When me and my partner see her mom now, we walk into two worlds at once. One is her world – fragmentary, looping, familiar and unfamiliar all at once. The other is ours: full of effort, love, grief, and hope.

She no longer knows who we are, or what day it is. Some days she believes we must be home by five for dinner because “Mom expects me” – her mother and father passed away many years ago. Yet she carries that command like a child with a memory tattooed in her soul. We speak to her gently, repeating names and faces, helping her find her own timeline. She listens sometimes. Other times, she drifts into forgotten rooms in her mind.

This is dementia. It’s not merely forgetting. It is slowly erasing the maps inside a person’s brain; maps of identity, relationships, routines. It’s living in a haze where instructions from childhood re-emerge, even when the person no longer recalls their adult life.

The Misunderstanding of Dementia

Many people think dementia is just memory loss – “Oh, he forgot where he put his keys,” but that is only the tip. Neurocognitive disorders encompass decline across  multiple domains:

• Memory
• Language
• Attention
• Executive function
• Spatial awareness, and
• Behaviour.

Dementia is the umbrella term for when these declines become severe enough to impact daily life.

In the early stages, clarity can remain. A person may remember events or loved ones, but gradually, the brain fails to integrate new experiences, and the threads that bind identity begin to unwind. Language becomes fractured, routines become puzzles, and time loses its driving force.

What Science Tells Us

According to the World Health Organisation, more than 55 million people worldwide are currently living with dementia, with nearly 10 million new cases every year. By 2050, that number is projected to rise to 139 million. It is one of the leading causes of disability and dependency among older adults across the globe.

Neurocognitive disorders are associated with age, genetics, vascular factors (blood pressure, diabetes, cholesterol), brain inflammation, and lifestyle factors like physical activity and cognitive engagement.

• Retirement and mental engagement: Research shows that delaying retirement or staying mentally and socially active can help slow cognitive decline. When people stop learning and challenging their minds, decline can accelerate.
• Social connection: Older adults who stay connected to others show lower rates of dementia. Isolation magnifies decline.
• Diet and exercise: Studies on the MIND diet (a combination of Mediterranean and DASH diets) show slower cognitive decline among older adults. Physical activity supports blood flow and oxygen to the brain.

Science highlights what many caregivers already see: the brain needs fuel, challenge, and connection to thrive.

The Theory I Carry

I believe dementia is not only a disease but sometimes a symptom of lives that have slowed down too much. We live, we work, we push challenges. Then we retire or stop regular routines. The brain, accustomed to activity, may sense less demand. Habits change such as fewer hobbies, less social time, more passive entertainment. The brain may gradually shift into lower gears.

Over time, movement, thought, and purpose diminish. Neural circuits weaken because they no longer need to produce, learn, adapt. It’s a “use-it-or-lose-it” principle. The brain zones into less effort, and step by step some networks fade.

I don’t claim this as scientific fact – but it aligns with what I see: when people sit quietly, isolated, less challenged – diseases of cognition often gather in those shadows.

That’s why I resolve to keep myself active: learning, building, engaging, creating. If dementia is partly a disease of disuse, perhaps we should fight it with purpose.

The Day-to-Day Reality: Living Inside Dementia

• Repeating rules of childhood: “I must be home for dinner” becomes timeless in her mind.
• Wandering: people with dementia often roam and get lost, trying to fulfil old routines or seeking something familiar.
• Emotional fracture: she may laugh, cry, ask questions repeatedly. She doesn’t recognise faces sometimes, but feels safety in touch.
• Disorientation in time and place: dates, months, years collapse. She might talk of “yesterday” as last week, or “home” as a childhood address.
• Dependence and dignity: she needs help showering, dressing, eating. Even then, we try to preserve choice and small routines she still knows.

We walk alongside her. We call her by name or as Mom. We guide gently. We remind her of love. Each visit is tethered between two worlds.

What Helps: Compassion, Care, and Structure

Caring for someone with dementia means keeping them in regular routines, environments that reduce confusion, and communication approaches that lower stress:

• Use simple, calm language, short sentences, one idea at a time
• Provide visual cues – clocks, photographs, familiar objects
• Maintain safe routines – consistent times for meals, rest, light activity
• Engage in meaningful but simplified tasks – folding clothes, sorting items, listening to music
• Stay socially connected – presence matters, even without memory
• Involve informal caregivers – family visits, companionship, connection
• Support from professionals – memory clinics, occupational therapy, medications when appropriate

Some therapies bring surprising light:

• Music therapy: Songs from a person’s youth can unlock emotions and memories long thought lost.
• Reminiscence therapy: Old photos, familiar smells, or family objects can reduce anxiety and spark recognition.
• Sensory therapy: Touching textured fabrics, holding soft toys, or smelling flowers can anchor someone in the moment.

Even when words are gone, emotions can be reached.

The Hidden Toll on Carers

Caring for someone with dementia is an act of love, but it is also exhausting. Families experience grief long before death, a process called “ambiguous loss.” You lose pieces of the person you love, even while they are still alive.

Carers often sacrifice their own wellbeing. They adjust schedules, work less, or carry emotional loads silently. Communities need to support not only those with dementia but also the carers who walk beside them. Respite care, support groups, and recognition of their invisible labour are vital.

Hope and Presence in the Haze

Even as memory dims, human connection remains. Eyes light up with warmth. A hand on the shoulder comforts. Familiar songs can stir a lost mind. There is dignity in being present.

We cannot promise clarity will return, but love can be steadier than memory. Every visit matters. Every greeting matters. Every reminder of care matters.

Final Thoughts

Neurocognitive disorders and dementia are among life’s hardest transitions. They erode identity, but they can never erase love. The disease is relentless, but the human spirit does not quit. Presence, purpose, activity – all push back against the drift.

Me and my partner see her mom in both loss and light. She is cared for, she is loved, and in her confusion, we find connection anyway.

📢 Call-to-Action:

Share this message with someone caring for a person with dementia. Sometimes they need to know they are not alone.

This is a conversation for us all – people struggling and those who want to help and support.

🧭 Follow the full journey: You can catch each day’s post right here and can follow along on LinkedIn, Instagram, or Bluesky. Thank you for joining me on this journey.

🔗 SharePointMark – A Bit of This & A Byte of That

#DementiaAwareness #NeurocognitiveHealth #ItsOKtoNotbeOK #ItsOktoTalk #MentalHealth #LetsTalkMentalHealth #MentalHealthAwareness #SharePointMark