The Care Home I Deserve

Introduction: Why I'm Writing This

I live with dementia. That sentence still feels strange to write, even now, almost seven years after my diagnosis. It's not something I ever expected to say about myself, and it's certainly not something I ever wanted. But here I am — still me, still thinking, still feeling, still caring deeply about what happens next.

And because I'm still me, I'm not willing to sit quietly while decisions about my future are made without me. Too often, people with dementia are spoken about, not spoken with. We're treated as passive recipients of care rather than active citizens with rights, preferences, and expertise born from lived experience.

This document is my attempt to change that.

I want to talk about the kind of care home I want to live in if the time comes. Not because I'm giving up — far from it — but because planning for the future is an act of strength, not defeat. And because the care home I imagine isn't just for me. It's for every person living with dementia today, and for every person who will receive that diagnosis tomorrow.

This is a manifesto for dignity.

 A manifesto for joy.

 A manifesto for real, meaningful change.

And it starts with a simple truth:

We deserve better.

1. Home, Not Institution: Why Environment Matters

Let me begin with something obvious but too often ignored: a care home should feel like a home. And let me be clear, many care homes do precisely that. They punch above their weight, providing an excellent environment full of love and care. Sadly, many still don't, and a few I've visited left me feeling like an extra in the movie "One Flew Over the Cuckoo's Nest"!

So, I repeat. A care home should feel like a home.

Not a hospital.

 Not a hotel.

 Not a corridor of identical doors and polished floors.

 A home.

When you live with dementia, the world can become confusing, disorienting, and overwhelming. A poorly designed environment doesn't just make life more complicated - it can make it frightening. I've walked into buildings where the lighting was harsh, the signage was tiny, and the layout felt like a maze. Within minutes, my anxiety shot up. My confidence drained away. I felt small.

Now imagine living in that environment every day.

A dementia‑friendly care home must be designed with intention and compassion. That means:

• Warm, familiar colours instead of clinical whites and greys

• Clear signage with pictures as well as words

• Circular corridors so I don't get stuck or embarrassed

• Personalised doors that help me recognise my own room

• Quiet spaces where I can retreat when the world feels too loud

• Natural light that helps regulate my body clock

• A safe, accessible garden where I can wander freely
  

These aren't aesthetic choices. They're psychological lifelines.

When the environment supports me, I feel calmer. I feel safer. I feel more like myself. And when I feel like myself, I can participate in life instead of shrinking from it.

This is why design matters.

 This is why environment matters.

 This is why we must demand better.

2. Seeing the Person: The Heart of Good Care

If I could change one thing about the care system, it would be this: I want to be seen.

Not as a diagnosis.

 Not as a set of symptoms.

 Not as a problem to be managed.

 As a person.

A whole person.

 A person with a history, a personality, a sense of humour, a lifetime of memories — even if some of them are harder to reach now.

Good care starts with relationships. It starts with staff who take the time to know me, not just care for me. It starts with people who understand that dementia affects each of us differently, and that my needs today might not be the same as my needs tomorrow.

I want staff who:

• Speak slowly but respectfully

• Give me time to answer

• Understand that frustration is often fear in disguise

• Recognise that behaviour is communication

• Ask me what I want, even if I struggle to express it

• See my strengths, not just my challenges
  

This requires training.

 It requires time.

 It requires proper staffing levels.

 It requires investment.

And that means policymakers and providers must stop pretending that good dementia care can be delivered on a shoestring. It can't. Underfunding doesn't just lead to poor care - it leads to suffering.

We deserve better than that.

We deserve care that sees us.

We deserve care that honours our humanity.

3. A Life Worth Living: Meaningful Activities and Daily Purpose

Let me be clear: I don't want to spend my days sitting in a chair staring at a television I'm not watching.

I want to live.

I want to do things that matter to me. I want to feel useful, creative, connected, and alive. Dementia may change how I do things, but it doesn't erase my need for purpose.

A great care home should offer:

Music

Music reaches parts of the brain that dementia can't touch. A song from my youth can unlock memories I thought were lost. It can lift my mood, calm my anxiety, and make me feel like myself again.

Art and Creativity

Painting, drawing, crafting — these aren't childish activities. They're ways of expressing what words sometimes can't. They're ways of staying connected to the world.

Gardening

Let me plant something. Let me water something. Let me watch something grow. Gardening gives me a sense of continuity and hope.

Storytelling and Reminiscence

Bring out old objects, photos, scents. Let me tell my stories - even if they come out jumbled. My memories matter.

Movement

Gentle exercise, tai chi, dancing in chairs — anything that keeps my body moving and my spirits lifted.

Community

I want to feel part of something. I want shared meals, shared laughter, shared moments of connection.

Choice

Most importantly, I want the freedom to join in or not. Activities should be invitations, not obligations.

A care home should never feel like a waiting room. It should feel like a place where life continues. Differently, perhaps, but still richly.

4. The Garden: Freedom, Not Confinement

A garden is not an optional extra. It is essential.

When you live with dementia, the world can feel smaller and smaller. A well‑designed garden gives that world back to you. It offers freedom without fear, independence without risk, and joy without confusion.

I want:

• Looping paths that bring me back to where I started

• Flowers I recognise from my childhood

• Benches in sunny and shady spots

• Birds, bees, and the sound of life

• Raised beds where I can plant herbs or vegetables

• A place to sit with a cup of tea and breathe.
  

A garden is therapy.

 A garden is memory.

 A garden is dignity.

Every care home should have one.

I've visited care homes where the garden can be seen, but not used. The door to the garden is locked because one of the residents wanders.

Well, I'm sorry, but it is not acceptable to me that EVERY resident is denied access to a facility because the staff cannot manage the behaviour of one!

5. Community, Connection, and the Right to Belong

A care home should be a community, not a corridor.

I want:

• Small, cosy lounges instead of one big noisy one

• Spaces where families feel welcome

• Children running around without being shushed

• Pets that are part of the everyday life of the home

• Staff who have time to chat, not just complete tasks

• Celebrations, birthdays, seasonal events

• A sense that life is happening around me, not just to me
  

Loneliness is one of the greatest threats to people with dementia. A care home should be the antidote, not the cause.

6. Rights, Not Favours: The Policy Case for Change

Now let's talk about the system.

Too often, dementia care is treated as an afterthought - underfunded, undervalued, and misunderstood. But dementia is not a niche issue. It is one of the defining health and social care challenges of our time.

We need:

• National standards for dementia‑friendly design

• Mandatory training for all care staff

• Fair pay to reduce turnover and improve continuity

• Investment in community‑based support

• Regulation that prioritises quality of life, not just safety

• Co‑production with people living with dementia at every stage

This isn't about luxury.

 This isn't about special treatment.

 This is about human rights.

People with dementia deserve the same dignity, autonomy, and quality of life as anyone else. And that requires political will.

We must demand it.

7. My Vision: A Care Home I Would Be Proud to Live In

Let me paint you a picture.

Imagine walking into a care home where the first thing you notice is warmth — not just in the décor, but in the atmosphere. Staff greet you by name. The smell of baking drifts from the kitchen. Someone is playing the piano in the lounge. A group is heading out to the garden to check on the tomatoes they planted last week.

The corridors are easy to navigate. The signage is clear. My room looks like my room — with my photos, my books, my favourite blanket.

I can choose when to wake up. I can choose what to eat. I can choose how to spend my day.

If I'm confused, someone gently guides me. If I'm anxious, someone sits with me. If I'm joyful, someone shares that joy.

This is not a fantasy.

 This is achievable.

 This is what good care looks like.

And it's what we should all be fighting for.

8. A Call to Action: What You Can Do

Whether you're a family member, a care worker, a manager, a commissioner, or a policymaker, you have a role to play.

If you're a family member:

Ask questions. Demand transparency. Advocate fiercely.

If you're a care worker:

Know that your compassion changes lives. Push for training and support.

If you're a manager:

Create a culture where staff feel valued, and residents feel seen.

If you're a commissioner:

Fund what matters. Don't settle for minimum standards.

If you're a policymaker:

Listen to us. Involve us. Act with urgency.

If you're a member of the public:

Challenge stigma. Support dementia‑friendly initiatives. Vote with care in mind.

We all have skin in this game. Dementia does not discriminate. Any one of us could be the next person needing care.

Conclusion: Still Me, Still Here, Still Fighting

I may have dementia, but I have not lost my voice. I have not lost my right to shape my future. I have not lost my belief that things can - and must - be better.

The care home I've described is not a dream. It is a blueprint.

A blueprint for dignity.

 A blueprint for joy.

 A blueprint for a society that values every life, even as it changes.

I want to live in a place where I am still me.

 Where my days have meaning.

 Where my choices matter.

 Where I am part of a community.

 Where I am safe, respected, and loved.

This is the care home I deserve.

 This is the care home we all deserve.

 And I will keep fighting for it. For myself, for others living with dementia, and for everyone who will walk this path in the future.

Because we are still here.

 We are still human.

 And we deserve nothing less than a life worth living. Will you join the fight?