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Having Difficult Conversations
Practical strategies for navigating challenging discussions about your child's condition.
Summary
This guide provides conversation starters, responses and approaches to help you communicate with family, friends, healthcare providers and even strangers. This resource features:
- The initial disclosure — telling people about the diagnosis
- Understanding paediatric palliative care — breaking through the fear
- Conversations with other siblings — supporting the whole family
- Accessing carer supports and services — advocating when you’re exhausted
- Changed relationships — when everything shifts
- At the playground — when childhood differences become visible
- Living with anticipatory grief — mourning while your child is still here
- Navigating lonely milestones — when celebration meets heartbreak
- Workplace conversations — professional life meets personal crisis
If your family is impacted by childhood dementia, we invite you to receive updates and learn about ways to connect with Childhood Dementia Initiative and with other families.
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INTRODUCTION
Dear parent
As a parent of a child with childhood dementia, you'll find yourself having conversations you never imagined. Some will be about practical matters – diagnosis, services, support. Others will be among the most emotionally challenging discussions of your life – genetic risks, palliative care, grief that begins before loss, and milestones that will never come.
These conversations can feel overwhelming, but they're also opportunities to build understanding, gather support and advocate for your child and family. This guide provides practical strategies, conversation starters and responses to help you navigate these difficult but important discussions.
“Even just day-to-day conversations, I find challenging, like when people ask me how my daughter is going... I find those conversations actually quite difficult to navigate..." - Parent of a child with a childhood dementia condition
Understanding why these conversations matter
Building your support network: The people who understand your situation are more likely to provide meaningful, long-term support.
Reducing isolation: Open conversations can prevent the gradual withdrawal that many families experience.
Protecting your family's wellbeing: Setting clear expectations and boundaries helps create healthier relationships.
Understanding the potential impacts upon your broader family: Open conversations about the possible implications of a genetic condition are important for families.
Advocating for your child: Each conversation is an opportunity to help others see your child as a whole person, not just their diagnosis.
Processing your own grief: Sharing your reality can help you process the complex emotions you're experiencing.
“I learned that the people who stayed after the hardest conversations were the ones worth having in our lives.” — Parent
SUPPORTING YOURSELF WHEN NAVIGATING DIFFICULT CONVERSATIONS
Preparing for difficult conversations
Before you start
Choose the right time and place
- Pick a time when you won’t be interrupted
- Choose a comfortable, private setting
- Ensure you have emotional energy for the conversation
Prepare key points
- Write down 2 to 3 main things you want to communicate
- Think about what you hope to achieve from the conversation
- Prepare for different reactions — some topics will shock people
Take care of yourself first
- Have these conversations when you’re feeling strong
- Consider having a support person with you
- Plan something nurturing for yourself afterwards
Know your limits
- You don’t have to share everything at once
- It’s okay to say, “I’m not ready to discuss that yet”
- Some conversations may need to happen in stages
What is emotional energy?
Many people haven’t had to think about their emotional energy before, and they won’t anticipate the extent or intensity required for these conversations about childhood dementia.
“Some people are not going to understand — they’ve never had to think about their emotional energy. They’re not going to anticipate the extent or the intensity of the emotional energy they’re going to use having these conversations.” — Parent
Why this matters:
Everyone has a limited amount of emotional energy each day, and these conversations often demand a significant portion of it. Recognising this helps you make choices about when and how to engage.
Emotional energy drains physical energy. After difficult conversations, you might feel physically exhausted, not just emotionally tired.
After difficult conversations:
- Plan physical rest, not just “something nurturing”
- Have no obligations or responsibilities lined up
- Recognise you might need more recovery time than expected
These ‘conversations’ don’t have to be face-to-face
Written communication:
- Emails
- Text messages
- Social media posts
- Letters or cards
Audio/visual:
- Voice recordings or memos
- Video messages
- Zoom meetings for distant family
Face-to-face (when you choose):
- With a support person present
- At a time and place you’ve chosen
- When you feel strong enough
“We use social media. We put it out on Facebook and Instagram, which made it really... we could tell everybody, and then we could just turn it off, and we didn’t have to talk about it constantly, and then when we felt ready, we could go in and read the comments or read the messages and respond to people.” — Parent
You don't have to do all the communication yourself
All parents emphasised: You can delegate these conversations when you need to protect yourself and your energy.
When you can delegate:
- Have a support person spread the word after diagnosis
- Let them manage logistics for gatherings
- Ask them to field questions from extended family
- Your support person can say: “This is what’s happening. They don’t want to talk right now. Give them space. Ask me questions, not them.”
“It made a huge difference, because this person, she spread the word the next day, she managed everything. So it’s one thing less to worry about and something you don’t really want to communicate.” — Parent
Through social media:
- Share announcements broadly so you don’t have to repeat individually (if you choose)
- Control the narrative by sharing what you want people to know
- Turn off notifications and respond when you’re ready
You don’t have to educate everyone personally. It’s okay to delegate when you need to protect your emotional energy.
When conversations ‘just happen’
Many conversations about your child just happen rather than through formal planning. You might be at the playground, picking up groceries, or having a casual chat when suddenly you’re explaining childhood dementia — even sometimes with a complete stranger.
You don’t owe anyone explanations. You might want to say:
- “They’re having some challenges at the moment”
- “We’re taking things day by day”
- “Thanks for asking — it’s complicated, but we’re managing”
- “I appreciate you asking. Today’s been a hard day, so I won’t go into details”
When you do want to share more:
- “Actually, things have been quite challenging...”
- “Since you’re asking, [child’s name] is dealing with some significant health issues...”
- “Actually, [child’s name] has been diagnosed with a condition called childhood dementia. I know that might sound confusing...”
“I learned to read people quickly — some genuinely want to know and can handle the real answer, others are just being polite. I save my energy for the people who really want to support us.” — Parent
Managing specific types of responses
When people are overwhelmed and shut down
Recognise the signs:
- Changing the subject quickly
- Avoiding future conversations
- Becoming distant or unavailable
- Making excuses to leave
How to respond: “I can see this information is overwhelming. That’s completely normal — it was overwhelming for us too. You don’t have to process it all at once.”
Follow-up approach: “I’m here when you’re ready to talk more. There’s no pressure, but I wanted you to know what our family is going through.”
When people become overly involved or intrusive
Common behaviours:
- Constantly asking for updates
- Giving unsolicited medical advice
- Making decisions without consulting you
- Sharing your private information with others
How to address: “I can see how much you care about our family. Right now, what we need most is [specific type of support] rather than [unwanted behaviour].”
Setting boundaries: “I appreciate your concern, but I need you to [specific boundary] because [reason].”
When people make it about themselves
Common responses:
- “I couldn’t handle what you’re going through”
- “I don’t know what I’d do”
- “This is my worst nightmare”
- Sharing their own unrelated difficult experiences
How to redirect: “This is really hard for us. What would help most is [specific support] rather than focusing on how it would affect you.”
“I understand this brings up fears for you. Right now, though, I need support for what we’re actually going through.”
When people offer false hope or miracle cures
How to respond: “I know you want to help, and hope is important to us too. Right now, we’re focused on evidence-based care and making the most of our time with [child’s name].”
“We’ve explored many options with our medical team. What helps most is support for the path we’re on, not suggestions for different treatments.”
“You may be asked to make difficult decisions about medications and treatments. Doctors and experts can help you make those choices. It’s okay to tell people they are being unhelpful if they give you unwanted or uninformed advice, or offer their contrary opinions on things you have thought carefully about and made your decisions about.” - Parent
When people want to avoid the reality
When they say, “don’t think about the future”: “Planning for the future helps us make the best decisions for [child’s name]. We can’t just ignore what’s coming.”
When they change the subject: “I understand this is hard to hear, but this is our reality, and I need people in my life who can handle talking about it.”
Self-care during difficult conversations
Emotional preparation
Before difficult conversations:
- Acknowledge that you’re about to do something emotionally demanding
- Remind yourself that you can’t control others’ reactions
- Set realistic goals for what the conversation can accomplish
- Have a support plan for afterwards
During conversations:
- Take breaks if you need them
- It’s okay to cry or show emotion
- You can end a conversation if it becomes too difficult
- Remember that you don’t have to convince anyone of anything
After conversations:
- Process what happened with someone you trust
- Do something nurturing for yourself
- Don’t judge yourself for how it went
- Remember that some people need time to process
When conversations don’t go well
Remember:
- You can’t control other people’s responses
- Some people aren’t capable of supporting you through this
- Bad reactions say more about them than about you
- You don’t have to keep trying with people who consistently hurt you or let you down
It’s okay to:
- End relationships that become harmful
- Take breaks from people who drain you
- Prioritise your energy for supportive relationships
- Change your mind about what you’re willing to share
Building your support network
Look for people who:
- Listen without trying to fix everything
- Accept your reality without denial
- Support your decisions even if they don’t fully understand
- Continue showing up even when things get harder
- Can handle your grief and fear without making it about themselves
Nurture relationships with:
- Other parents in similar situations
- Professional counsellors who understand childhood dementia
- Family members who rise to the occasion
- Friends who adapt to your new reality
- Healthcare providers who see your whole family
What other parents wish they knew
The conversations you have about childhood dementia don’t just share information — they shape relationships, build support networks, and help your family navigate this journey. Some will be among the hardest of your life. Others will surprise you with the love and support they reveal.
You are not responsible for:
- Making everyone comfortable with your reality
- Protecting others from the truth of childhood dementia
- Managing everyone else’s emotions about your situation
- Maintaining relationships that drain your limited energy
You are allowed to:
- Share as much or as little as you choose
- Change your mind about what you’re willing to discuss
- End conversations that become harmful
- Prioritise your child and family’s needs over others’ comfort — not everyone will understand this, but that is okay
- Grieve openly, even when it makes others uncomfortable
Remember:
- Your story matters — Sharing it helps others understand childhood dementia
- Your energy is precious — Spend it on people who deserve it
- Your family’s needs come first — Everything else is secondary
- You’re doing the best you can in an impossible situation
“These conversations taught me who my real family and friends were. The ones who stayed, who learned, who supported us — those relationships became deeper and more meaningful than ever before.” — Parent of child with childhood dementia
Remember: The tools and strategies in this guide continue to apply long after your child’s diagnosis and throughout your journey.
TIPS, IDEAS AND HELPFUL PHRASES FOR DIFFERENT CONVERSATIONS
You’ll find below a collection of some of the most difficult conversations with tips, ideas and helpful phrases.
The initial disclosure
Telling people about the diagnosis
This isn’t about doing it perfectly — it’s about sharing when you feel ready.
When to have this conversation: When you can, not when others pressure you to share.
How to start:
- “I wanted to let you know what’s been happening with [child’s name]…”
- “We’ve had some difficult news about [child’s name] that I’d like to share with you…”
- “I need to tell you something important about our family…”
Key points to cover:
- The basic facts about your child’s condition
- That childhood dementia affects children, not just older adults
- How this impacts your child and family currently
- What kind of support would be meaningful
- That this is life-limiting (when you’re ready to share this)
Helpful phrases:
- “I know this is overwhelming. It was for us too”
- “[Child’s name] is still the same wonderful child you know and love”
- “We’re taking this one day at a time”
- “What we need most is for people to stay in our lives”
“I wrote a long email to my extended family about our daughter’s diagnosis. It meant I could say everything I needed to without getting overwhelmed by their reactions, and they could process it privately before responding.” - Parent
If they ask about the future:
- “We’re focusing on today and making the most of our time together”
- “The future is uncertain, but right now we’re concentrating on quality of life”
- “I’m not ready to discuss that yet, but I’ll let you know when I am”
Remember: You can share this news in stages. You don’t have to explain everything at once.
Genetic counselling and family planning: These are often the most stressful conversations parents have, because you’re not just sharing information — you’re potentially changing how family members see their own future.
When to have this conversation: When family members might be at risk, when you’re making your own family planning decisions, or when people ask about having more children.
Why this is so difficult: This conversation forces everyone to confront genetic risk, reproductive choices, and the possibility that this could happen again.
With your partner about genetic counselling
How to start:
- ‘We need to understand what this means for both our families”
- “Genetic counselling will help us know what information to share and how”
With siblings about carrier status
For older siblings/young adults:
“Because [child’s name]’s condition is genetic, there’s information you should know about if you want to have your own children in the future”
If they don’t want to know: “That’s completely understandable. If you change your mind in the future, I’m here to help you access information and testing.”
If they’re angry you didn’t tell them sooner: “We needed time to understand this ourselves first. I’m telling you now because I care about you and want you to have choices.”
With extended family — when you’re ready
How to start:
- “[Child’s name]’s condition is genetic. There might be implications for our family that you should know about”
- “I want to give you information so you can make your own choices”
What you might share:
- The inheritance pattern of your child’s condition
- Who in the family might be carriers
- Available testing options
- That this information is private and personal
Important phrases:
- “There’s no pressure to get tested — this is your decision”
- “I’m here if you want to talk about it, and I understand if you need time to process”
- “Whatever you decide about testing, it doesn’t change our relationship”
- “You might want to talk to a genetic counsellor yourself”
“I will encourage it because… you are putting someone else at risk… not because you want to, because you decided knowing, not because you were ignorant.” - Parent
The unexpected burden – a reality many parents face
“We had to tell family members they might be carriers, and then some of them just… didn’t do anything with that information. It was really, really stressful watching and waiting… that was a really, really stressful piece of the whole puzzle… it lasted over a year.” - Parent
What this means:
- Some family members may not act on genetic information
- You might feel ongoing stress about other family members' choices
- Other family members' choices can be emotionally exhausting
Where your responsibility ends
- Your responsibility is to share the information
- You cannot control what family members do with it
- Their choices about testing are their responsibility, not yours
- This stress is normal, but it’s not yours to carry forever
“Once we gave the information to the people who needed it, it was then their prerogative to do with it… one of the most frustrating things is to tell everyone your story and tell everyone how it happened, and then they don’t take any preventative action.” - Parent
Managing potential stress
- Hand over to genetic counselling professionals
- You can’t force anyone to get tested
- Set a timeframe: “I understand you need time. I’m here to talk when you’re ready, but I might need to step back from this topic for my own wellbeing at some point”
- Remember, you’ve done your part by sharing information
- You might ask your genetic counsellor or doctor to contact at-risk family members directly.
“They asked me for her [sister’s] email… they deliver all the information to her, everything. And they were sending messages back… I didn’t have to worry… the other family member will also feel better, if this comes from a doctor than ‘Oh, this is my sister told me.’” - Parent
Understanding paediatric palliative care — breaking through the fear
When to have this conversation
When palliative care is recommended, when people misunderstand what it means, or when you need support for this decision.
Why this is so difficult: The words 'palliative care' can be frightening to people and make them think you’re ‘giving up’ or that the child is close to death.When people hear the term 'palliative care', they often assume it is for adults with cancer or other familiar conditions, the very old and the very sick. Paediatric palliative care is not something they have ever considered.
With family who are frightened by palliative care
How to start: “I need to talk to you about palliative care for [child’s name]. I know those words are frightening, but I want to help you understand what this really means.”
Key points to cover:
- Palliative care is about quality of life, not just end of life
- It works alongside other treatments
- It provides support for the whole family
- It helps with pain and symptom management
- It can continue for months or years
- It’s based on need, not prognosis
Helpful phrases:
- “This isn’t about giving up — it’s about adding support”
- “Palliative care will help [child’s name] be more comfortable and our family to be stronger”
- “We’re still doing everything possible for [child’s name]”
- “This gives us access to specialists who understand childhood dementia”
- “We need you to trust that we’re making the best decisions for our child”
When they say “But they’re too young for a hospice”: “Paediatric palliative care is different from an adult hospice. Many children receive these services for years while still having active treatment.”
When they think you’re giving up hope: “Our hope has changed, but it hasn’t disappeared. We hope for comfort, joy, meaningful time together, and the best possible quality of life.”
With healthcare providers who don’t understand childhood dementia:
How to start: “I need you to understand that childhood dementia is different from adult dementia, and our palliative care needs are specific to our situation.”
Key points:
- This condition is rare, even very rare, and to help us, you will need to educate yourself about it
- These children often have years of life ahead
- Symptoms and needs change over time
- Family support is crucial
- Siblings need attention too
- Respite care is essential for family sustainability
Conversations with other siblings — supporting the whole family
Siblings often carry their own complex feelings about their brother or sister’s condition, and they need age-appropriate information and ongoing support to process what’s happening in their family.
“My daughter said to me, ‘I feel like I lost my brother twice — once when he got sick, and again when everyone started treating him differently.’ That broke my heart but helped me understand what she needed.” - Parent
Starting these conversations
- “You’ve probably noticed some changes with [sibling’s name]. I want to help you understand what’s happening”
- “Do you have questions about [sibling’s name] and why they need extra help sometimes?”
- “I want to make sure you know what’s going on in our family and how you’re feeling about it”
Age-appropriate explanations
Younger children (3 to 7 years):
- “[Sibling’s name] has something called childhood dementia. It makes their brain work differently”
- “Sometimes their brain forgets how to do things it used to know”
- “It’s not catching — you can’t get it from being near them”
- “They still love you, even when they seem confused or different”
School-age children (8 to 12 years):
- “Childhood dementia affects how the brain works. It’s making some things harder for [sibling’s name]”
- “Their brain is gradually forgetting how to do things it learned before”
- “It’s genetic, which means it runs in families, but it doesn’t mean you’ll get it”
- “They might not be able to play the same games anymore, but they still enjoy being with you”
Teenagers (13+ years):
- More detailed explanation about the specific condition
- Discussion about genetic implications and testing options for their future
- Honest conversation about prognosis when age-appropriate
- Recognition of their role in the family and their support needs
- Let the sibling lead you on how much information they need to know
Ongoing conversations as the condition progresses
When abilities change:
- “You might have noticed [sibling’s name] can’t [specific ability] anymore. This is because of their condition”
- “It’s normal to feel sad, angry, or confused when you see these changes”
- “They’re still the same person who loves you, even if they can’t show it the same way”
When siblings feel left out:
- “I know [sibling’s name] needs a lot of our attention. That doesn’t mean you’re less important”
- “Your feelings matter too. Can you tell me how this is affecting you?”
- “We’re going to make sure there’s special time just for you”
- "Is there anything you need us to hear? "Is there something we haven't understood from your perspective?
Helping siblings with their own difficult conversations
- Friends asking questions about their sibling
- Curious or insensitive questions at school
- Being compared to their sibling
- Explaining their family situation
Practice with them:
- Role-play responses to common questions
- Give them language and phrases they can use
- Let them decide how much to share with friends
- Support them in setting their own boundaries
Sample phrases for siblings to use:
- “My brother/sister has childhood dementia. It affects how their brain works”
- “They need extra help with things that used to be easy for them”
- “It’s not contagious — it’s something they were born with”
- “They’re still my sibling and I love them”
Supporting siblings’ emotional needs
Validate all their feelings:
- Anger, sadness, embarrassment, guilt — all are normal
- They might feel conflicted about their sibling
- Jealousy of the attention their sibling gets is understandable
- Worrying about their own future is natural
What helps:
- Connect them with other siblings in similar situations when possible
- Consider counselling specifically for siblings
- Maintain some normal family activities and traditions
- Ensure they have relationships and activities outside the family situation
- Celebrate their achievements without guilt
When siblings worry about their own future
Age-appropriate discussion about genetic risks:
- Reassurance about their current health and wellbeing
- Information about genetic counselling when they’re older
- Focus on living their own full life while supporting family
- Understanding that carrier status doesn’t mean they’ll have the condition
Accessing carer supports and services — advocating when you’re exhausted
When to have this conversation
When to have this conversation: When applying for services, when you’re overwhelmed, or when people don’t understand your needs.
With service providers
How to start: “I’m here because my family desperately needs support caring for my child with childhood dementia. I need you to understand our situation and help us access appropriate services.”
“I had to learn to be really direct about our needs. Saying ‘we’re managing fine’ when we weren’t was actually preventing us from getting the help we desperately needed.” - Parent
Key points to cover:
- The complexity of childhood dementia care
- Your exhaustion and need for respite
- Impact on siblings and your relationship
- Financial strain from medical and care costs
- Safety concerns and supervision needs
- The need just to be a parent and spend time with your child, rather than on mundane household tasks
Helpful phrases:
- “We can’t sustain this level of care without support”
- “My child’s needs are complex and will increase over time”
- “Our whole family is affected and needs support”
- “I need services that understand childhood dementia, not just general disability support”
When services seem inadequate: “The support you’re offering doesn’t match our reality. Let me help you understand what living with childhood dementia actually means for families.”
With family about needing professional help
How to start: “I need to be honest with you about how much we’re struggling and why we need professional support.”
When family says “We can help”: “I appreciate that, but this requires specialised training and we need consistent, reliable support that doesn’t put pressure on family relationships.”
When they think you should manage alone: “Caring for a child with childhood dementia is beyond what any family can manage without professional support. This isn’t a failure — it’s recognising our child’s complex needs.”
“Our family needs support. My child has childhood dementia, and we can’t manage this level of care alone.”
Changed relationships: when everything shifts
Common experience: Relationships change after diagnosis, sometimes in painful ways.
“The amount of people who showed up and got involved… Some people who showed up with their own grief and it became about them… versus people who showed up to support us.” - Parent
When friends become distant
- “I’ve noticed we don’t connect as much since [child’s name]’s diagnosis”
- “I understand if this feels overwhelming, but our friendship matters to me”
- “I need friends who can accept our new reality, even if it’s uncomfortable sometimes”
Important note: You don’t have to initiate these conversations. If a friend has withdrawn, that might be your answer about whether they can support you through this. If they reach out later, you can respond then.
“If that person has become distant, then is it worth your energy?” - Parent
When family has unrealistic expectations
- “Our priorities and capacity have changed”
- “We might not be able to attend everything we used to”
- “I need family who can support who we are now, not who we used to be”
When they complain you’ve changed: “Yes, I have changed. Watching your child live with a life-limiting condition changes you. I need family around me who can love and support who I am now.”
It’s okay to let some relationships go
- Focus your energy on people who show up consistently
- Prioritise relationships that energise rather than drain you
- You can change your mind about what you’re willing to share
- Some people aren’t capable of supporting you through this
About the milestones of others
Important balance:
“There is nothing more isolating when people hold back things to 'protect' us… There is nothing that I would love to do more than celebrate that special milestone for someone you know that’s obviously important in our life. And no matter how that makes me feel, I never want them to stop doing that.” - Parent
But also:
- “You don’t have to hide other children’s achievements from me”
- “I can be happy for them while sad about our situation”
- “Hiding things is more isolating than painful comparisons”
- However: “Right now comparisons are really painful — please be mindful of timing and context”
The balance: You can share, but be thoughtful about how and when.
At the playground – when childhood differences become visible
Sometimes people's reactions, like staring or making comments, can be hard to deal with. Here are some suggestions for managing these situations.
Important permission: You don’t have to engage or educate everyone.
“Sometimes the best option is to just disengage and just ignore… sometimes the last thing you want to do is be like, Oh, my child has childhood dementia, and that’s why they’re playing differently. Like, sometimes the best thing to do is actually just, you know, do what you need to do and engage with your own child and family.” - Parent
When you do want to share
With other curious parents:
- “[Child’s name] has childhood dementia, which affects their development”
- “They’re not contagious — it’s genetic, not something you can catch”
- “They love being around other kids, even if they play differently”
When children ask questions:
Younger children: “Everyone’s brain works differently. [Child’s name]’s brain makes some things harder, but they still love to play.”
Older children: “[Child’s name] has a condition that affects learning and movement, but they’re still a kid who likes fun.”
When your child can’t play in traditional ways
“Many of these kids cannot play in the playground… they just need to watch, feel the breeze, see other people walking, hear people talking… when you are in movement like people are not gonna stop you.” - Parent
Remember:
- Being in community doesn’t require active play
- Experiencing the environment is valuable
- You don’t have to justify your presence
When your child is struggling publicly
If you want to respond:
- “[Child’s name] is having a difficult moment. They have childhood dementia, which can make overwhelming situations hard to manage”
If you don’t:
- “Thank you for your concern. I know how to help them through this”
- Or simply focus on your child and leave when you need to
When people react inappropriately
“We had a little girl come up to Louis… and the little girl was all interested… her mother came over and dragged her away and said, leave the baby alone… she just dragged her away like he was [contagious]…” - Parent
You’re allowed to respond directly to inappropriate behaviour:
- “He’s not contagious. It’s a genetic condition”
- “Children are naturally curious, and that’s okay”
- Or choose not to engage and protect your energy
Living with anticipatory grief – mourning while your child is still here
“I’m grieving the child my daughter was, the child she might have been, and the future she won’t have. All while loving the child she is right now. It’s the most complex emotional experience of my life.” - Parent
The word ‘mourning’ is accurate.
“I don’t think there’s anything wrong with it, because at the end of the day, that is how you’re feeling ultimately… it’s black and white… it’s the type of word that people can understand.” - Parent
When to have this conversation: When people don’t understand your grief, when you’re struggling with complex emotions, or when you need support for anticipatory loss.
Why this happens
- You’re processing loss in real time as your child’s abilities change
- You’re mourning a future that won’t unfold as expected
- You’re adjusting dreams and expectations continuously
This is normal and healthy, even though it’s painful
With close family and friends
How to start: “I need to share something that might be hard to understand. I’m grieving for [child’s name] even though they’re still with us, and I need you to understand what that means.”
Key points to cover:
- Grief for the future your child won’t have
- Grief for lost abilities and milestones
- Grief for your own dreams and expectations
- That this grief coexists with love and hope
- That this is normal
Sharing this with others
What you might say:
- “I’m grieving for [child’s name] even while they’re still here, and I need you to understand that”
- “I can love my child completely and still feel sad about what we’re losing”
- “This grief helps me process what’s happening so I can be present for what we have”
When people say “stay positive”
“The amount of times I’ve heard that and it almost devalues your feelings… one of the most unhelpful things that can be said.” - Parent
“I had a friend… trying to be positive about something… she was like, ‘you should be grateful that you might get an extra year or two’… it was one of the most hurtful things they could say, and it showed their lack of understanding.” - Parent
How to respond:
- “I can hold both hope and grief at the same time”
- “Asking me to only feel positive denies what we’re actually facing”
- “I need space for all my emotions, not just the comfortable ones”
What actually helps:
“Just listen. Just be there and say, ‘Yeah, that’s really awful. I don’t know what to say, but I feel really devastated for you’. That’s literally all you need.” - Parent
When people say, “Don’t think about the future”
- “Processing grief helps me be more present with [child’s name]”
- “I can’t pretend this isn’t happening — acknowledging it helps me cope”
- “Planning emotionally helps me make the most of today”
With your partner about different grief patterns
Key challenges:
- Different timelines for accepting reality
- Different coping mechanisms
- Protecting each other vs. sharing pain
- Managing grief while parenting
Helpful approaches:
- “There’s no right way to grieve this situation”
- “We each might need different types of support”
- “Let’s be honest about where we are emotionally, even if it’s different places”
Milestones become particularly complex when your child has a childhood dementia condition. What should be celebrations become mixed with heartbreak, and missed milestones highlight the different path your family is on.
“I love this topic because it’s something that I really struggle with, particularly at certain times of the year… I’m sure that I’m not the only person where that’s quite a big trigger point.” - Parent
When to have this conversation: Before milestone events, when people don’t understand your mixed emotions, or when you need support for difficult celebrations.
Before milestone birthdays or events
How to start: “[Child’s name]’s [birthday/milestone] is coming up, and I need to talk about what this means for our family and how you can support us.”
Key points to cover:
- Your complex emotions about birthdays/special occasions
- That celebration and sadness can coexist
- Your child might not understand the occasion in the same way as they used to
- What kind of celebration works for your family
- That some milestones feel more painful than joyful
Birthdays and special occasions
“Her birthday used to be pure joy. Now it’s this bittersweet reminder of time passing and abilities lost. We still celebrate, but it’s complicated.” - Parent
“We were told that our child had a life expectancy of 5 to 10 years when he was diagnosed at 3, so his 5th birthday was a really terrifying time for me. It meant we were entering that window.” - Parent
Before milestone events:
- “We want to celebrate [child’s name], but this milestone also highlights what we’re losing”
- “Our emotions are complicated — please don’t expect us to just be happy”
- “We might need to leave early or change plans if it becomes too much”
When people expect pure celebration:
- “We’re celebrating differently now — it’s about honouring where [child’s name] is today”
- “Joy and sadness can exist together at these events”
- “What looks like a ‘normal’ birthday party actually takes enormous emotional energy for us”
Specific difficult times:
- Birthdays
- Christmas
- New Year
- Other holidays
- Anniversary dates
‘Last’ milestones
The weight of knowing that this may be the:
- Last birthday when they understand it’s their birthday
- Last time they can walk/talk/feed themselves independently
- Last family holiday they can fully enjoy
- Last Christmas they recognise
“I found myself taking videos of everything, trying to capture moments I knew we might not have again. It was beautiful and heartbreaking at the same time.” - Parent
Sharing this burden:
- “Some milestones feel especially significant because they might be [child’s name]’s last”
- “I’m trying to be present for these moments while also grieving that they’re ending”
- “It’s hard to celebrate when you’re also saying goodbye”
When family wants to make everything ‘special’:
- “I appreciate wanting to make things meaningful, but sometimes the pressure is exhausting”
- “Sometimes we need normal moments, not everything has to be a ‘memory’”
- “Special doesn’t always mean elaborate — sometimes it just means together”
Missed milestones
The ongoing loss:
Every milestone other children reach becomes a reminder of what your child will never achieve or has lost the ability to do.
“Seeing other kids start school, learn to ride bikes, have sleepovers — it’s like a constant reminder of the parallel universe where our daughter was healthy.” - Parent
Talking about this:
- “It’s hard watching other children reach milestones [child’s name] may never achieve”
- “Social media can be particularly difficult when it’s full of developmental achievements”
- “You don’t have to hide other children’s achievements from me, but please understand comparisons are painful”
When people are insensitive:
- “I’m happy for [other child], but right now comparisons are really difficult for our family”
- “Please be mindful that typical childhood milestones aren’t happening for us”
- “I might need to step away from conversations about developmental achievements sometimes”
The importance of specific questions
Helpful for others to know:
“Specific questions with easy answers… the open-ended questions are tough. So if you know helpful things, specific questions… giving them something to agree with.” - Parent
Better questions:
- “How’s [child] going at school?” (specific, manageable answer)
- “Does [child] enjoy their siblings?” (yes/no with option to expand)
- “Isn’t it a beautiful sunny day?” (easy to agree with)
Overwhelming questions:
- “How’s everything going?” (too broad)
- “What would be most helpful right now?” (impossible to answer when exhausted)
Supporting yourself through missed milestones
- Acknowledge the grief without judgment
- Create alternative ways to mark your child’s growth
- Consider limiting exposure to milestone-heavy social media during difficult periods
- Connect with other parents who understand this unique loss
“We started celebrating different things — the day she smiled at music therapy, or managed to sit up for a whole book. Different milestones, but still worth celebrating.” - Parent
Workplace conversations – professional life meets personal crisis
Remember, you are not required to disclose your child’s condition at work. This is your choice.
You can consider:
- Work might be your only ‘normal’ space
- Other families need flexibility and understanding to be able to work
- Small business vs corporate environments differ
- Your role and relationship with your manager matters
“Work is often the only thing that you have left from pre-diagnosis life, because most people need to keep working… everything else will fall away… your work will end up being your only outlet.” - Parent consultation feedback
If you choose to share your child’s diagnosis
With your supervisor/manager:
- “My child has a progressive medical condition that will require ongoing workplace flexibility”
- “I’m committed to my work, but I need accommodations to manage family responsibilities”
- “This situation may require me to leave suddenly for medical emergencies”
Key points to emphasise:
- This is ongoing, not temporary
- Your commitment to work quality when possible
- Specific accommodations you need (flexibility, work from home)
- That you’ll communicate as best you can
Delegation at work
You can:
- Ask your manager to inform your colleagues (if you choose)
- Provide boundaries: “I’m happy to talk about it / I’m not happy to talk about it”
- Have HR handle some communications (if you choose)
Your rights
As a carer, you have certain accommodations available under Australian workplace law. If you have questions about your rights:
- Fair Work Australia has information on carer’s leave and flexible work arrangements
- Your HR department can explain specific workplace policies
- These are principles to guide you, not scripts — adapt to your specific situation and work style
RESOURCES
Childhood Dementia Initiative
- Website: childhooddementia.org
- Email: services@childhooddementia.org
- Online Community
Crisis Support
- Lifeline: 13 11 14
- Beyond Blue: 1300 22 4636
- Kids Helpline (for siblings): 1800 55 1800
For Workplace Support
- Fair Work Commission: Information on carer’s leave and flexible work arrangements
Connect and stay up to date
If your family is impacted by childhood dementia, we invite you to receive updates and learn about ways to connect with Childhood Dementia Initiative and with other families.
