I believe that the earlier stage of dementia with Lewy bodies (DLB), has a greater impact than other types of dementia, as the disease presents a number of unique and challenging symptoms from very early in the illness.
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.
Below is a summary of some of the most challenging symptoms that Mum experienced from very early on in her illness.
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 affect 2 out of 3 people with dementia with Lewy bodies. 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. 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 down stairs.
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.