The Hidden Challenges
Behaviour often makes sense when we understand what lies beneath it.
Theme: The Broken
Quick Take:
Dementia doesn't erase personality. Personality has its own kind of muscle memory. The brain systems that allow someone to be warm, funny, compassionate or witty can remain remarkably resilient
The struggle is often invisible.
Understanding changes everything. Our relationships improve and carers feel more confident.
Does Milly Actually Have Dementia?
I spend a great deal of time explaining to people why Milly is still so quick-witted and why she can still offer such wise, thoughtful advice. The fact that her sharp sense of humour remains completely intact often catches people by surprise.
"Does she actually have dementia?"
"Her dementia can't be that bad - she knew my name and remembered I had a dog."
It is frustrating. Because yes, Milly has dementia.
She has no real perception of time. She cannot plan. She forgets where she is. She forgets that she needs to eat. She can no longer manage her own personal care.
Yet she can still make you laugh. She can still comfort you. She can still offer wisdom gathered over a lifetime.
Those things are not contradictions. They are dementia.
The Core of a Person Does Not Simply Vanish
One of the first things I try to explain to carers is this:
Personality has its own kind of muscle memory.
The brain systems that allow someone to be warm, funny, compassionate or witty can remain remarkably resilient, even while the systems responsible for planning, sequencing and judgement are failing. They are the deeply practiced ways a person has spent a lifetime relating to the world.
Dementia strips away many of the practical skills we rely on every day. But underneath those layers remains something deeply human:
the desire to feel loved
the need to feel safe
the longing for meaningful connection
the ability to experience joy
That person is still there.
The Questions are Sadly Not Surprising
Official figures from Skills for Care in 2025 showed that around 63% of care workers still have no recorded specialist dementia training.
Perhaps that explains why so many people struggle to understand what dementia really looks like.
The Hidden Challenges
I thought I would share what everyday life was like for Milly in the early years of her dementia - and, in many ways, what it is still like today except I now take away as many of those difficult mental obstacles as I can.
Milly hasn't cooked for several years now, but cooking is something most of us do without thinking. It perfectly demonstrates how a familiar task can slowly become exhausting.
What once happened automatically now requires constant problem-solving, adaptation and enormous effort.
"Oh no... I've got no pepper."
Mental Flexibility & Planning
Being able to adapt when something doesn't go to plan. Finding an alternative ingredient, changing a recipe or adjusting expectations can become incredibly difficult. A small obstacle may suddenly feel overwhelming.
"What happens next?"
Sequencing
Following steps in the correct order. Should the vegetables be chopped before heating the pan? Have the onions already been added? Managing several steps at once becomes confusing.
"Where's the chicken? I only cooked it this morning."
Time Perception
Understanding the passage of time becomes unreliable. Judging how long something has been cooking, remembering when food was prepared or knowing whether something happened this morning or last week can all become difficult.
"I need a spoon... no... a... um..."
Word Finding
Knowing exactly what an object is, but being unable to retrieve the word. This often causes frustration because the thought is still there, but the language won't come.
"Will the vegetables fit in the pan?"
Spatial Awareness
Judging size, distance, depth and position. Pouring liquids, using kitchen equipment safely or simply navigating around the kitchen can become increasingly difficult.
"Why aren't they eating?"
Social Insight
Understanding what other people are thinking or feeling. It can become harder to recognise preferences, interpret social cues or understand why people respond differently than expected.
"I need everyone to eat and go... I'm tired now."
Emotional Regulation
When the brain is working this hard, emotions become much harder to manage. Small setbacks can quickly become overwhelming, leading to anxiety, anger or distress.
"What will happen if the meal isn't hot?"
Tolerance of Uncertainty
Living with uncertainty becomes incredibly uncomfortable. Worrying that something has been forgotten, that the table isn't set properly or that something might go wrong can create constant anxiety.
"Did I already add the salt?"
Working Memory
Holding information in mind long enough to use it. Remembering what has just been done, what still needs doing or keeping track of several pieces of information at once becomes increasingly difficult.
"Why is the smoke alarm going off?"
Attention & Concentration
Maintaining focus while avoiding distractions. One interruption can mean forgotten pans, missed steps or significant safety risks.
"I've been cooking this for years... why can't I do it now?"
Executive Function
Planning, organising, monitoring progress and solving problems all rely on executive function. Even lifelong routines become confusing when the brain can no longer coordinate the many skills needed to complete them.
It's Never Just Cooking
For most of us, cooking a meal is routine.
For someone living with dementia, it can require dozens of cognitive skills all working together.
When just one begins to fail, the task becomes harder. When several fail at the same time, what looks like "making dinner" becomes an exhausting exercise in problem-solving.
These are the hidden challenges of dementia.
Behind Every Task is a Brain Working Harder than most of us can Imagine
The jokes, the warmth, the memories of long ago and the wisdom may still be there but every day brings so many challenges.
Perhaps the question shouldn't be, "Does she really have dementia?"
Maybe it should be,