To caregivers – about a change that surprises and hurts

This post was born out of a need to share a reflection – about language that changes, and about support that still does not come. I write to you, caregivers, with full respect and understanding for the path you walk every single day.

 

 

After publishing my guides, I heard voices questioning why I use the words “dementia” and “Alzheimer’s,” even though in 2013 DSM-5 introduced a new term: major neurocognitive disorder. In 2019 the World Health Organization adopted a similar approach in ICD-11. Formally, these changes were meant to organize medical criteria and cover a broader spectrum of dementias. But in practice, for families and caregivers – the change of name brought no breakthrough.

 

 

Since 1910 we have called this disease Alzheimer’s. 115 years have passed – and fear is greater than ever, as younger and younger people hear the diagnosis. During this time the system has exhausted all its promises. It had two options: to finally fulfill them, or… to change the name.

 

 

Whenever I heard about “new solutions,” the same word always appeared: system. It sounded serious, but over time it became hollow. Like a bell that rings, yet no one comes. And when it falls silent – only painful silence remains.

 

A caregiver no longer needs promises. A caregiver needs action.

 

 

A caregiver is not only someone who supports their loved one. They are also a proxy, a translator, an accountant, an organizer, a guardian of time and documents. And the system? It still demands too much – and gives too little.

 

Did the change of name bring:

– easier access to specialists,

– temporary relief,

– faster administrative actions?

 

It only gave an illusion. Doctors often refuse an early diagnosis. We face situations when one says: “It’s dementia, please prepare yourself,” while another says: “It’s a neurocognitive disorder – too early for a diagnosis.”

 

And where, in all this, is the caregiver?

 

 

Instead of waiting for the system to change – I decided to start acting where I can. Together with a group of dedicated people we created Health Hand – not instead of the system, but alongside it – as a haven for tired caregivers.

 

The website healthhand.co.uk is live, the blog is active, and our social media channels are running. All this already exists – without labels, without judgment, with care.

 

This is only the beginning.