Dignity and Dementia

Dignity and Dementia

Why Dignity Matters More Than Ever

When I first received my diagnosis of Young Onset Dementia, I anticipated the challenges of memory loss, language difficulties, and loss of independence. However, what I've come to realise is that the true battle isn't just with the condition itself, but with the societal perceptions and treatment that follow the mention of the word 'dementia'.

Dignity is not a luxury. It is not something we earn or lose depending on our ability to work, to remember, or to contribute in the same way we once did. Dignity is a fundamental human right. And yet, for many of us living with dementia, that right is questioned every day.

This blog is my attempt to put into words what dignity means when you're living with Young Onset Dementia, why it matters so profoundly, and what others — whether family, professionals, or the wider community — can do to uphold it.

Being Seen as a Whole Person

One of the first things I noticed after my diagnosis was how people's eyes changed when they looked at me. Some tilted their heads with pity. Others avoided eye contact altogether. And some spoke to my wife instead of me, as if I had quietly exited the room.

Despite my dementia, I am still the same person. I still find joy in laughter, feel frustration when not heard, and savour the taste of a good meal.

My dementia does not erase my individuality, and it's crucial to remember this.

I remember a nurse once sitting down next to me at my level during an appointment, speaking gently and clearly TO me, not ABOUT me. That small act of respect reminded me that my voice still mattered.

That's dignity.

The Everyday Battle for Independence

Living with dementia means I rely more on systems, tools, and sometimes people to help me through the day. But there's a fine line between support and taking over.

A friend once tried to finish every sentence for me when I was struggling to find a word. I know he meant well, but what I felt was invisible.

Contrast that with another time, when someone gave me space, waited patiently, and let me finish at my own pace.

That's the difference between stripping away dignity and preserving it.

Dignity means being allowed to do what I can, even if it takes me longer, even if it looks different from how I once did it.

Respecting My Choices

One of the cruellest assumptions is that dementia renders decision-making impossible. Yes, sometimes I need guidance, and yes, planning for the future is daunting. But my choices - from what I eat to how I spend my day - remain vital to who I am.

I recall sitting in a meeting where others debated what activities people "like me" should do. The suggestions were kind, but no one thought to ask me or noticed that I was holding my hand up to ask to speak. Eventually, I lost patience, and interrupted the debate, and said, "I'd like to decide what's meaningful for me, thanks."

The silence that followed was heavy and uncomfortable - but it mattered.

My dignity was in reclaiming that voice.

The Language of Dignity

Each time I've been labelled as 'a sufferer,'', a victim,' or 'demented,' it feels like a blow. These words reduce me to a condition, not a person. The language we use matters, and it's important to choose words that affirm rather than diminish.

Compare that to when someone calls me by my name, or says I am "living with dementia." Those words hold space for my identity, my resilience, and my ongoing life.

Dignity lives in language - in choosing words that affirm rather than diminish.

Dignity in the Community

It's not just about family or healthcare - it's about society as a whole.

When buses don't wait, when shops rush me through the till, when services assume I can't manage - that erodes dignity.

But I've also experienced the opposite. A shop assistant once noticed I was confused at the self-checkout. Instead of stepping in with frustration, she smiled and said, "Take your time, no rush." That moment cost her nothing, but it gave me something priceless: the feeling that I still belonged.

Conclusion

For me, dignity in dementia isn't about grand gestures. It's about being treated as the person I have always been - with worth, with choice, with respect. It's about patience instead of pity, inclusion instead of invisibility.

I want to leave you with a question:

When you meet someone living with dementia, do you see the diagnosis first, or the person?

My call to you is simple:

• Advocate for dignity.

• Speak up when you see someone being ignored.

• Use language that honours rather than harms.

• Be patient when the pace is slower.

Because one day, it could be you, or someone you love, who needs that same grace.

Dignity is NOT negotiable. It is our shared responsibility.