The bigger picture
When care arrives in a family’s life, it can feel like you’re the only ones going through it. You’re not. Millions of UK families are on this same journey right now, and because so many need support, real support exists. Here’s the honest picture, and where each part of it leads.
Living with dementia
A dementia diagnosis changes life for the whole family. It’s also one of the most common journeys in the UK today, which means the paths through it are well worn, and well signposted.
982,000
people are living with dementia in the UK
That’s nearly a million families learning as they go, and a whole network of NHS services, memory clinics and charities built precisely because so many people need them.
What to do after a diagnosis →1.4 million
people are expected to be living with dementia by 2040
The number is growing because we’re living longer. Planning early, legal, financial and care decisions made calmly, in good time, is the kindest thing a family can do for its future self.
Start planning ahead →7 in 10
care home residents have dementia or severe memory problems
If you’re choosing a care home for someone with dementia, you’re not asking for something unusual. It’s the very thing most homes are set up to do. Knowing what to look for makes all the difference.
How to choose a care home →Not just an older person’s condition
For some families, a diagnosis arrives decades earlier than expected. Young-onset dementia, symptoms starting before the age of 65, is less talked about, but it’s real, recognised, and more common than it can feel in the moment.
70,800
people in the UK are living with young-onset dementia, diagnosed before the age of 65
Symptoms can start in someone’s thirties or forties. If your family’s experience began far earlier than you expected, you’re not imagining how different that feels, and you’re not the only ones living it.
Understanding a diagnosis →2 to 5
different specialists many people see, on average, before a young-onset diagnosis is confirmed
Symptoms in younger people often look different, changes in behaviour or language rather than memory, which is why doctors don’t always think to look for dementia first. A long, confusing road to diagnosis is common. It’s not a sign anything was missed by you.
What to do after a diagnosis →Under 65
is how young-onset dementia is defined, though symptoms can start well before that
It’s a recognised, named category, not a rare exception, and dedicated support exists specifically for younger families, including specialist Admiral Nurses and the Young Dementia Network.
Find support for your family →The people who care
Most care in the UK doesn’t happen in hospitals or care homes. It happens in kitchens and living rooms, given by husbands, wives, daughters and sons. Most of whom never expected the role, and many of whom don’t yet call themselves carers.
5.8 million
people in the UK are unpaid carers
If you’re looking after a parent or partner, you belong to one of the largest communities in the country. Support, respite and benefits exist specifically for you. The first step is recognising the role you’re already doing.
Where to start as a new carer →12,000
people become unpaid carers every single day
Today, thousands of families had the same conversation yours may be having. A fall, a diagnosis, a hospital call. Feeling unprepared isn’t a failing. Nobody gets a rehearsal. But there is a first calm step to take.
Get the 10 calm first steps →2.6 million
people have given up work to care for someone
Juggling a job and caring is one of the hardest balances there is, but you have legal rights to carer’s leave and flexible working, and ways to talk to your employer before it reaches breaking point.
Balancing work and caring →The cost of care
Money is the part of the care journey families most dread talking about, and the part where the right information makes the biggest difference. The system is complicated, but it is a system, and it can be understood.
£184 billion
the yearly value of the care unpaid families provide across the UK
That’s roughly equivalent to a second NHS. Provided quietly, out of love. If that’s you, what you’re doing has enormous value. Make sure you’re getting the support you’re entitled to in return.
Find support for carers →Nearly half
of care home residents fully fund their own care
Whether the council contributes depends on a means test, and understanding the thresholds before decisions are made can save families thousands of pounds and a great deal of worry.
Care funding, explained simply →1.7 million
carers provide 50 or more hours of care every week
Caring at this intensity without support isn’t sustainable, and you shouldn’t have to. A free Carer’s Assessment from your local council is the doorway to respite, equipment and practical help.
What to expect from social services →A moment for you
Statistics are one thing. Lisa shared her family’s real story with us, a dismissed diagnosis, a wrongly refused PIP claim, and how they fought it. It’s the clearest answer to why any of these numbers matter.
The Care Compass exists to bring clarity, confidence and compassion to this journey. Start wherever you are. We’ll help you find the next step.
Find your stage of the journey Get the free first-steps guide
We only publish figures we can stand behind. Every statistic on this page comes from the sources below, and we review them regularly as new data is published.
The Care Compass