Advice

Sharing your practical carer-to-carer advice

Document the everyday

Advice from Jill, Alzheimer’s Society supporter:

'My advice would be to keep a note of your daily routine, things like how many times you’ve been up in the night, so you can spot changes. 

'I cared for my husband through Lewy body dementia, and having a simple system to record things meant I could easily share what was going on with the professionals supporting us. 

It really helped relieve the feelings of guilt that it’s hard to avoid as a carer – I could read back through the notes and realise I’d done absolutely all I could.

Find reasons to celebrate

Advice from Tiffany, Alzheimer’s Society supporter:

My top tip is to continue to enjoy life together as much as you are able to. 

'Don’t allow this disease to stop you celebrating. We nearly didn’t do anything for my dad’s 80th birthday, but then decided to have afternoon tea. 

'My mum hired a local singer and my dad had an amazing time, dancing with his family and friends. Sadly we lost him in October 2024, just a few months after his party, but it meant we now have wonderful memories of him thoroughly enjoying himself.'

Support their independence

Advice from Toto2, Dementia Support Forum member:

'My brother was Mum’s main carer, and thought he was being 'good' doing most things for her. We learnt that, actually, he was taking away the little bit of independence she did have.

'Helping "too much" just seems to take away the little pleasures people have, when they’re able to achieve something that they’ve always been able to do. 

Mum got a sense of achievement and happiness that she could still do certain things. 

'So we learnt to give her a chance, and if she couldn’t manage then we’d step in.'

Small gestures can offer great reassurance 

Advice from Yankeeabroad, Dementia Support Forum member:

'I answer some of my mum’s questions several times, so she has time to really understand – it gives her a sense of security or control. If she needs reassurance then I also use distraction; let's go for a walk, get an ice cream, a cup of tea etc. Or I’ll say, “let's try to figure it out together.”

Sometimes a simple hug or hand-holding helps. 

'It can make her less jittery, or help overcome a moment of confusion.'

Remind yourself of the fun moments

Advice from Ellie, Alzheimer’s Society supporter:

'It really helps me to create a ‘golden list’ of the positive times. Sometimes, when caring for my Gran all feels a bit much, I remind myself that parts of this awful situation are nice and even funny.

'I have a list on my phone of positive things I’ve noticed as she’s changed over the last year: like she’s forgotten that her favourite film is Mamma Mia so every time we watch it, she smiles like it's the first time she is seeing it.

Caring for someone with dementia can be really overwhelming, it's important to just take a minute and have a giggle.