I think it might be dementia: What you're seeing and why it matters

Margaret was 79. Her daughter Sarah had been noticing things for about a year, but it was hard to pin down exactly when the changes started.

At first, it was forgetting that Sarah had already told her something. Then asking about Sarah's daughter's school - even though Sarah had mentioned multiple times that Emma was at university now. Margaret would repeat stories she'd told the week before. She'd lose track of what day it was.

"I kept thinking, 'She's almost 80, everyone gets a bit forgetful,'" Sarah told us. "And Mum had always been so sharp. I didn't want to be the daughter who pathologised normal ageing."

Then Sarah's brother called from London. He'd been speaking to their mother weekly and hadn't noticed much. But when he called Margaret on her birthday and she seemed confused about whether it was her birthday or not, he mentioned it to Sarah.

"That's when I realised: these weren't isolated incidents anymore. This was a pattern. And I was scared to death of what that meant."

Sarah made a GP appointment. She almost cancelled it three times, afraid she was overreacting, afraid of what they might find, afraid of changing everything by naming it. 

The GP did cognitive screening. Referred Margaret to a geriatrician. After a comprehensive assessment including brain imaging and detailed cognitive testing, the diagnosis came: early-stage Alzheimer's disease.

"The diagnosis was devastating," Sarah said. "But you know what was almost worse? The year I'd spent avoiding it. Because once we knew, we could actually do something. We started medication. We got legal documents done while Mum still had capacity. We had conversations about what she wanted while she could still tell us. If I'd waited longer ... if I'd kept explaining away the signs, we would have lost that window."

Three years later, Margaret is in moderate-stage dementia. She lives in a residential care facility with specialised dementia support. Sarah visits twice a week. Margaret can't always remember Sarah's name, but she knows Sarah is someone important who loves her.

"I'm grateful we had those early conversations," Sarah said. "Because now when I make decisions for her - about her care, her medical treatment, what activities she participates in - I know what she would have wanted. I'm not guessing. She told me. While she still could."

 

Let's distinguish between normal ageing and something that needs assessment.

Normal aging memory changes:

• Occasionally forgetting where you put your keys

• Walking into a room and forgetting why

• Forgetting someone's name but remembering it later

• Missing an appointment occasionally

• Taking longer to learn new things

Changes that warrant assessment:

• Asking the same question multiple times in one conversation (and not remembering they already asked)

• Getting confused about familiar places or how to get somewhere they've been many times

• Forgetting recent conversations entirely - not just details, but that the conversation happened

• Difficulty with familiar tasks (can't remember how to make a recipe they've made for years)

• Poor judgment or decision-making that's out of character

• Confusion about time, dates, or seasons

• Personality changes - becoming suspicious, anxious, or withdrawn when they weren't before

• Word-finding difficulties that interfere with communication

The key difference: Normal ageing doesn't significantly interfere with independence or daily function. Your parent might slow down, but they're still managing their life. With dementia, you start noticing they're struggling with things they used to handle easily.

Here's what makes dementia uniquely cruel compared to other serious diagnoses:

When someone has early-stage dementia, there's often a strong desire to focus on living in the present. To not think about decline. To take things one day at a time. And families, wanting to respect that dignity and autonomy, often follow their lead.

But dementia doesn't wait for families to feel ready.

The window for capturing a person's authentic wishes - about care, medical interventions, living arrangements, what constitutes acceptable quality of life - narrows steadily. By the time a crisis hits (a fall, hospitalisation, safety incident), the person may no longer be able to participate meaningfully in decisions about their own future.

Research shows that 47-71% of dementia caregivers experience "anticipatory grief" - mourning someone who is still alive - because the person they knew is gradually disappearing while difficult decisions about their care still need to be made.

This is the dementia paradox:
Families desperately try to plan for someone whose capacity to plan is disappearing.

Early-stage dementia patients often want to live in the present and avoid discussing decline. Families know difficult decisions are coming. By the time a crisis hits, the person can no longer express their wishes, forcing families to guess what they would have wanted.

 

Before you spiral into worst-case scenarios, here's something important: several treatable conditions can mimic dementia.

Reversible causes of dementia-like symptoms:

Depression (very common in older adults, often looks like dementia) - treatable with medication and therapy

Vitamin B12 deficiency- simple blood test, easily treated with supplements

Thyroid problems - blood test, treated with medication

Urinary tract infections (UTIs) - especially in the elderly- can cause acute confusion that resolves with antibiotics

Medication side effects or interactions - some medications cause confusion, changing or adjusting doses can reverse symptoms

Dehydration or malnutrition - more common than people think, especially in elderly living alone

Sleep disorders - untreated sleep apnea can cause memory and concentration problems

This is why assessment matters:
If it's something treatable, you catch it. If it's dementia, you catch it early when interventions help most.

 

When most people think of "dementia," they picture late-stage: non-verbal, bedridden, not recognising family. That's understandable. It's what we see in the media and what terrifies us most.

But early-stage dementia looks very different.

In early-stage dementia, people can still live relatively independently with support, maintain relationships, participate in activities they enjoy, and have meaningful conversations. They're not incapacitated. They're managing, with help.

What early-stage typically involves:

• Short-term memory problems (can remember distant past clearly, struggle with recent events)

• Difficulty with complex tasks (managing finances, planning, multi-step activities)

• Word-finding difficulties in conversation

• Getting lost in familiar places occasionally

• Taking longer to complete familiar tasks

• Mild personality or mood changes

What's usually still intact in early stage:

• Long-term memory (childhood, young adulthood often crystal clear)

• Core personality and sense of self

• Ability to engage in conversation

• Ability to make decisions with support

• Enjoyment of activities, relationships, experiences

• Physical health and mobility (unless other conditions)

How long early stage lasts:
Variable. Some people remain in the early stage for several years. Progression isn't linear or predictable.

This is why early diagnosis helps:
You get to access treatment (medications that can slow progression for some people), make plans while your parent can participate, and understand what you're dealing with so you can plan support rather than react to a crisis.

 

Let's be honest. Part of you probably wants to avoid assessment because if you don't name it, maybe it's not real yet.

But here's what early diagnosis actually enables:

Medical treatment options
Medications don't cure dementia, but for some people, they slow progression and improve quality of life in early-moderate stages. These work best when started early.

Legal and financial planning while capacity exists
Enduring Power of Attorney, Advance Care Directives, accessing finances to help manage - these documents require capacity. Wait too long, and you're facing guardianship tribunal processes that are expensive, emotionally draining, and time-consuming.

For more on this, see: The documents you need (before you need them)

The conversations that can't happen later
What matters most to your parent in this chapter of life? Where would they want to live if they need care? What medical interventions would they want or refuse? Who should speak for them? These conversations need to happen while they can still clearly express their wishes.

For guidance on these conversations, see: The kitchen table conversations that need to happen

Access to support services
Diagnosis opens doors: dementia-specific day programs, support groups, respite care, care coordination, education for families. Without diagnosis, you're managing alone.

Time to build the village
Early diagnosis gives you time to activate support networks - neighbours, friends, community - before you're in crisis mode and desperately need help.

For strategies on this, see: Remember when you had a village to raise your kids? Your parents need one too.

Peace of mind for your parent
Many people with early dementia know something's wrong. They're scared. They're hiding it. Diagnosis can actually be a relief - validation that they're not imagining it, an understanding of what's happening, and access to support.

 

This is the fear that stops people from pursuing assessment.

Here's the reality: Comprehensive dementia assessment is non-invasive. Cognitive testing, medical history, physical exam, blood work, and brain imaging. Nothing painful. Nothing traumatic.

And the outcomes are:

1. It's something treatable (depression, B12 deficiency, medication issue). You've just saved your parent from progressive decline

2. It's early dementia. You've caught it when interventions help most, and planning is still possible

3. It's normal ageing. You have peace of mind and a baseline for future comparison.

 

We'll cover this in detail in the next article, but here's the basic pathway:

Step 1: GP appointment
Comprehensive assessment, cognitive screening (GPCOG test), medical history, and ruling out reversible causes. If a GP suspects dementia, they refer to a specialist.

Step 2: Specialist assessment
Geriatrician, neurologist, or geriatric psychiatrist. Detailed cognitive testing, brain imaging (CT or MRI), and sometimes additional tests. This is where the diagnosis is made.

Step 3: Diagnosis and planning
If dementia is confirmed, discussion about type (Alzheimer's most common, but also vascular dementia, Lewy body, frontotemporal), stage, medication options, and support services.

Timeline:
From initial GP visit to diagnosis typically takes 2-4 months, depending on specialist wait times.

What to do while waiting:
Document what you're observing (specific examples, dates if you remember them). Talk to others who see your parent regularly - what are they noticing? Start thinking about who would be the best person to hold Power of Attorney.

When you're lying awake at 2am wondering if it's dementia, what you're actually asking is: "If it is dementia, can I handle what comes next?"

Here's the honest answer: You can. Not because it's easy. Not because you'll do it perfectly. But because thousands of families are managing dementia care right now, and most of them felt exactly as unprepared as you do.

What helps:

• Early diagnosis (gives you time to plan and access support)

• Education (understanding what's actually happening reduces fear)

• Support networks (you cannot do this alone, and you're not supposed to)

• Professional help (dementia care services exist - use them)

• Permission to prioritise safety over preference (hard decisions will come, having frameworks helps)

What doesn't help:

• Avoiding assessment because you're scared

• Trying to manage everything yourself

• Expecting yourself to be an expert caregiver with no training

• Feeling guilty about every decision

Three years into her mother's dementia journey, Sarah has this advice for families just starting to notice changes.

 

If you're recognising patterns in what you've read, here's what to do this week:

1. Document what you're seeing
Write down specific examples: What happened? When? How often? This helps GP understand patterns vs. isolated incidents.

2. Talk to others who see your parent regularly
Neighbor? Friend? Sibling? Ask: "Have you noticed any changes?" Often others are noticing too, but haven't mentioned it.

3. Book GP appointment
Say: "I'm concerned about Mum's memory and cognitive changes. I'd like a comprehensive assessment." Be specific about what you're seeing.

 

• Dementia Australia: 1800 100 500 (24/7 helpline, dementia-specific support)

• GP for comprehensive geriatric assessment and cognitive screening

• National Dementia Helpline for information and support while deciding what to do

• National Carer Gateway for free practical and emotional support for you, as you care for your parent