Lewy Body Dementia: Symptoms & Stages

by John Staughton (BASc, BFA) last updated -

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Considered the third most common dementia disorder behind Alzheimer’s and vascular dementia, Lewy body dementia is a serious condition that requires a great deal of care and understanding to be managed properly.

What is Lewy Body Dementia

Lewy body dementia is a form of dementia involving protein deposits in the brain and nervous system cells, impairing a person’s ability to think clearly, among other specific symptoms. There are many overlapping areas of the brain affected by both Alzheimer’s and Lewy body dementia, and it is believed that about 20% of patients with Alzheimer’s also suffer from Lewy body dementia. Memory and movement are severely affected in this condition, which can have a severe impact on motor control.

Symptoms

There are numerous symptoms of Lewy body dementia, some of which overlap with other forms of dementia, and do not necessarily manifest at the same time.

Cognitive Difficulties – Confusion and memory loss, as well as poor spatial and short-term memory skills, are common symptoms of this condition.

Sleep Patterns – One of the commonly linked disorders to Lewy body dementia is REM sleep behavior disorder, which causes you to act out your dreams, resulting in frequent waking up and poor sleep quality, as found in this study published in the American Academy of Neurology journal.

Depression – As is common with several dementia-related conditions, depression is a common symptom, as patients often feel that they are losing control of their own lives.

Hallucinations – Unlike Alzheimer’s and vascular dementia, hallucinations are commonly reported by people suffering from LBD, often in the early stages. These can be visual in nature, but may also be auditory or olfactory in nature.

Movement and Motor Control Issues – The inability to control the muscle systems, resulting in unstable walking, muscle tremors, shaking, and shuffling can all increase the risk of falls, so most people with any advanced form of this disease will use a wheelchair.

7 Stages of Lewy Body Dementia

It can be helpful for caretakers and family members to determine the level of severity of a Lewy body dementia diagnosis. There are seven stages of this dementia, based on the level of cognitive decline. The differences may seem difficult to calculate, but this is a helpful tool for many people.

Stage 1 (No Cognitive Decline) – At this stage, the condition is completely undetectable to loved ones, and even to the patient.

Stage 2 (Very Mild Cognitive Decline) – Extremely basic examples of cognitive declines, such as moments of forgetfulness, of people’s names and addresses. Difficult for any diagnosis to be made, or for medical advice to even be sought.

Stage 3 (Mild Cognitive Decline) – At this stage, loved ones may be noticing the change in memory and forgetfulness, as well as some lapses in focus and attention

Stage 4 (Moderate Cognitive Decline) – By this point, a diagnosis is possible and often made, and can be identified by using a somewhat simple cognitive test. Functioning within the world begins to be more of a challenge once someone has entered this stage of the disease.

Stage 5 (Moderately Severe Cognitive Decline) – Memory loss and the decline of physical ability are common in this stage, and simple daily tasks may require assistance, such as bathing oneself or preparing meals.

Stage 6 (Severe Cognitive Decline) – This stage could last for 2-3 years and represents a severe level of cognitive decline. Life is difficult to navigate without a caretaker or guardian, incontinence is common, and memory loss is often severe.

Stage 7 (Very Severe Cognitive Decline) – By this point, patients are unable to walk, and many cannot communicate. This is a stage of severe decline, usually lasting between 1 and 3 years, at which point the disease is often fatal.

lewy body dementia on a blue screen

Diagnosis

As mentioned above, diagnosis is often difficult before Stage 4 is reached, although some of the earlier stages may manifest in clear signals to ask a doctor about testing. Since there are so many symptoms that can fall under the umbrella of Lewy body dementia, doctors tend to rule out other diseases, rather than using a definitive test for this particular form of dementia.

Conditions like Parkinson’s, a stroke, bleeding in the brain or other cognitive disorder could be to blame for the symptoms, so these must be ruled out before a diagnosis is made. Tests on your reflexes, strength, balance, eye movement, walking, sense of touch and muscle tone can help determine if you demonstrate the physical characteristics. A blood test can eliminate any vitamin deficiencies as the culprit, while a brain scan can eliminate tumors or strokes as the cause. An assessment of cognitive abilities can be helpful, but not definitive, since they can be similar to the symptoms of Alzheimer’s disease.

Treatment

Treating this condition can be done in a few ways. A study in the Journal of Geriatric Psychiatry and Neurology argued that cholinesterase inhibitors, which are commonly used for Alzheimer’s patients, help stimulate chemical messengers in the brain and minimize cognitive symptoms, such as the inability to focus or the loss of short-term memory. Some of the other common treatments include drugs for Parkinson’s disease, as the symptoms and neural pathways being affected are quite similar. On a more general note, depending on how the condition is presenting, a doctor can recommend medications to treat the particular symptoms, rather than the underlying sickness.

Alternative treatment options include cognitive behavioral therapy, music therapy, massage therapy, pet therapy, and various home rituals or lifestyle changes that can make life easier as you cope with this condition.

Is Lewy Body Dementia Fatal?

While the disease isn’t necessarily fatal in itself, a higher likelihood for falls, infectious disease, and the inability to care for their own wellness leads to fatalities. The combination that this condition also has with depression and emotional stability can further threaten the long-term well being of those diagnosed with LBD. With proper therapy and support, some patients may live longer than 8 years, but it is undeniably a degenerative disease. Such a physical and mental weakening of the body can increase one’s susceptibility to many other fatal conditions.

Life Expectancy

In most cases, a diagnosis of Lewy body dementia carries a life expectancy of 5-8 years, much of which is characterized by a steady downward decline in both cognitive and physical abilities. Daily care, help with basic tasks and eventually full institutional support is required as the disease progresses. However, in some cases, the decline can happen much faster, or develop in more severe ways, resulting in a shorter prognosis.

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About the Author

John Staughton is a traveling writer, editor, and publisher who earned his English and Integrative Biology degrees from the University of Illinois in Champaign, Urbana (USA). He is the co-founder of a literary journal, Sheriff Nottingham, and calls the most beautiful places in the world his office. On a perpetual journey towards the idea of home, he uses words to educate, inspire, uplift and evolve.

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