The "Waiting Room" of Life: Why We Need Care, Not Just a Cure

Hello everyone. I’m writing this because sometimes I feel like I’m standing in a very long queue that doesn't seem to move. When you get a diagnosis of dementia, they tell you to "live well," but they don't always give you the map to find the way. This sense of being lost can be overwhelming, especially when you're faced with a condition that affects not just you, but your loved ones and the world around you.

I am part of a growing army. This year, 2026, the number of people living with dementia in the UK has officially hit the one million mark. To put this into perspective, consider that just a few decades ago, the number was significantly lower. The rapid growth is a stark reminder of the challenges we face as a society. By 2040, that number is expected to reach 1.6 million. We aren't just statistics; we are people trying to navigate a world that is becoming increasingly blurry.

It's easy to get lost in numbers, but behind each statistic is a story, a family, and a life. Imagine waking up each day, not knowing what the day will bring or how your memories will serve you. Simple tasks become monumental challenges. Everyday conversations turn into complex puzzles. For many of us who are living with dementia, the world can become a confusing and often frightening place.

When we receive a dementia diagnosis, the advice we’re often given is to "live well." But what does that really mean? How do you live well when your memory is fading, and your sense of self is changing? The lack of clear guidance and support can leave many of us feeling isolated and unsure of our next steps.

So, where’s the map to help us navigate this journey?

It starts with understanding, empathy, and comprehensive support systems. For those of us living with dementia, it's crucial to have access to resources that cater to our needs, from healthcare and social services to community support and understanding.

Creating a supportive community involves educating the public about dementia, reducing stigma, and fostering an inclusive environment. It's about turning the spotlight on the experiences of those living with dementia and their families, and amplifying their voices.

As the number of people living with dementia continues to grow, so does the need for action. We need to advocate for better support systems, more research, and a greater understanding of the condition. By working together, we can create a world that is more inclusive and supportive for everyone.

Living well with dementia is not just a slogan; it's a goal that requires effort, understanding, and resources. It's about creating a life that, despite the challenges, is rich in experience, connection, and joy. It's about finding ways to adapt, to cope, and to thrive in a world that is constantly changing.

The journey with dementia is unique for each person, but it's a journey that no one should have to take alone. By sharing our stories, offering support, and advocating for change, we can make a difference. We can create a world that is more compassionate, more understanding, and more inclusive for everyone.

But to do that, we need places to get together. Places where we can  find friendship, support and form a community.

Standing in a long, seemingly endless queue for a vacancy in a dementia group can be frustrating and disheartening, but it's the norm for many thousands of us. How can we find strength in the community around us when we have no means of entering it?

For those living with dementia and their loved ones, the journey ahead may seem daunting, but with the right support, resources, and mindset, it's possible to navigate the path with courage, resilience, and hope.

The Reality of the "Waiting Game"

Getting a diagnosis is the first hurdle, and it’s getting higher. Recent figures show that while the average wait from a GP referral to a specialist diagnosis is around 18 weeks, in many parts of the country it has stretched to two years.

Imagine knowing something is wrong, feeling the ground slip away, and being told to wait two years just for a name for it.

• Diagnosis Rates: Only about 65% of people estimated to have dementia in England actually have a formal diagnosis.
  

• The Support Gap: Only 28% of people who do get diagnosed find the support they receive afterwards actually helpful.
  

• Signposting: A staggering 72% of people receive no information or "signposting" to support while they are stuck on those long memory clinic waiting lists.

We Need Groups, Not Just Labs

There is so much talk about the "miracle cure" on the horizon. Don’t get me wrong, I want that for the next generation. But for those of us living with it today, a lab result ten years from now doesn't help me get through Tuesday.

Waiting lists for local support groups and "memory cafés" are at an all-time high. These groups are our lifelines. They are where we find people who understand why we’ve forgotten a word or why we feel overwhelmed in a supermarket.

"We are spending a huge amount of energy looking for a way out of this room, while forgetting to provide enough chairs for the people who have to live in it right now."

Services like Singing for the Brain do more than just provide a song (they stimulate memory, reduce isolation, and help us accept our diagnosis through the power of rhythm and community). These groups promote health and wellbeing, keeping us active and social.

The Unpaid Army: Our Carers

My "army" includes a massive force of unpaid carers, usually family members. They are the ones holding the system together.

• The Burden: One in three unpaid carers spends more than 100 hours a week providing care.
  

• The Toll: Around 42% of carers say their own physical health has suffered because of their role.

When support groups are full or non-existent, the weight falls entirely on them. We are putting too much stress on research and not enough on the "here and now" infrastructure that keeps families from breaking.

A Call to Action: Invest in the Present

I am calling on our national government, local councils, and major dementia charities to look at us (the people living with this right now). We need more than just hope for a future cure; we need help today.

• To the National Government: Stop treating social care like a secondary thought. The £4.6 billion promised for adult social care by 2028 is a start, but we need immediate investment in community-based "prevention" services to stop families from reaching breaking point.
  

• To Local Government: Prioritise the funding of dementia cafés and social prescribing. These aren't "nice-to-haves," they are essential medical support that keeps us out of the hospital.
  

• To Charities: Keep bridging the gap, but also keep pressing the government to make these services a right, not a "lucky dip" depending on where you live. Get closer to your local communities.

We are here, we are many, and we deserve more than just a place in a waiting room.