Learning that a loved one has dementia is a confusing and frightening time for you and your family. It's normal to feel upset and not know where to turn. Did you know that some form of dementia affects more than 55 million people worldwide?
The tragic passing of Robin Williams in 2014, while it was suicidal was actually later discovered that he had Lewy Body Dementia. This brought attention to the importance of mental health disorders. This is true especially for those accompanying the neurodegenerative effects of Parkinsons-like symptoms.
Caring for an aging parent or loved one is always a difficult and exhausting undertaking. Understanding what to expect and how to deal with it is an important part of taking care of your own needs as well.
Diffuse Lewy body disease, dementia due to Lewy body disease
Dementia, abnormal behavior during REM sleep, fluctuations in alertness, visual hallucinations, parkinsonism
After the age of 50, median 76
Based on symptoms and biomarkers
Alzheimer's, Parkinson's disease dementia, certain mental illnesses, vascular dementia
Acetylcholinesterase inhibitors such as donepezil and rivastigmine; melatonin
Average survival 8 years from diagnosis
About 0.4% of persons older than 65
Lewy Body Dementia Diagnosis (Symptoms)
Lewy Body Dementia diagnosis is difficult, especially in the early stages. Many of the symptoms are shared with other conditions. These includes:
General practitioners will often diagnose one of these conditions, without looking further. You are your best advocate and should be doing research to connect the dots. Insist on a referral to a neurologist or specialist.
What Are Lewy Bodies?
Lewy Bodies are composed of protein particles that aggregate in different parts of the brain. This is linked to how the brain processes the protein alpha-synuclein. The brain of a person affected with Lewy Body Disease may have hallmark changes such as plaques and tangles of abnormal protein deposits.
What Causes Lewy Body Dementia?
The exact cause of LBD has not yet been determined, however, scientists have discovered that the accumulation of Lewy Bodies occurs in association with the deterioration of certain neurotransmitters.
Neurotransmitters are messengers between brain cells. Two neurotransmitters directly linked to LBD are the acetylcholine and dopamine receptors. They are responsible for memory and learning and behaviour, cognition and sleep.
Lewy Body Posture
Along with other signs and symptoms of LBD, one of the most recognizable is what is termed the Lewy Body Dementia posture.
An affected individual will maintain a stooped position, tend to shuffle and experience marked changes in gait. Some people will also lean to one side when standing, walking or sitting.
Lewy Body Dementia and Alzheimer's Disease
There are many similarities between LBD and Alzheimer's Disease. Both manifest changes in cognitive function and memory as well as movement and balance issues.
The key differences in Lewy Body Dementia symptoms and those of Alzheimer's Disease are as follows:
Memory loss is evident earlier on in Alzheimer's
Movement disorders are manifest earlier in Lewy Body Dementia
Delusions and hallucinations are more frequent in early-stage LBD
Sleep disorders such as disturbed REM sleep are more common in early-stage Lewy Body disease
Early-stage LBD sufferers are more likely to show autonomic nervous system disruptions
It is evident that cognitive decay occurs earlier in Alzheimer's whereas physiological and psychiatric deterioration occurs earlier in sufferers with Lewy Body Dementia. Both conditions require round-the-clock monitoring and care. These present challenges for most caregivers unless they have help.
7 Stages of Lewy Body Dementia
It is important to understand that no disease follows a set progression. We have attempted to outline some of the key stages of Lewy Body Dementia, though you should be aware that there will be variations.
Lewy Body Dementia symptoms will begin usually at age 50 or older. Men have a higher chance of developing LBD than women. You also have a higher chance of developing the disease if you have a family history of Parkinson's disease or LBD.
Up to 80% of early-stage sufferers of Lewy Body Dementia will often manifest visual hallucinations. They will report seeing people, animals or insects and can even provide details of their visual delusions.
Some people will even experience sound (auditory), smell (olfactory), or touch (tactile) hallucinations.
Many will experience depression and apathy or lack of motivation. Impairment of logical reasoning and problem-solving will also manifest as an early-stage deficit.
Sleep disorders in people with LBD often go undiagnosed. They will often experience daytime sleepiness along with insomnia. REM sleep disorder is also common in the early stages of the disease.
A person with Lewy Body disease will manifest a slowing of movement, possibly due to muscle rigidity or stiffness. They will often have a shuffling walk in a stooped posture. It is at this stage that many people will show a tendency to lean to one side.
Facial expression may also become more rigid and unnatural and the person with LBD may speak in a monotone.
In the early stages of Lewy Body Dementia, the sufferer will begin to manifest tremors of the hands and head. They will often show a lack of coordination and frequent falling due to loss of balance.
At this stage, if the doctor is not aware of the earlier symptoms mentioned above, he may give a diagnosis of Parkinson's Disease. You need to inform the doctor of these for him to make a correct diagnosis.
Some sufferers will also begin to show occasional episodes of incontinence or constipation. They may also begin to suffer from muscle contractions.
During the middle stages of Lewy Body Dementia, speech difficulties become more pronounced. Many people will have difficulty finding words (aphasia) or pronouncing words.
The sufferer may also have difficulty swallowing and speak in a weak voice. Some may also resort to whispering.
Cognition and Memory Failure
As Lewy Body Dementia progresses, people will begin to show decreased cognition that will interfere with daily activities. They will need assistance with most activities for daily living.
Many people will be unreasonable and may demonstrate severe mood fluctuations. This can manifest as severe anxiety or even anger.
At this stage, it may be necessary to consider a long-term care home that specializes in dementia. You can no longer leave your loved one unsupervised due to their inability to take medication unsupervised and their progressive confusion. They may no longer be able to tell time or recognize familiar people and places.
Muscle and Nerve Damage
By now, the person with Lewy Body Dementia will be demonstrating regular incontinence of the bladder and bowels. They will not be able to get around on their own and will require constant monitoring for falls.
Autonomic dysfunctions such as blood pressure fluctuations and heart rate changes and even body temperature regulation will become severe at this stage. These will have to be continuously monitored and stabilized with the help of appropriate medications.
At this stage, people with Lewy Body Dementia will no longer be able to control their saliva and will tend to drool. They may also experience excessive sweating.
Late-Stage Lewy Body Disease
Full dependence for all activities for daily living occurs in the final stages of Lewy Body Dementia. Full cognitive decline is now typical and they will no longer be able to communicate or recognize loved ones.
Sufferers are now at high risk for pneumonia, skin breakdown, urinary tract infections and other diseases. They will be highly sensitive to touch and have an impaired sense of smell.
Lewy Body Dementia Treatment
Early diagnosis and appropriate Lewy Body Dementia treatment have proven to improve the quality of life of a person with Lewy Body Dementia. A caregiver also benefits from proper palliative care of their loved one. This care can involve medication, counselling and physical therapy.
There is currently no method of prevention or cure for Lewy Body Dementia.
Managing Cognitive Changes
Some medications used to treat Alzheimer's Disease can be used to treat LBD. These are called cholinesterase inhibitors. They act on the chemicals in the brain that affect memory and thinking.
Managing Motor Symptoms
Since the motor functions of a person with LBD are affected in the same way as those with Parkinson's Disease, occasionally carbidopa-levodopa is used. This medication may increase psychotic symptoms, so it is not always advised. Doctors will often opt for physical therapy and exercise.
Managing Sleep Disorders
Lack of sleep can be the cause of confusion and behavioural problems in people, not just those with LBD. Proper management of sleep for a person with Lewy Body Disease can alleviate some psychiatric problems.
Clonazepam is frequently prescribed in low dosages to help a person with LBD get to sleep. Combined with melatonin, this is often very effective. Doctors will also recommend avoiding caffeine, alcohol and chocolate and increasing daytime exercise.
If the behaviour of the person with Lewy Body Disorder can be managed without medication, doctors will avoid prescribing any. Most antipsychotic medications have side effects. These include increased sleepiness, confusion and physiological deterioration.
Preparing to Care for Loved Ones
Caring for a person with Lewy Body Dementia is never easy. Watching the deterioration of your loved one as they progress through the stages of the disease takes a lot out of the caregivers.
There are many community resources that will help you deal with the physical, emotional and psychological challenges you may have to face. You do not have to deal with it alone.
Being prepared for these difficult days and having the financial resources available for the home care or long-term care requirement of your loved one will also help.