Part 2: The Diagnosis

 

To help understand the diagnosis more I want to to take the time to explain:

  • What is Lewy Bodies Dementia?
  • What causes it?
  • Symptoms associated with LBD
  • What are the 7 stages of LBD?
  • Grandma's personal diagnosis and what it then meant for her and us

What is Lewy Bodies Dementia and what causes it?

Lewy body dementia, or LBD, is what happens when tiny protein deposits - Lewy bodies - start building up in the brain. No one really knows why they form, but what they do is quietly devastating. They throw off the brain’s delicate balance by disrupting chemicals like dopamine and acetylcholine, these are the chemicals that help us move, think, and remember.

 

When those chemicals drop, everything changes. The body doesn’t move the way it used to as the brain and the body can't communicate properly to each other, thoughts become tangled, and familiar faces can suddenly feel like strangers. I’ve seen it firsthand with Grandma - the confusion, the flickers of clarity, the moments when she’s herself again. Her walking into a room and freezing her brain not being able to communicate that her legs need to move to get her to sit down again. It’s a cruel kind of thief, this disease - it takes things slowly, piece by piece, until you start to forget what “normal” even looked like.

 

Symptoms Associated with LBD

Lewy body dementia (LBD) doesn’t just touch one part of a person, it weaves its way through both mind and body, changing things in ways that can be hard to put into words.

 

Thinking and memory often take the first hit. Numbers stop making sense, decisions become harder, and simple tasks suddenly feel like puzzles missing half the pieces. Concentration, planning, and remembering these are all the little things we take for granted, just start slipping away.

 

Then there’s the body. Movements slow down; steps become shorter, shakier. Balance goes, and with it, confidence. Muscles stiffen, hands tremble, and even writing or speaking can turn into a struggle. Watching someone you love shuffle where they once strode is heartbreaking. This can then lead to them eventually freezing or stopping and not being able to take their next step forwards. 

 

Sleep becomes another battleground. Dreams turn vivid - sometimes acted out in the middle of the night. Days and nights blur, and sleep itself becomes unpredictable, restless, and often out of reach.

 

And then there’s the mood - the part that hits hardest because it changes the person you know. Depression, anxiety, paranoia, and moments of pure confusion take turns stealing the spotlight. Sometimes Grandma would pace the room or repeat a phrase over and over, lost somewhere I couldn’t reach. It’s not stubbornness or attention-seeking - it’s the disease talking.

 

Even the nervous system isn’t spared. LBD can throw off how the heart, glands, and muscles work, creating strange, unexpected symptoms that make you feel like you’re chasing a moving target.

 

All these signs and struggles can appear at different times, depending on the stage of the disease. In the next section, we’ll walk through the seven stages of Lewy body dementia - what they look like, how they feel, and what families like ours can expect along the way.

What are the 7 stages of Lewy Bodies Dementia?

Lewy body dementia doesn’t move in a straight line it ebbs and flows, good days and bad days, moments of clarity followed by confusion that hits like a wave. Still, doctors and medical professions still often describe its journey through seven stages, a kind of roadmap to help make sense of what’s happening, even though no two journeys ever look exactly the same.

 

Stage 1 - No cognitive decline:

Stage 2 - Very mild cognitive decline:
Tiny changes start creeping in - a missed appointment here, a lost word there. Things that could easily be brushed off as “just getting older.

 

Stage 3 - Mild cognitive decline:
This is when the fog starts to settle in. Planning, remembering names, or following conversations becomes trickier. You start to sense that something isn’t quite right, even if you can’t yet name it.

 

Stage 4 - Moderate cognitive decline (often where diagnosis happens):
The changes are now more noticeable. Everyday tasks such as managing money, keeping track of time, following recipes can all become a real struggle. This is often when doctors start putting the pieces together and an official diagnosis enters the picture.

 

Stage 5 - Moderate to severe cognitive decline:
Daily life starts to need more support. Confusion deepens, routines are forgotten, and help with things like dressing or eating becomes necessary. It’s a stage where patience and understanding become your greatest tools.

 

Stage 6 - Severe cognitive decline:
Personality shifts, memory loss, and physical symptoms intertwine. The person you love is still there, but hidden behind the haze. It’s an emotional stage, one that tests every ounce of love and strength you’ve got.

 

Stage 7 - Very severe cognitive decline:
In the final stage, communication fades and movement becomes extremely limited. It’s a time for comfort, gentleness, and presence. Even when words fail, love doesn’t.

 

It’s important to remember that LBD DOES NOT follow a strict script. Some people move through these stages quickly, others much more slowly. Symptoms can vary in intensity and order - which makes every person’s journey unique, and every family’s story its very own.

Stage One: No Cognitive Decline

Stage one of Lewy body dementia is often the quietest, the one that can slip under the radar, subtle changes and often totally unseen. To everyone else - including family and even doctors - life may seem completely normal. Your loved one continues with daily routines, smiling, chatting, going about their day, and there may be no obvious signs of anything amiss.

But sometimes, if you look closely, tiny changes can start to appear. Some people in this stage experience mood shifts - increased anxiety, low-level depression, or restlessness. Sleep patterns might be a little off, or they may seem more fidgety or unsettled than usual. Cognitive changes can also sneak in: small struggles with making decisions, recalling certain events, or finding the right words.

Physical signs can be equally subtle. A slight tremor in the hands, minor stiffness in muscles, or slower movements might be noticeable but only if you’re paying careful attention.

In some rare cases, even in this earliest stage, hallucinations or sudden mood changes may appear. These instances are uncommon, but they’re a reminder that LBD can show up differently in everyone.

Early-stage symptoms of LBD can look a lot like Alzheimer’s or Parkinson’s, which makes them easy to miss. This is why checking in with your healthcare professional is so important. Even if everything seems normal, scans like MRI or CT during routine check-ups can sometimes pick up changes early. And an early diagnosis isn’t about fear, it’s about giving you and your loved one the best chance to slow progression and maintain quality of life for as long as possible.

Stage Two: Very Mild Cognitive Decline

Stage two of Lewy body dementia is when subtle signs start to become just a little more noticeable, though to an outsider, life may still look normal. Often called mild cognitive impairment (MCI), this stage affects thinking skills like memory, language, and problem-solving. Your loved one might forget names, misplace familiar objects, or struggle with words they usually know well.

Tasks that require focus or juggling multiple things at once can become tricky. Completing a crossword, remembering a shopping list, or keeping up with daily routines may require a bit more effort than before.

The good news is that independence is usually still intact. People in this stage can generally manage their daily activities without help. But even these very mild changes are important to notice, they can help doctors differentiate LBD from Alzheimer’s or Parkinson’s disease, which is crucial for planning care and treatment early.

Although stage two is still subtle, it’s a time to pay attention and check in. Early recognition allows families and loved ones to start building routines and strategies that can help maintain quality of life for as long as possible. 

Stage Three: Mild Cognitive Decline Becomes Noticeable

Stage three is often when the changes of Lewy body dementia start to feel more real, not just for the person experiencing them, but for the family around them too. Memory lapses become more apparent, concentration falters, and problem-solving skills start to slip. Everyday tasks, especially more complex ones like managing finances or keeping track of medications, may begin to require support.

Mood changes can also become clearer. Anxiety, depression, and a general sense of apathy about life might appear. Frustration or emotional outbursts can happen - not because your loved one is being difficult, but because the disease is making even simple things feel overwhelming. During these moments, staying calm and patient is one of the most powerful things you can do for them… and for yourself.

Physical changes may start to show up too. With a higher risk of falls and slower co-ordination, normal routines can become trickier. Yet, with the right support, care, and understanding, people living with LBD can still enjoy meaningful interactions, hobbies, and moments of joy. Stage three may be a step into more noticeable decline, but it’s also a time to focus on connection, patience, and planning ahead.

Stage Four: Moderate Cognitive Decline & Diagnosis

Stage four is often a turning point. This is the stage where Lewy body dementia becomes much more noticeable, both to the person experiencing it and to those around them. Everyday tasks like dressing, bathing, eating, problem-solving, and communicating can start to feel overwhelming. It’s at this stage that many people receive a formal diagnosis, as the cognitive changes are clearer and more consistent.

Mood and behavior changes can become more pronounced. Your loved one might feel agitated, confused, or even paranoid at times. Yet, amidst these changes, many can still recognise family and friends, and some are able to communicate coherently, sharing thoughts and memories that remain intact.

Physical challenges also become more obvious. Tremors and stiffness may make simple movements difficult. Swallowing can become tricky, and drooling or the risk of choking may occur, making supervision and support increasingly necessary. Sleep patterns can shift too, with more daytime sleeping, though hallucinations may lessen compared to earlier stages.

For caregivers, family, and respite workers, this stage calls for extra patience, understanding, and gentle support. Your loved one is navigating a world that feels increasingly confusing, and your presence needs to be one of calm, steady, and compassion to make a meaningful difference in their daily life.

Stage Five: Moderate to Severe Cognitive Decline

By stage five, the effects of Lewy body dementia become much harder to ignore. Cognitive decline is now more significant, and everyday life starts to feel challenging for your loved one. Simple tasks such as communicating, managing routines, or making decisions, can become confusing and overwhelming. Memory loss deepens, and disorientation can be a constant companion.

Recognition of family and friends may begin to fade, which can be heartbreaking. At this stage, your loved one will rely more heavily on caregivers, family, and friends to provide a safe, supportive, and loving environment. Support with eating, personal care, and daily routines becomes essential, as independence diminishes.

Other symptoms may also appear or intensify, including delusions or hallucinations, which can cause paranoia or heightened confusion, and a higher risk of infections, fever, or skin issues.

This is a stage where love, patience, and attentive care become the top priority. Your presence, reassurance, and structured support are not just practical necessities but they are anchors that help your loved one feel safe and valued in a world that is increasingly uncertain.

Stage Six: Severe Cognitive Decline

Stage six is when Lewy body dementia becomes profoundly noticeable, and the support your loved one needs increases significantly.

Communication and recognition of family and friends may fade, and memory of recent events can disappear, sometimes leaving only early-life memories intact. Personality changes can become pronounced, and incontinence, difficulty speaking, and challenges with basic movements like sitting or walking are common.

This stage often requires full-time care, as your loved one may not be able to manage daily life without constant support. Agitation, aggression, or hallucinations may occur, though there can still be fleeting moments of clarity - brief instances when familiar voices or surroundings spark recognition and connection.

Even amidst the severity, it’s important to remember that your loved one can still experience comfort, joy, and connection. Gentle reassurance, familiar routines, and compassionate presence can help them feel safe and valued, even when much of the world around them feels confusing or distant.

Stage Seven: Very Severe Cognitive & Physical Decline

Stage seven is the final stage of Lewy body dementia, marked by profound changes in both mind and body. Memory can be almost completely gone, communication may be lost, and basic daily activities - even eating or moving - often require constant support. Mobility decreases, confusion can intensify, and round-the-clock care is usually necessary.

Despite the intensity of symptoms, life at this stage can still hold moments of meaning and connection. With the right memory and dementia care, families can focus on comfort, reassurance, and gentle engagement, allowing their loved one to experience calm, dignity, and even small joys. Palliative support becomes key, ensuring that every day is approached with compassion and attention to comfort.

This stage is emotionally challenging, but it’s also a reminder of the importance of presence, love, and compassion - even when words are gone and independence is lost. Your care and attention continue to make a profound difference, providing safety, comfort, and a sense of being truly seen and valued.

Grandma's Diagnosis 

Eventually, Grandma was diagnosed with Lewy body dementia - not Parkinson’s, but the dementia itself. Having the diagnosis helped make sense in a way for us as a family. She had not recovered from the delirium from the initial UTI and whilst we all speculated we think she had dementia by this point it just helped knowing for sure and to know the type as well. To walk away knowing now the next steps would be so what do we do next to help her.

 

At the time Grandma was diagnosed I personally thought she was already at stage three however other family members felt it was more stage two. In all honestly there isn't a lot of difference between two and three in my opinion and I think for a lot of people these two stages can really blur and could be a combined one stage.

 

When Grandma was diagnosed and she lost her trail of thought in a conversation and got frustrated I remember talking to her about the diagnosis for the first time. She said "I'm not sick. I'm just old! What do them young doctors know about life they haven't even lived yet!" She was extremely short, dismissive and matter of fact about it. At no point did she ever admit to having Lewy Bodies Dementia or said it allowed. I like to believe later she knew but she never accepted the diagnosis, not out loud, not to me anyway. 

 

Hallucinations became part of her day-to-day, and quite honestly hallucinations started becoming the norm at times. Grandma would talk to hallucinations called Head, Arm and Leg. She was caught on camera telling one of them off, I think it was Head that he "should be using an ashtray, look at the mess he was making". The hallucinations would never seem to be scary or harmful to her though, often more portrayed as company and companions like a child would have an imaginary friend she had her hallucinations. If anything at times the hallucinations would annoy her telling carers "and take that lot with you" as they left or threatening to throw a coke can at an invisible cat that was staring at her to much. 

 

One of the hallucinations I’ll always remember - and probably my favourite, if you can call it that - was when Grandma told me she saw a seven-foot man trying to get into a Morris Minor. Classic, right? Except she was sitting in the back room, which didn’t even face the street… and he wasn’t breaking in. Nope, he was just getting into his car like any normal bloke on any normal day. The way she described it, with every little detail, was like she was curtain-twitching a full-blown action blockbuster. Honestly, if you hadn’t seen the cameras showing she was in the back room, you’d have genuinely believed she’d been watching the whole thing unfold. I got off the phone and laughed so hard at the sheer absurdity of it all. The next time I visited, I genuinely braced myself, half-expecting to see him at the top of the road doing the exact same thing as I parked my own car - just casually carrying on like nothing had changed. 

 

Even in the early stages of her diagnosis, Grandma was considered a high-risk faller. Over time, her movement became slower and more deliberate. Some days, she managed perfectly well without her walker, moving with a surprising independence, but as time went on, those days became less frequent, and she gradually became more reliant on it. The walker became a steady companion, giving her the support and confidence to move safely, while we put other safety measures in place. But, as you will read, falls still happened - a reminder that even the best precautions couldn’t eliminate all risks.

 

Grandma’s sleep schedule became its own kind of rhythm. She started napping more during the day, but come midnight, she often took her own little strolls around the house. With the kitchen off-limits for safety, we set up a grazing table in the living room, and most nights she could be spotted wandering over, quietly helping herself to the snacks we’d laid out. Those midnight excursions became a kind of charming, if unexpected, routine - a reminder that even in her quieter moments, Grandma had her own sense of adventure.

 

Grandma’s moods could flip like a light switch. Some family members brought out her funny, chatty side, full of laughter and stories, while others seemed to awaken a darker, feistier streak, sharp words, stubborn refusals, and a healthy dose of attitude. It became something of a family inside joke: know who to approach carefully, and you might just avoid the wrath of Grandma at full force. Even in those moments, though, it was clear she was still very much herself - strong-willed, opinionated, and impossible to ignore.