It’s Dementia Action Week, and I’ve been thinking a lot about the journey my family has been on since my dad was diagnosed with dementia. There’s so much I didn’t know at the start – so much I couldn’t have known – about what this path would really look like.
I wanted to share a few reflections in the hope they’ll resonate with anyone going through something similar. Whether you’re supporting a loved one, navigating a new diagnosis, or simply trying to understand, here are some things I’ve learned along the way.
Dementia is never the same
Dementia presents differently for every person – and even for the same person, it can change from day to day. It’s not a straight line, and it’s certainly not predictable. Some days when he was living at home, my dad would feel more like himself again; on others, it felt like he was slipping further away.
It’s still hard to think about what might come next – the possibility that one day he won’t recognise me. But I try to stay in the moment and hold onto the small signs of connection when they appear.
Everyone’s experience with dementia is different. A bit like parenting, you can take comfort from other people’s stories, but know that your experience will be unique.
Ask about their memories while you can
One of my biggest regrets is not asking my dad more questions about his past. His childhood, his work, his dreams – things I always thought I’d have time to talk about.
Looking back, I realise his dementia had already progressed by the time we had a formal diagnosis. I wish I’d recorded his stories earlier – just simple voice notes or videos. I’d love to hear his voice again, talking fluently about the things he loved.
Talk to people about dementia
It took me a long time to talk openly about my dad’s diagnosis. I worried about upsetting people, or making them uncomfortable. But when I finally did share, I discovered how many others had similar experiences – and how comforting it was not to feel alone.
Not everyone will respond the way you’d hope. Some people won’t know what to say. Others will say exactly what you need to hear. Either way, opening up can be a powerful step toward connection.
You’ll need to push for support
In our experience, we often had to be the ones chasing up doctors, following up on emails, and advocating for my dad’s care. We couldn’t always rely on the system to keep us informed or coordinated.
That might reflect the current state of the NHS, but I suspect it’s a challenge in other places too. Getting proper care often requires persistence.
We also found support through our local council. An occupational therapist came to assess my parents’ home and helped make it safer and more manageable for my dad. That kind of help made a big difference.
Don’t be afraid to accept help
Sometimes we hesitated to accept support – thinking others might need it more, or feeling unsure whether it would really help. But every time we did accept it, we were so glad we had.
One of the most helpful connections we made was with an Admiral Nurse. Just having someone to speak to – someone who truly understood – was incredibly reassuring.
Caregiving is rewarding, but it can be exhausting too. If you’re in that role, please try to look after yourself. You can’t pour from an empty cup.
Sometimes just holding hands is enough
As my dad’s ability to speak and engage declined, I often didn’t know what to do during visits. Conversation became difficult. Walks weren’t always possible.
But I’ve learned that just being there matters. Sitting beside him, watching TV, holding his hand, or giving him a hug – it doesn’t need to be more than that. Presence itself is powerful.
You’re not alone
Dementia can feel incredibly isolating, but there is support out there. Whether it’s through healthcare services, charities, or simply conversations with people who’ve been there too – connection matters.
If you’re looking for support or information, these resources can help:
I’ve also taken comfort in reading memoirs about other people’s experiences of dementia. Wendy Mitchell is amazing. I’ve also written a blog post about three books about having a parent with dementia that resonated with me.
If this post speaks to your experience – or someone you love – please feel free to share it. Sometimes, knowing you’re not the only one navigating this difficult path makes all the difference.
dementia in the family 
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