff. The set-up means Mr Braithwaite and Alba can visit and spend time with her “like a normal family”, he said. He remains frustrated by the time the family missed out on because of funding cuts.
“We had 11 months of what seemed to be battling with people over money, over access to places,” he said. “We don’t have any timescale on how long we’ve got with Holly.
“My big concern and the family’s concern is that we’ve missed out on 11 months of family life with Holly. Holly is a mum, she’s a wife, she’s a friend, she’s a daughter – we couldn’t do normal things that you’d do.
“The label of dementia doesn’t cover someone with a child like Holly. It’s trying to get through to the decision makers to look at the person and not the diagnosis.”
Anita Goundry, 55, was diagnosed with dementia five years ago, over a decade after she first experienced dementia symptoms.
“I’ve had cats all my life but I forgot the word cat… everybody thought this was funny but there were lots of words that I couldn’t remember. I lost over half my vocabulary,” she told i.
Before she was diagnosed with dementia, Ms Goundry’s symptoms were put down to the menopause, hypochondria and even hysteria. She lost her job working with the Probation Service, and eventually her home and partner too.
“I went from working on a pretty good salary, to being unemployed on universal credit,” Ms Goundry said. “I became suicidal. I lost my job, my career, I lost friends. I’d lost my partner, he’d become my carer and financially, we were struggling.”
At the time, Ms Goundry had a mortgage, household bills and a teenage daughter and older son to support.
Because she was forced to leave the workforce early, she is unable to claim her pension or continue paying into it and faces an almost 20-year wait before she can access the full entitlement of state pension funds.
Ms Goundry said that she believes she would not have felt suicidal had greater support been available.
“My income a month is less than my outgoings, so every month I get behind by about £110 because of my bills, and I’ve got no way of making it up,” she said. “By this time next year will I be in my bungalow?”
Without financial support to help her stay in her home, Ms Goundry is faced with the prospect of being moved into sheltered accommodation.
“That will kill me because then again I’m surrounded by old people and I don’t have the social network that I do now,” she said.
Because of the lack of targeted support for younger people with dementia where she lives, she is planning to set up an organisation to signpost support to those with the condition and their carers.
“The diagnosis process is terrible. You got 20 minutes to be told that you’ve got Alzheimer’s and vascular dementia,” she said. “If it hadn’t been for the Alzheimer’s Society and finding their number and ringing them at the lowest point in my life, I wouldn’t be talking to you.
“I wouldn’t have had any hope whatsoever.”
Morgan Griffith-David, policy manager at the Alzheimer’s Society, said a lot of services for people with dementia are not universal, and can mean that people get a “bare minimum” level of support.
“The system as it is isn’t set up well for personalising care for anyone,” he said. “Some regions will have specific services for people affected by dementia who are younger than 65, others will not. That’s unacceptable and has to change.
“We need more commissioning more funding for these services so that everyone has someone to turn to.”
Rare Dementia Support (RDS) is one of the leading charities providing emotional and practical support to people with younger onset dementia.
Nikki Zimmermann, direct support lead at RDS, said: “The symptoms for all these rare forms of dementia are quite different but what they have in common is that they can affect younger people, usually forties, fifties and sixties, but we also see people in their twenties and thirties.
“The challenges also differ compared to a dementia diagnosis in an older person. These are people who are working, have families, mortgages to pay, and their lives are completely turned upside down.”
“They will often have to take early retirement on medical grounds. This is an area where we at Rare Dementia Support do a lot of work.
“We help our members to talk to their employers and we help employers to make reasonable adjustments and go through the process of early retirement on medical grounds to avoid the person losing their job due to inability to continue carrying out their roles.”