What Real Carers Say About Dementia Care — And What It Teaches Us

Caring for someone living with Dementia is often described as a journey.

 

But if you ask carers what that journey really feels like, you don’t get neat answers.

·       You get fragments

·       Emotions

·       Memories

·       Examples

 

Recently, I came across a dementia support group where carers were asked to share their tips, tricks, and advice.

 

What followed wasn’t a checklist. It was something much more honest.

 

As an Occupational Therapist, former professional carer, and daughter who cared for my mum, I read through every response carefully.

 

And what stood out wasn’t just what carers do — but how they think, adapt, and cope.

 

This blog is a reflection of that.

 

There isn’t one “right way” to care

 

One of the clearest things that came through is this:

 

There is no single right way to care for a loved one living with dementia.

 

Carers shared different approaches, sometimes even opposite ones — and many of them were right.

 

Some focused on routine and structure:

·       using whiteboards

·       writing reminders

·       keeping consistent daily patterns

 

Others leaned into flexibility:

·       going with the flow

·       adapting moment by moment

·       letting go of expectations

 

From an OT perspective, this makes complete sense! Dementia is not predictable. What works today may not work tomorrow.

 

The goal isn’t perfection — it’s finding what works for your loved one, in your situation, at that moment.

 

“Enter their world” — a message that came up again and again. 

If there was one theme repeated more than any other, it was this: don’t try to bring them into your reality, go into theirs! 

Carers described:

·       not correcting inaccurate memories

·       avoiding phrases like “I’ve already told you”

·       responding to feelings rather than facts

This is something we often teach as clinicians — but family carers live it every day. 

Because the truth is:

·       correcting doesn’t reduce confusion

·       it often increases distress

·       and it can damage connection

What matters more is:

·       reassurance

·       emotional safety

·       feeling understood

This approach isn’t about “agreeing with everything.” It’s about choosing connection over correction.

 

Love, patience, and repetition are not clichés — they are care. Words like patience, kindness, and love came up repeatedly. It might sound simple. But anyone who has done this caring role knows: these are not soft words — they are hard-earned skills.

 

Carers spoke about:

·       answering the same question dozens of times

·       staying calm when faced with aggression or confusion

·       holding their loved one’s hand through moments of fear

 

From a professional perspective, this is emotional labour at its highest level, and it’s important to say this clearly: if you are finding this hard, you are not doing it wrong. You are doing something incredibly demanding.

 

Small practical strategies make a big difference

Alongside the emotional side, family carers shared very practical tips that reflect excellent instinctive care:

·       using music to calm and connect

·       offering their loved one to do simple tasks like folding laundry

·       keeping their favourite snacks visible and accessible

·       using clocks, calendars, and visual cues

·       maintaining familiar routines

These small adjustments are exactly what occupational therapy focuses on: changing the environment and the task to support the person, not forcing the person to adapt.

Often, it’s these small changes that:

·       reduce anxiety

·       maintain independence

·       prevent distress

·       make the biggest changes and the aha moments.

 

The emotional reality: grief, guilt, and exhaustion

Not all responses given by the family carers were tips or breakthroughs. 

Many were honest expressions of:

·       exhaustion

·       loneliness

·       frustration

·       grief

Carers spoke about:

·       lack of support

·       financial stress

·       feeling “on their own”

·       struggling with sleep

·       navigating difficult behaviours

Some shared heartbreak:

·       being unrecognised by a loved one

·       watching personality changes

·       reaching the point of needing a care home

This matters. Because behind every tip offered is a person trying to cope. 

 

One of the most important messages was: ask for help early!

 

Another theme that came through strongly was this: don’t wait until the crisis point.

 

Carers repeatedly encouraged:

·       setting up Lasting Power of Attorney early

·       learning about the condition

·       reaching out to services

·       joining support groups

·       accepting help when it’s offered

 

This aligns closely with what I share in my own resources, including knowing who to ask for help can make a significant difference to both safety and well-being. The earlier the support is in place, the more options you have.

 

What this teaches us (as carers and as professionals)

Reading through all of these responses, a few things become very clear:

·       Dementia care is deeply human, not just clinical

·       Carers develop incredible skill through lived experience

·       Emotional connection matters as much as practical support

·       There is strength in community and shared knowledge

And perhaps most importantly: you don’t have to figure this out alone.

 

What this means for you as a family carer 

Reading through all of these responses, it is evident that:

·       Every caring situation is different.

·       Every person is different.

·       Every day can feel different.

 

Dementia brings its own challenges — particularly around memory, communication, and behaviour. But at the same time, many of the foundations of caring remain the same across conditions:

·       keeping someone safe

·       supporting movement and daily activities

·       reducing risk of falls or injury

·       maintaining dignity and independence

·       knowing when to step in and when to step back

 

These are the areas where family carers often feel most unsure — not because they don’t care, but because they haven’t been shown how to do it safely.

 

Remember, you don’t have to figure it all out alone!

 

So many carers in that group spoke about learning through experience — often through trial and error. And while that’s part of the journey, it can also feel overwhelming and isolating. Having clear, practical guidance can make a real difference: 

·       helping you feel more confident

·       reducing risk for both you and your loved one

·       and making everyday care feel more manageable

 

If you’d like more structured, OT-led support, you can explore the Handlewell Carer’s Toolkits, the standalone guide Supporting Someone with Washing and Bathing or the free resources available in the Handlewell Resources Library. 

They focus on the core skills of caring at home — the things that apply across many conditions, including dementia.

 

A gentle invitation 

If you’re reading this as a family carer, you might recognise some of these experiences — or have your own ways of coping that others could learn from. 

You’re very welcome to share:

·       what has helped you

·       what you’ve learned along the way

·       or even what you’re still finding difficult

 

Because one of the most powerful things in caring is this: learning from others who truly understand.

 

A few final thoughts 

Caring for someone living with dementia is not straightforward. It asks a lot of you — emotionally, physically, and mentally. There is no perfect way to do it, but there is a safer, more supported way. And step by step, with the right guidance and support, it can feel more manageable. 

You’re doing something incredibly important, and you don’t have to do it alone!

 

*The image is a word cloud created based on the family carer's responses