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Hope and Heartbreak: Navigating Lewy Body Dementia with Compassion

I have had experience with most forms of dementia in one way or another, whether thats when working or through home life. Dementia came into my life when our first Grandparent got diagnosed with Alzhiemers now over 20 years ago. A lot has changed since then and it's been great to see the work, research and practice around dementia improve over the years.


But just lately, I've started working with a lady who has Lewy Body dementia, not a form I had come across before, it's been a learning curve for sure. My client, let’s call her Margaret, is an incredible woman. She has moments where she’s her usual, sharp-witted self—cracking jokes, sharing stories from her past, and having deep conversations. But those moments don't stay around for long. It’s like she’s right there, and then she’s not. Lewy body dementia is a cruel condition in that way; it tricks you into thinking everything is normal, only to snatch it away again.


Her husband, let’s call him John, is a kind and loving man. You can see the toll this takes on him. One day, as we were chatting over a cup of tea, he told me something that truly hit me.


He said, "You know, every time she’s herself again, I get this surge of hope. I think, ‘Maybe she’s getting better.’ But then… reality hits. And I know that’s not going to happen."


His words broke my heart because, despite knowing the reality of her condition, he still clings to that hope. And I understand why.


When Margaret is lucid, it’s like a glimpse of the person she was before dementia began to steal her away. But those glimpses are like sunshine peeking through the clouds—brief, and quickly gone. Sometimes it may just be minutes, sometimes shes back for a full afternoon. I could see how much it hurt him to be reminded again and again that this isn’t something she will recover from.


In this line of work, you can’t help but feel for the families. Their love and devotion is easy to see, but so is their pain. And as a carer, you want to do everything in your power to ease that burden, even if it’s just by being there to listen. It’s not just about providing physical care; it’s about being there for those moments of grief, for those hard conversations, and offering a shoulder to lean on when hope feels both near and impossibly far.



Caring for someone with Lewy Body dementia, or any condition that challenges both mind and body, is no easy task. It’s emotionally complex, often heartbreaking, but it’s also incredibly meaningful. As carers, we are not just helping with daily tasks; we are offering comfort, understanding, and a sense of stability in an ever-changing world for both the person we care for and their families.


If you're already a carer or thinking about becoming one, remember this: you have the power to make a difference, to be that calm in the storm. Embrace the journey with empathy and resilience. Be the incredible carer who sees the person behind the condition. It’s not always easy, but it’s always worth it. Let's step up, together, and be the carers our clients deserve.


Are you ready to be an incredible carer?

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