Challenging symptoms of dementia with Lewy bodies

There are a number of challenging symptoms in the earlier stage of dementia with Lewy bodies which has a greater impact than other types of dementia.

Some of these symptoms are unique to dementia with Lewy bodies while other symptoms do appear in other types of dementia, but not until much later in the progression of the disease. So the loss of independence occurs much sooner for people with dementia with Lewy bodies than in other types of dementia.

What are the first signs of dementia with Lewy bodies
Loss of independence occurs early in dementia with Lewy bodies.

What are the first signs of dementia with Lewy bodies?

Below is a summary of some of the most challenging symptoms that Mum experienced from very early on in her illness.

Fluctuating cognition

Fluctuating cognition is where someone will swing from a state of near-normal functioning to becoming drowsy and/or confused/ distracted. The severity, type and duration of symptoms can vary.

Mum suffered from fluctuating cognition from very early in her illness and could change from near-normal functioning to becoming very confused and agitated throughout the day.

Fluctuating cognition makes it very difficult to plan the level of care someone with dementia with Lewy bodies will need throughout the day, as they can swing from someone who is capable of fairly independent living, to someone who needs someone with them to keep them safe.


Visual hallucinations are where someone sees something or someone that is not there i.e. they don’t exist except in their mind. Dementia with Lewy bodies causes 2 out of 3 people to suffer from visual hallucinations. These hallucinations range from well-formed images of people (often children) or animals to more abstract visions such as shapes and colours.

Again Mum suffered from hallucination from very early in her illness right up until the end of her life. She would often ‘see’ people and would talk to them frequently. Before Mum was diagnosed with dementia with Lewy bodies (and I understood that it was a symptom of her disease) I found her hallucinations quite alarming and used to spend ages trying to convince her there was ‘no-one there’. I now realise this was the wrong thing to do, as her hallucinations were very real to her, and trying to convince her otherwise just led to distrust and paranoia.

Multitasking and problem solving

People with dementia with Lewy bodies lose the ability to carry out simple everyday tasks, as they struggle to access information that is stored in the brain. In addition, people with dementia with Lewy bodies tend to lose their thinking skills sooner than a person with Alzheimer’s, impacting early on their quality of life.

Mum struggled with many basic day to day tasks from very early in her illness. Many things like cooking and cleaning she stopped attempting but even making a cup of tea or coffee became very difficult very quickly resulting in embarrassment and a loss of confidence.

Problems with visual and spatial perception

People with dementia with Lewy bodies often visually misinterpret objects which seem to move or zoom towards/away from them or change shape. They also struggle with depth perception and directional sense.

Again this was a real problem for Mum from the start of her illness. She was forever bumping into things and really struggled to walk up and downstairs.

Falls in blood pressure and dizziness

Dementia with Lewy bodies affects the nervous system which can cause orthostatic hypotension (a drop in blood pressure) resulting in dizziness on standing.

Mum suffered from this from the start of her illness right through until the end of her life. Although dizziness on standing can be overlooked in a long line of more dramatic symptoms, it had quite a significant impact on Mum and she started having panic attacks as a result.

Motor (movement) problems

Up to two-thirds of people with dementia with Lewy bodies develop motor (movement) problems at some point.

The movement problems they experience are those of Parkinson’s disease and can be as severe as in Parkinson’s but usually milder. Tremor may also appear but is much less common and less severe than in Parkinson’s.

Mum suffered from stiff joints from the start of her illness, a problem that got progressively worse throughout her illness.

The above is a quick summary of the symptoms we found most challenging while caring for Mum. I have covered these symptoms and the strategies we put into place, in more detail in the book I wrote charting our journey.

2 thoughts on “Challenging symptoms of dementia with Lewy bodies

  1. My husband of 16 years my senior , has suffyvascular dementia. He’s taken several TIAs. Hospitalised for 10 days with high infection markers. My mother passed in March past.
    The agitation I have tried to control with diazepam.
    He wanders , I constantly loose him.
    Good it’s summer and bright days.
    Dread winter months.
    I searched frantically around our county roads yesterday only to find him in a car up our yard. I was about to call police!
    This is a terrible disease. My husband is one of four with it and his father and two brothers are already passed with it.
    Because it is hereditary it’s more rapid!
    I’m 58 I feel my world has fallen apart.
    I have a wonderful gp practice which helps.
    Nevertheless it’s like delivering a baby . You read all the books and think you are well armed. It’s not until you are in this position that you understand the truth if the disease. Vivienne

    1. I am so sorry to hear about your husband. Dementia is a truly awful disease and you are right, you don’t appreciate just how terrible it is until you have been affected. It must be particularly traumatic to have hereditary dementia in the family as it often has a younger onset and like you say is a more rapid decline. My thoughts are with you.

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