The dementia paradox: Why the hardest conversations need to happen early

Anh's father Minh, was 76 when she started noticing memory problems. The GP referred him to a specialist. After assessment, the diagnosis came: early-stage Alzheimer's.

Anh wanted to talk about the future. Power of Attorney, care preferences, and what her father wanted if things got worse. But Minh shut down every attempt.

"I'm fine," he'd say in Vietnamese. "I don't need to think about that yet. Let's just focus on today."

Anh respected that. Her father had always been independent, proud. In Vietnamese culture, discussing decline or death was considered disrespectful, almost like inviting bad luck. She didn't want to take away his dignity by forcing conversations about a future neither of them wanted to face.

Two years later, Minh had a fall. Hospitalised with a broken hip. Surgery went well, but during recovery, his cognitive state deteriorated rapidly - a common occurrence after hospitalisation in dementia patients.

Now Anh was facing decisions: Could her father return home alone? Did he need residential care? What about the surgery recovery? Would he want aggressive rehabilitation or comfort-focused care? What constituted an acceptable quality of life for her father?

Minh couldn't answer any of these questions. The fall and hospitalisation had pushed him from early-stage to moderate-stage dementia seemingly overnight. He was confused, agitated, and couldn't remember conversations from five minutes ago.

Anh had to guess. What would her father want? She'd never asked him directly. They'd never had the conversation.

Minh is now in residential aged care in a facility with other Vietnamese residents. He's safe, fed, supervised. The staff speak Vietnamese, serve familiar food.

But Anh lies awake wondering: Is this what he would have wanted? Would he have preferred to stay home with maximum support? Would he have wanted a different facility? What would he consider an acceptable quality of life?

 

Let's acknowledge why talking about dementia progression and future care feels impossibl.:

1. We don't want to upset them
Your parent wants to focus on today. Talking about decline feels cruel. Like you're stealing hope.

2. Cultural or religious beliefs make it taboo
In many cultures, discussing death or serious illness is considered bad luck, disrespectful, or against tradition. The family protects the elder by not burdening them with difficult topics.

3. We don't want to face it ourselves
If we don't talk about it, maybe it won't happen. Maybe they'll be the exception. Maybe we'll figure it out when we get there.

4. We're afraid of taking away their autonomy
Discussing what happens when they can't make decisions feels like stripping their independence before they've actually lost it.

5. We don't know how to start
What do you even say? "Hey Dad, let's talk about what happens when you can't remember who I am"? It feels impossible.

6. We think we have more time
 Early-stage can last years. There will be a better moment. When they're ready. When we're ready.

 

Research shows that 47-71% of dementia caregivers experience anticipatory grief, mourning someone who is still physically alive. This grief is different from bereavement after death. It's watching someone you love gradually disappear while you're still caring for them daily.

Anticipatory grief in dementia includes:

• Mourning the relationship you had
  (meaningful conversations, shared decision-making, mutual support)

• Grieving the future you planned
  (travel, retirement together, them meeting grandchildren as themselves)

• Loss of their personality, sense of humour, the things that made them uniquely them

• The role reversal - becoming their parent when they were always yours

Why early conversations help with anticipatory grief:

When you have conversations early, when your parent can still articulate their values, preferences, hopes, and fears - you're giving future-you a gift. You're capturing their voice, their wishes, their essence before dementia takes that capacity away.

Later, when you're making hard decisions, you're not guessing. You know. Your parent told you. While they could.

 

These aren't medical conversations. They're human conversations. About what matters, what brings joy, what constitutes a life worth living.

Start when everyone is relatively well, around the kitchen table - not in hospital corridors during a crisis.

Opening invitations (not demands):

"Ba, I have something on my mind that I think you could help me with..."

"I wonder how much you've already thought about what matters most to you as you get older?"

"You've given me Power of Attorney, which is such an honour. But I worry I don't know enough yet to be sure about what's most important to you."

These openings work because they:

• Position parent as expert on their own life (respect)

• Frame it as helping you understand, not forcing them to plan (collaboration)

• Acknowledge their autonomy (honour)

Listen more than you talk. Embrace silences as processing time.

Questions that invite reflection:

"What brings you the most joy these days?"

"Who are your most important relationships?"

"Where do you feel most at peace?"

Responses that encourage more:

"If I've understood you right, what you're telling me is..." (then reflect back what you heard)

"What does that look like for you?"

(Simply wait through the silence. Count to 10 in your head. Let them think.)

Focus on values, not just logistics:

Don't jump straight to "Do you want to be in a nursing home?" That's too big, too scary, too abstract.

Instead, explore what matters:

"What makes life worth living for you, even when things get harder?"

"What would be the things that matter most to you that we should get right?"

"What would make a good day for you if you couldn't do all the things you do now?"

"What are you most proud of in your life?"

Then move to preferences based on those values:

"Most people have a best hope and a worst dread about ageing - what are yours?"

"If we couldn't do it quite like that, what should we bear in mind to make it as close as possible?"

Make it ongoing. Preferences change with age and health:

This isn't one conversation. It's a series of conversations over time.

Follow-up conversation starters:

"I really enjoyed our conversation last time and learned so much about what matters to you."

"There was something you said that I've been thinking about - can I ask you more?"

"You mentioned [specific thing]. Has that changed at all for you?"

Acknowledging change:

"I know these things can change as we get older or if your health changes."

"Should we check in about this again in a few months?"

Document everything:

"Can we write some of this down so I remember it properly?"

"Would it help to document these preferences somewhere the whole family can see them?"

"Who else should know about these wishes?"

What to document:

• Core values (what makes life worth living, what matters most)

• Relationships (who's most important, who should be involved in decisions)

• Care preferences (home vs residential care, level of medical intervention, quality vs quantity of life)

• Decision-makers (who speaks for them if they can't speak for themselves)

This documentation doesn't replace legal documents (POA, Advance Care Directives). Those are essential. But it captures the nuance, the values, the wishes that legal forms can't.

For detailed guidance on legal documents, see: The documents you need (before you need them)

 

Minh didn't want to talk about future care. Many people with early dementia don't. They want to focus on living now, not planning for decline.

What helps:

1. Start with today, not future decline

Instead of: "What do you want when you can't live alone anymore?"

Try: "What's most important to you in your daily life right now?"

The answers to "what matters now" often reveal values that guide future decisions.

2. Frame it as helping you, not planning for them

"I want to make sure I understand what matters to you, so if you ever need me to speak for you, I get it right."

This is less threatening than "when you have dementia and can't decide."

3. Use third-party examples

"I was reading about someone who had to make decisions for their parent without knowing what they wanted. It made me wonder what you would want in that situation."

Talking about "someone else" is less personal, less scary.

4. Respect cultural approaches while still planning

If your culture discourages direct discussion of decline or death, you can still gather information through indirect questions about values, preferences, and what brings meaning. Focus on "what matters most to you" rather than "when you're dying."

5. Come back to it gently

One refusal doesn't mean never. Try again in a few weeks with a different approach. Persistence without pressure.

6. Involve professionals if needed

Sometimes people will have conversations with doctors, social workers, or aged care assessors that they won't have with family. Ask GP to initiate the conversation during an appointment.

For more conversation strategies, see: 
The conversations that need to happen at your kitchen table (not a hospital corridor)
The three conversations to have before everything changes
When your family avoids 'the talk': How to start anyway.

 

If your parent is transitioning from early to moderate-stage dementia, the window for detailed conversations is narrowing. You can still capture:

Simple preferences: "Would you rather stay home or move somewhere with more help?" (offering two clear options)

Values-based questions: "What makes you happy?" "Who do you most want to see?"

Observations: How do they spend their day? What brings them joy? What upsets them? These behaviours reveal values even when they can't articulate them.

Involve them in decisions while you can: Even if they can't plan long-term, they can often express immediate preferences. "Would you like to wear the blue shirt or the red one?" "Should we visit the park or stay home?" Autonomy in small decisions matters.

For more on supporting autonomy and communication as dementia progresses, see:
 Honouring their voice: Communication and dignity through dementia

Parallel to values conversations, legal documents are time-critical.

These require capacity:

• Enduring Power of Attorney (financial and medical)

• Advance Care Directive

• Updated will

Capacity means: Your parent understands what the document does, the consequences of signing it, and can retain that information long enough to make an informed decision.

In early-stage dementia, capacity often exists. But it's declining. Every month you wait increases risk that they'll no longer have legal capacity.

Once capacity is lost, you're facing guardianship tribunal processes—expensive, time-consuming, emotionally draining, and legally complex.

Timeline pressure: If your parent has been diagnosed with dementia, get legal documents done within 3-6 months of diagnosis. Not eventually. Soon.

For detailed guidance, see: The documents you need (before you need them)

 

Four years into her father's dementia journey, Anh has this perspective:

"I thought respecting Ba's autonomy meant not talking about decline until he brought it up. I thought following our cultural tradition of not discussing death meant I was being a good daughter. But that's not actually respect ... that's avoidance dressed up as respect."

"Real respect would have been:

• Acknowledging this was hard but important

• Having gentle, ongoing conversations even when he initially resisted

• Documenting his values while he could articulate them

• Getting legal documents done before capacity became questionable

• Preserving his voice for future-me to reference when making decisions

"I confused 'letting him live in the present' with 'avoiding planning for the future.' Those aren't the same thing. You can do both."

"Now I make decisions for someone who can't tell me what they want. I'm doing my best. I found a facility with Vietnamese staff and residents, with food he knows, with people who speak his language. I think he would want that. But I don't know for certain ... because I never asked."

If your parent has been diagnosed with early-stage dementia, here's what to do:

This month:

1. Start the values conversation
   Use the questions in this article. Even one conversation is better than none.

2. Get legal documents done immediately
   Book an appointment with a solicitor specialising in elder law. Explain that your parent has a dementia diagnosis. They'll assess capacity and help with urgency.

3. Document current preferences
   What makes them happy? What upsets them? Who matters most? Write it down now.

This quarter:

4. Have ongoing conversations
   Return to the values discussion monthly. "Last time you mentioned [X],is that still true?"

5. Involve family in documenting wishes
   Share what you're learning with siblings, key family members. Make sure multiple people know your parent's values and preferences.

6. Read the next article in this journey
   Early-Stage Dementia: What Life Actually Looks Like Right Now - what to expect, how to support, what makes this stage manageable.