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Dementia: Understanding the Person Behind the Diagnosis

Updated: Dec 7, 2025

By Donna Burfield - Joy & Purpose Coaching

 

Dementia isn’t just about memory loss. It isn’t just about ageing. And it isn’t something that only happens “over there,” to other families.

 

Dementia is deeply human. It affects identity, communication, relationships, and daily life, not just for the person living with it, but for everyone around them.

 

Dementia doesn’t just change what someone remembers; it changes how they experience the world.

 

But even with all its challenges, there is still connection, still joy, still meaning, still love. There are ways to support, adapt, and protect the dignity of the person at every stage.

 

No one should have to navigate dementia alone.


 

The Reality of Dementia in the UK

 

According to Alzheimer’s Society, there are currently over 900,000 people living with dementia in the UK, and this number is expected to reach 1.6 million by 2040. One in three people born today will develop dementia in their lifetime.

 

Globally, the World Health Organisation estimates over 55 million people live with dementia, with nearly 10 million new cases each year.

 

Dementia is not a normal part of ageing; it is a medical condition affecting the brain.


 

What Dementia Is and Isn’t

 

Dementia is an umbrella term for a group of conditions that affect:

 

  • memory

  • thinking

  • behaviour

  • communication

  • decision-making

  • daily functioning

 

But dementia is not:

 

  • a mental health condition

  • a natural part of getting older

  • a loss of personhood

  • something to be ashamed of

 

Dementia is a neurological condition, and it does not erase the person’s value, identity, or humanity.


 

Types of Dementia

 

There are many forms of dementia, each with unique features. Understanding the type helps families support more effectively.

 


1. Alzheimer’s Disease

The most common type (about 60-70% of cases). Characterised by memory loss, confusion, word-finding difficulties, and gradual cognitive decline.

 


2. Vascular Dementia

Caused by reduced blood flow to the brain and is often linked to stroke or cardiovascular conditions. Symptoms can appear suddenly and may include slowed thinking and difficulty with planning.

 


3. Lewy Body Dementia

Characterised by visual hallucinations, fluctuating alertness, sleep disturbances, and movement symptoms similar to Parkinson’s.

 


4. Frontotemporal Dementia (FTD)

Affects personality, behaviour, and language. Often diagnosed earlier (40s-60s).

 


5. Mixed Dementia 

A combination of Alzheimer’s and other forms of dementia.

 


6. Parkinson’s Disease Dementia

Develops in people with long-term Parkinson’s, affecting memory, attention, and visuospatial skills.

 

Every type has its own challenges and its own ways to support and adapt.


 

Common Symptoms of Dementia

 

Dementia can show up differently for each person, but some symptoms include:

 


Memory and Thinking

 

  • Forgetting recent events

  • Repeating questions

  • Difficulty concentrating

  • Problems with problem-solving or planning

 


Communication

 

  • Struggling to find the right words

  • Losing track of conversations

  • Misunderstanding instructions

 


Behaviour & Emotional Changes

 

  • Mood swings

  • Increased anxiety

  • Irritability or frustration

  • Withdrawal from social situations

  • Personality changes

 


Daily Living

 

  • Getting lost in familiar places

  • Difficulty managing finances or medication

  • Forgetting appointments

  • Misplacing items

 


Physical Changes

 

  • Movement difficulties

  • Shuffling gait (especially in Lewy Body dementia)

  • Sleep disturbances

 

These symptoms are not intentional. They are signs of a brain that needs gentleness, patience, consistency, and time.


 

The Emotional Impact on Everyone Involved

 

Dementia affects more than thinking; it impacts emotional safety, identity, and connection.

 


For the person living with dementia, it may feel like:

 

  • confusion

  • frustration

  • fear

  • feeling “lost” inside yourself

  • difficulty expressing emotions

  • moments of clarity followed by overwhelm



For caregivers, it may bring:

 

  • grief and anticipatory loss

  • exhaustion

  • guilt

  • frustration

  • love mixed with heartbreak

  • fear of the future

 

Both experiences deserve compassion and support.


 

What Helps

 


1. Early Diagnosis

A GP appointment is the first step. Early diagnosis can unlock support, planning, and resources.

 


2. Consistency and Routine

Structure helps the brain feel safer and reduces confusion.

 


3. Clear, Simple Communication

Slow, calm, one instruction at a time.

 


4. Sensory-Friendly Environments

Reduce noise, clutter, and overstimulation.

 


5. Focus on Strengths, Not Losses

There will be moments of connection, humour, memory, and presence.

 


6. Look After the Carer

Caregivers burn out easily; support is essential, not optional.

 


7. Connection Over Correction

If they get a fact wrong, let it go. What matters is how they feel, not what they remember.


 

UK Dementia Support Organisations

 



You do not have to face dementia alone. Support exists for the person living with it and the person supporting them.


Dementia changes many things, but it does not erase the person. It does not erase their history, their humanity, or their capacity for connection.

 

There will be hard days, days filled with grief, confusion, or exhaustion. But there will also be moments of tenderness, humour, clarity, and love that remind you of who they are beneath the symptoms.



🌿 You can explore more free tools, articles, and supportive resources on the Joy & Purpose Coaching website.

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