Understanding Dementia: What It Is, What It Isn't, and Why There's More Hope Than Ever?

Long before I became a nervous system educator and coach, I spent many years working in care, supporting people living with Alzheimer's disease and those approaching the end of life. Every person taught me something different. Some no longer recognised their own families. Some sang every word of songs from their childhood. Others met the world with fear or frustration because it no longer made sense to them. Yet beneath every diagnosis remained a person deserving of dignity, patience and compassion.

Working in care taught me something I have never forgotten. Even after names had been forgotten, emotions often remained. A hurried tone could still create anxiety. A warm smile could still bring calm. A gentle hand offered with respect could still communicate safety. 

“Memory may fade, but the nervous system continues to respond to kindness.”  Carly Hammond

Those years shaped not only how I care for others, but how I understand the human brain, the nervous system and what it truly means to feel safe.

"We're all just walking each other home." Ram Dass 

Last month we explored the incredible complexity of the human brain. We talked about neuroplasticity, the brain's remarkable ability to adapt and change throughout our lives, offering hope even after trauma, illness and adversity.

This month, I wanted to continue that conversation.

For many of us, there is one condition that quietly sits in the background of our thoughts as we grow older. Perhaps we've watched a grandparent slowly change. Maybe a parent has recently received a diagnosis. Or perhaps we've found ourselves wondering whether becoming forgetful is simply part of ageing or something more.

Dementia is one of the illnesses people fear most. Yet it is also one of the most misunderstood.

Knowledge cannot remove the sadness, but it can replace fear with understanding, and understanding allows us to respond with greater compassion, both towards those living with dementia and those who love them.

Dementia or Alzheimer's?

These terms are often used interchangeably, but they are not the same thing.

Dementia is not a disease. Instead, dementia is an umbrella term used to describe a collection of symptoms affecting memory, thinking, communication, reasoning and the ability to manage everyday life.

Alzheimer's disease is the most common cause of dementia, accounting for around two-thirds of cases.

There are several other forms, including vascular dementia, Lewy body dementia and frontotemporal dementia. Each affects the brain differently, which is why no two people's experiences are ever quite the same.

The word dementia describes what we see.

The diagnosis explains why it is happening.

What happens inside the brain?

Our brains are made up of billions of nerve cells, called neurons, constantly communicating with one another.

In Alzheimer's disease, those communication pathways gradually become damaged.

Abnormal proteins begin to accumulate, connections between brain cells are lost, inflammation may play a role, and over many years some areas of the brain begin to shrink.

The result isn't simply forgetfulness.

It can affect language, judgement, planning, emotions, movement, recognising familiar faces and even understanding the world around us.

It is important to remember that this process usually develops slowly. What begins as occasionally misplacing keys is very different from repeatedly becoming lost in familiar places or struggling to recognise loved ones.

Why does it happen?

The honest answer is that we still don't fully know.

Age remains the greatest risk factor, and genetics can increase someone's likelihood of developing certain forms of dementia.

However, research over the last decade has also shown that our overall health appears to play a far greater role than many people once believed.

Scientists now know that what is good for the heart is often good for the brain.

Looking after blood pressure, managing diabetes, exercising regularly, sleeping well, staying socially connected, protecting our hearing, reducing smoking and excessive alcohol, and remaining mentally active all appear to help reduce risk.

This is an important distinction.

It does not mean that someone who develops dementia has somehow failed or brought it upon themselves.

Many people live incredibly healthy lives and still receive a diagnosis.

Equally, none of us are powerless.

Looking after our physical and emotional wellbeing throughout life appears to give our brains the very best opportunity to remain healthy for longer.

Emerging research also suggests that diets high in added sugars and ultra-processed foods may indirectly increase the risk of dementia by contributing to conditions such as obesity, insulin resistance, diabetes and cardiovascular disease. Whilst no single food causes Alzheimer's disease, looking after our metabolic health appears to benefit both our heart and our brain.

Is dementia preventable?

This is perhaps one of the questions I hear most often.

The answer is both encouraging and honest.

At present, we cannot prevent every case of dementia.

However, growing research suggests that a significant proportion of cases may be linked to factors we are able to influence.

Whilst there are no guarantees, every walk we take, every nutritious meal, every good night's sleep, every meaningful conversation and every effort to manage stress may be quietly supporting the health of our brains.

Small choices, repeated consistently, matter.

Supporting someone living with dementia

One of the greatest lessons dementia teaches us is that communication is about far more than words.

As memory changes, our instinct is often to correct.

"No Mum, that happened years ago."

"Dad, don't you remember?"

Usually, this comes from love.

Yet repeatedly correcting someone can leave them feeling frightened, embarrassed or confused.

Instead, many dementia specialists encourage us to enter their reality rather than constantly trying to bring them back into ours.

Slow down.

Offer reassurance before information.

Keep choices simple.

Reduce overwhelm.

Maintain routines where possible.

Above all else, remember that behaviour is communication.

Agitation, withdrawal or frustration often reflect fear, confusion or unmet needs rather than someone deliberately being difficult.

Behind every diagnosis is a lifetime of experiences, relationships, achievements, humour, hopes and dreams. Dementia can change how someone thinks, speaks, behaves and relates to the world, but it never diminishes their worth as a human being.

The person is still deserving of our dignity, compassion and respect, even when the way they experience or express themselves has profoundly changed. They simply need us to meet them differently.

I remember one gentleman whose fear came out as anger. If I entered unexpectedly, he would lash out, not because he was unkind, but because his world no longer felt safe. I learnt to slow down, to smile before speaking, to approach within his line of sight, and often everything changed.

Another lady who could no longer remember what she'd eaten for breakfast, yet every afternoon she sang every verse of songs from her childhood. Music reached a part of her that words no longer could.

One of the remarkable things we continue to learn is that music has an extraordinary ability to reach parts of the brain that often remain accessible long after other memories begin to fade. It can unlock emotions, bring comfort and reconnect someone, if only for a few precious moments, with themselves and those around them.

The grief nobody prepares us for 

"Ambiguous loss is the most stressful kind of loss because there is no closure." Pauline Boss

Perhaps one of the hardest aspects of dementia is that grief doesn't always begin after someone dies.

Sometimes it begins while they're still sitting beside us.

There is a particular kind of sorrow that comes from watching someone gradually change. You may still hold their hand, hear their voice or share a meal together, yet quietly find yourself mourning conversations you'll never have again, memories they no longer recognise, or the relationship that once felt so familiar.

This experience is sometimes called ambiguous loss.

There is no clear ending.

No funeral.

No moment where life divides neatly into before and after.

Instead, there are many small losses.

You grieve pieces of someone over time.

That can leave families feeling confused or even guilty.

"How can I grieve someone who is still here?"

The truth is, many people do.

Loving someone with dementia often means holding two realities at once.

The sadness of what has changed.

And the gratitude for what remains.

There may still be moments of laughter.

A familiar smile.

A squeeze of the hand.

A favourite song.

A shared cup of tea.

Connection doesn't disappear simply because memory changes.

Sometimes it becomes quieter.

Simpler.

Perhaps even more precious.

There is hope…

Although there is currently no cure for Alzheimer's disease, our understanding of dementia is advancing more rapidly than ever before.

Earlier diagnosis, improved treatments, healthier lifestyles and greater awareness are all helping people live better for longer.

Perhaps the greatest lesson dementia offers us isn't about memory at all.

It's about humanity.

It reminds us that our value has never been measured by how much we remember, how productive we are or how quickly we think.

It is found in our relationships.

In kindness.

In dignity.

In feeling safe.

In knowing we belong.

As we continue learning more about the brain, may we never forget the person who lives within it.

Because whilst memories may change, our need to be treated with dignity, compassion and humanity never does.

Maya Angelou once wrote, "People will forget what you said, people will forget what you did, but people will never forget how you made them feel." Few conditions illustrate that more beautifully than dementia. Even when memories fade, kindness, reassurance, safety and love still matter.

Further Information and Support

If dementia is affecting you or someone you love, the following organisations offer trusted information, practical guidance and emotional support.

• Alzheimer's Society (UK) – Clear, evidence-based information for people living with dementia, family members and carers.

• Dementia UK – Specialist support from Admiral Nurses, particularly valuable for family carers.

• France Alzheimer – France's national charity supporting people living with Alzheimer's disease and related dementias, with local associations across the country offering education, support groups and activities.

For readers in Normandy (Manche)

If you're based in the Manche department, France Alzheimer Manche provides local support, information, family meetings, memory cafés, adapted activities, and guidance for carers through several sectors across the department, including Saint-Lô, Granville, Coutances, the Baie area and the Cotentin.

If you're an English-speaking expatriate living in France, don't be put off by the French-language website. Local volunteers are often happy to work with families to find practical solutions, and you may find it helpful to take a French-speaking friend or family member to your first meeting if language feels like a barrier.

If you or someone you love is on this journey, I hope this article has helped replace a little uncertainty with understanding. If you're caring for someone living with dementia, please remember that you deserve kindness too. You are not walking this path alone.

With warmth, 

Carly Hammond