10 Lessons from a Dementia Caregiver
When Kathy Anderson began caring for her mum, Ronnie, she didn’t have a roadmap.
Like many carers, she learned through experience — adjusting, figuring things out as she went, and doing her best in situations no one ever really feels prepared for.
These lessons come from real moments. They’re simple, honest, and rooted in what actually helps day to day.
1. The early signs can be subtle
For Kathy, it wasn’t anything dramatic at first. Her mum struggled with small tasks, like opening a bottle of wine, and began hoarding items around the house.
These changes can be easy to dismiss or explain away.
What this means for you:
Trust your instincts if something feels “off”
Look for patterns, not one-off moments
Keep a note of changes — this can help when speaking to a GP
Early recognition doesn’t change everything overnight, but it can help you prepare sooner.
2. Communication at work matters
Balancing work and caregiving is one of the biggest pressures carers face.
Kathy chose to be open. At the start of meetings, she’d explain that she might need to step away if her mum called.
Most people were understanding.
What this means for you:
You don’t have to share everything, but sharing something helps
Set clear expectations early
Ask about flexible working options if you need them
You’re not asking for special treatment — you’re asking for support to manage a real responsibility.
3. Learn as much as you can (but pace yourself)
Understanding dementia can make things feel less overwhelming. It helps you respond with intention rather than reacting in the moment.
But it’s easy to fall into information overload.
What this means for you:
Focus on what’s relevant right now
Learn in small chunks — you don’t need to know everything at once
Use trusted sources and support organisations
Knowledge builds confidence, but you don’t need to have all the answers straight away.
4. Distraction is powerful
When confusion or distress sets in, logic doesn’t always help.
Kathy found that distraction — showing photos, playing music, or changing the activity — worked far better.
What this looks like in practice:
Switching from a stressful task to something familiar
Using music from their younger years
Offering a simple activity like folding laundry or looking through photos
You’re not avoiding the situation — you’re gently guiding it somewhere calmer.
5. Don’t correct — enter their reality
This can feel counterintuitive.
If your loved one says something that isn’t true, your instinct might be to correct them. But this can cause confusion, frustration, or even distress.
Instead:
Acknowledge how they feel
Respond to the emotion, not the accuracy
Gently go along with their version of events where possible
For example:
Instead of “That’s not right,” try:
“That sounds important — tell me more.”
It’s not about agreeing — it’s about keeping them calm and safe.
6. Accept help (even if it feels uncomfortable)
Many carers feel like they should be able to do everything themselves.
Kathy learned that accepting help wasn’t a failure — it was necessary.
What this might look like:
Family members helping with visits or errands
Friends checking in or offering practical support
Joining a support group (online or in person)
Even small amounts of help can take pressure off. You don’t have to carry everything alone.
7. Keep things simple
As dementia progresses, complexity becomes overwhelming.
Simple routines, clear choices, and familiar environments make a big difference.
Practical ways to simplify:
Stick to consistent daily routines
Offer two choices instead of open-ended questions
Break tasks into small, manageable steps
Simple doesn’t mean less meaningful — it often creates more calm and clarity.
8. Create small moments of joy
Not every day will feel positive. But within difficult days, there can still be small, meaningful moments.
Kathy focused on doing simple things together that brought comfort.
Examples:
Listening to music together
Sitting outside with a cup of tea
Watching a familiar TV show
Looking through old photos
These moments might seem small, but they help maintain connection — and that matters more than anything.
9. Stay connected (even when it’s hard)
Caregiving can become isolating very quickly.
You might feel like no one fully understands what you’re going through — or that it’s easier to withdraw.
But isolation makes everything heavier.
What helps:
Keeping in touch with at least one trusted person
Speaking to others in similar situations
Letting people in, even in small ways
You don’t need a big support network — just a few people who understand or are willing to listen.
10. You’re learning every day — and that’s enough
There’s no perfect way to care for someone with dementia.
You’ll have days where things go well, and days where nothing seems to work.
That doesn’t mean you’re doing it wrong.
What matters most:
Showing up
Adapting as things change
Being patient — with them and with yourself
You’re learning in real time, in a situation that constantly shifts.
And that’s more than enough.
A final thought
Caring for someone with dementia is one of the most emotionally complex roles you can take on.
It asks a lot of you — practically, mentally, and emotionally.
But within that, there are still moments of connection, understanding, and even joy.
You don’t have to do everything perfectly.
You just have to keep going, one day at a time.
