World Lewy Body Day
When a Dementia Diagnosis Changes Everything: Understanding Lewy Body Dementia
Raising Awareness, Supporting Families, and Delivering Person-Centred Dementia Care
“The tests show changes in your thinking that suggests Alzheimer’s. We want you to know that we’re here for you.”
It feels hot in here, the sweats dripping down my forehead and my eyebrows feel wet. The doctor looking at me but she’s quite far away, she looks confused as if she’s waiting for me to tell her something. She looks like she’s spinning a bit, in fact the whole surgeries spinning now I look around, but I didn’t sleep much last night, so I’m probably just a bit tired. I’m trying to focus, for the sake of this lady sat next to me. I don’t recognise her, but she’s crying, and she looks like she needs comforting more than I do. My hand’s shaking, but I reach out and rest it on her shoulder.
“Are you alright love?” I ask.
She nods and wipes her eyes, “I’m just thankful we’ve finally got a diagnosis for you Dad.”
That’s when it clicks, it’s Lucy, my daughter, by my side.
Fast forward a few months, after even more assessments, countless tests, and many sleepless nights, everything changed. It wasn’t Alzheimer’s at all. It was Lewy body dementia.
I’d never heard of it, but suddenly everything started to make sense. The hallucinations I couldn’t explain, the vivid dreams, the confusion, the sleepless nights, the shaking, the sweating. Everything just added together. Things didn’t necessarily change for me medically, but my family looked lighter. Happier. Relived.
Why Does a Dementia Diagnosis Matter?
Lewy body dementia is often misdiagnosed. Many people are first told they have Parkinson’s because the tremors, stiffness and mobility problems look so similar. But in Lewy body dementia, these physical changes usually appear after the problems with thinking and memory, not years before, as they do in Parkinson’s. It can also be mistaken for Alzheimer’s, especially early on, when the symptoms overlap. But as Lewy body dementia progresses, its impact on movement becomes more noticeable, helping to set it apart.
Sometimes a delay in diagnosis can mean the wrong support, the wrong medication, and a lot of uncertainty for families.
Understanding Lewy Body Dementia: Key Symptoms and Differences
Lewy body dementia is one of the most common types of dementia, yet it remains under-recognised. Key symptoms include visual hallucinations, fluctuating alertness and attention, sleep disturbances, and movement problems similar to Parkinson’s. Unlike Alzheimer’s, where memory loss is often the first and most prominent symptom, Lewy body dementia presents a mixture of cognitive changes and physical symptoms, making it challenging to diagnose but vital to recognise.
Raising awareness of Lewy body dementia is essential. Even if we reach just one more person, we increase the chances of someone recognising the signs sooner. You know your loved one best, and by helping the wider public understand Lewy Body Dementia, we can support more people to seek the correct diagnosis and the right care at the right time.
Key symptoms of Lewy body dementia:
- Visual hallucinations
- Sudden changes in alertness or attention
- REM sleep behaviour disorder
- Tremors, rigidity and slowed movement
- Severe sensitivity to some dementia medications
Dementia Care and Support at Maria Mallaband Care Group: Our Person-Centred Approach
At Maria Mallaband Care Group (MMCG), we are not here to diagnose you. Our nurses, carers, dementia ambassadors, lifestyle teams, chefs, and every member of our teams across MMCG share one purpose: to understand you.
We support people in many different situations. We care for people who just want that little extra hand while maintaining their independence, to those who need or prefer more comprehensive support. We care for people living with many different types of dementia, including Lewy body dementia, Alzheimer’s, Vascular dementia, Frontotemporal dementia and more. And for every single person, we tailor our care, approach, communication style, and lifestyle activities to what you need.
No two people experience dementia in the same way. That is why no two people deserve the same generic approach or care.
We pride ourselves on having person centred, individualised care at the heart of everything we do. Meaning, we see everyone as who they are, behind the diagnosis, their story, their strengths, their routines, their fears, what makes them happy and what makes them, them. It means meeting every single person where they are and providing individual support to everyone who lives with us.
Raising Awareness of Lewy body dementia: Making a difference together
If more people knew about Lewy body dementia, fewer families would go through the confusion of a misdiagnosis. Fewer people would feel misheard or misunderstood. And more people would get the support that truly fits them.
The Next Steps After Receiving a Dementia Diagnosis
If you are considering what the right support might look like for you or your loved one, our care enquiries team is here to talk things through and help you explore your options in our care follow: Find a care home | Maria Mallaband