Caring For Someone With Lewy Body Dementia
Caring for someone with LBD, or any form of dementia, is hugely challenging. Just as LBD can impact every aspect of a person, caring for someone with the disease can impact every aspect of your daily life. Youll likely face tests of stamina, problem solving, and resiliency. However, your caregiving journey can also be an intensely rewarding experience as long as you take care of yourself and get the support that you need.
What Causes Lewy Body Dementia
The causes of LBD are not yet well understood, but research is ongoing in this area. There are probably multiple factors involved, including genetic and environmental risk factors that combine with natural aging processes to make someone susceptible to LBD.
For more information, visit www.lbda.org.
Modified with permission from the Lewy Body Dementia Association
To learn more about motor symptoms related to Parkinsons, visit here.
To learn more about non-motor symptoms related to Parkinsons, visit here.
How Is Parkinsons Disease Dementia Diagnosed
No single test can diagnose Parkinsons disease dementia. Instead, doctors rely on a series or combination of tests and indicators.
Your neurologist will likely diagnose you with Parkinsons and then track your progression. They may monitor you for signs of dementia. As you get older, your risk for Parkinsons dementia increases.
Your doctor is more likely to conduct regular testing to monitor your cognitive functions, memory recall, and mental health.
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Whats The Difference Between Lewy Body Dementia Parkinsons Disease And Alzheimers Disease
Lewy body dementia is an umbrella term for two related clinical diagnoses: dementia with Lewy bodies and Parkinsons disease dementia. These disorders share the same underlying changes in the brain and very similar symptoms, but the symptoms appear in a different order depending;on where the Lewy bodies first form.
Dementia with Lewy bodies is a type of dementia that causes problems with memory and thinking abilities that are severe enough to interfere with everyday activities. It specifically affects a persons ability to plan and solve problems, called executive function, and their ability to understand visual information. Dementia always appears first in DLB. The motor symptoms of Parkinsons such as tremor, slowness, stiffness and walking/balance/gait problems usually become more evident as the disease progresses. Visual hallucinations, REM sleep behavior disorder, fluctuating levels of alertness and attention, mood changes and autonomic dysfunction are also characteristic of DLB.
Finally, Alzheimers is characterized by different abnormal clumps called amyloid plaques, and jumbled fiber bundles called tau tangles. These microscopic structural changes in the brain were discovered by Dr. Alois Alzheimer in 1906. These plaques and tangles, together with loss of connections between nerve cells, contribute to loss of coherence and memory, as well as a progressive impairment in conducting normal activities of daily living.
Parkinsons Disease With Dementia Versus Dementia With Lewy Bodies
Some patients with Parkinsons disease experience no or only subtle cognitive decline, and their primary limitation is their motor disorder. However, other patients with Parkinsons disease develop dementia as a consequence of the disease. When dementia develops after an established motor disorder, we call the disease Parkinsons disease with dementia . In contrast, when dementia develops prior to or at the same time as the motor disorder, we call the disease DLB. Although the initial sequence of symptoms differs in PDD and DLB, as the disorders progress, the symptoms and the underlying brain changes are much more similar than they are different. As such, many researchers and clinicians think of PDD and DLB as being on a continuum of a similar disease process rather than as two distinct entities.
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What Is Lewy Body Disease
Lewy body disease;is caused by the degeneration and death of nerve cells in the brain. The name comes from the presence of abnormal spherical structures, called Lewy bodies, which develop inside nerve cells. It is thought that these may contribute to the death of the brain cells. They are named after the doctor who first wrote about them. It is sometimes referred to as Diffuse Lewy body disease.
What Are The Treatments For Lewy Body Dementia
There is no cure for LBD, but treatments can help with the symptoms:
- Medicines may help with some of the cognitive, movement, and psychiatric symptoms
- Physical therapy can help with movement problems
- Occupational therapy may help find ways to more easily do everyday activities
- Speech therapy may help with swallowing difficulties and trouble speaking loudly and clearly
- Mental health counseling can help people with LBD and their families learn how to manage difficult emotions and behaviors. It can also help them plan for the future.
- Music or art therapy may reduce anxiety and improve well-being
Support groups can also be helpful for people with LBD and their caregivers. Support groups can give emotional and social support. They are also a place where people can share tips about how to deal with day-to-day challenges.
NIH: National Institute of Neurological Disorders and Stroke
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How Can We Support The Sleep/wake Cycle Of Dlb
For people with DLB who are confused about the day-night cycle, some daily strategies can be helpful. At night, starting a lights out routine that happens at the same hour every day, where all curtains are closed and lights are turned off, can help the person understand that it is sleep time. During the day, opening the curtains, allowing patients to spend as much time in the daylight as possible, avoiding naps, and organizing stimulating activities, can be helpful. Having lots of calendars and clocks in every room might also help a person with DLB be less confused about the time of day.
Coping With A Diagnosis
Being diagnosed with dementia can be an overwhelming experience. While there is no cure at present for LBD, or any medications aimed at specifically treating LBD, doctors are able to treat many of its symptoms. There are also a number of self-help strategies that can help improve symptoms.
If youve been diagnosed with LBD, its normal to feel many strong and painful emotions, including anger, fear, and uncertainty about the future.
Take time to adjust. As with any major life change, its important to give yourself time to adjust. Expect ups and downs as you do. You may feel that youve come to terms with your new situation for a while, and then suddenly feel overwhelmed by stress again.
Reach out for support.;Living with Lewy body dementia is not easy, but there is help for this journey. The more support you have from family and friends, the better youll be able to cope with symptoms.
Talk to your loved ones about your wishes. Its never easy to talk about how you want your healthcare handled when youre unable to make decisions for yourself. But its important to let your loved one know what is important to you. Thinking about your choices today can improve your quality of life in the future and ease the burden on your family.
Slowing the progression of symptoms
The same healthy lifestyle changes that are used to prevent dementia can also be useful in slowing the advancement of LBD symptoms.
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What Lifestyle Changes Can I Make To Ease Parkinsons Symptoms
Exercise helps improve muscle strength, balance, coordination, flexibility, and tremor. It is also strongly believed to improve memory, thinking and reduce the risk of falls and decrease anxiety and depression. One study in persons with Parkinsons disease showed that 2.5 hours of exercise per week resulted in improved ability to move and a slower decline in quality of life compared to those who didnt exercise or didnt start until later in the course of their disease. Some exercises to consider include strengthening or resistance training, stretching exercises or aerobics . All types of exercise are helpful.
Eat a healthy, balanced diet: This is not only good for your general health but can ease some of the non-movement related symptoms of Parkinsons, such as constipation. Eating foods high in fiber in particular can relieve constipation. The Mediterranean diet is one example of a healthy diet.
Preventing falls and maintaining balance: Falls are a frequent complication of Parkinsons. While you can do many things to reduce your risk of falling, the two most important are: 1) to work with your doctor to ensure that your treatments whether medicines or deep brain stimulation are optimal; and 2) to consult with a physical therapist who can assess your walking and balance. The physical therapist is the expert when it comes to recommending assistive devices or exercise to improve safety and preventing falls.
Treatments For Parkinsons Disease Dementia And Dementia With Lewy Bodies
Treatments for DLB are similar to PDD and are aimed at symptom control. The motor symptoms of slowness, stiffness and walking difficulties can be treated with Levodopa. However, Levodopa can cause or exacerbate hallucinations, making it difficult to use it as a treatment for patients who have or are at risk of having hallucinations. Sometimes, clinicians will need to treat the hallucinations more aggressively in order for a patient to tolerate Levodopa given to help the motor symptoms. On the flipside, anti-psychotic medications to control hallucinations can worsen motor symptoms, so treating all the symptoms of LBD simultaneously can be a tricky balancing act.
Outlook For Dementia With Lewy Bodies
How quickly dementia with Lewy bodies gets worse varies from person to person.
Home-based help will usually be needed, and some people will eventually need care in a nursing home.
The average survival time after diagnosis is similar to that of Alzheimers disease around 6 to 12 years. But this is highly variable and some people live much longer than this.
If you or a loved one has been diagnosed with dementia, remember that youre not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.
Stages And Progression Of Lewy Body Dementia
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology.
If you or someone you know has recently been diagnosed with Lewy body dementia, you might be wondering what to expect as the disease progresses. Is there a fairly typical progression like Alzheimer’s disease where it begins in early stages that are fairly uniform, then moves to middle stages;and then to late stages? In Lewy body dementia, the answer is a bit more complicated.
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Is Lewy Body Dementia An Inherited Condition
One of the more recent discoveries toward identifying a cause of Lewy body dementia is the finding of an increasing number of gene mutations. Two genetic risk factors recently discovered are variants in the APOE and GBA genes. APOE is already known to increase the risk of developing Alzheimers disease. There is growing evidence that it also increases the risk for dementia with lewy bodies. Similarly, the GBA gene increases the risk for both Parkinsons disease and dementia with lewy bodies. Despite these findings, genetic changes as a cause of LBD are still considered rare by scientists. Most cases of Lewy body dementia are not thought to be inherited.
Genetic testing for routine screening for LBD is not currently recommended. Discuss the pros and cons of testing with your healthcare providers if you have a family history of multiple members with Parkinsons disease and/or dementia with lewy bodies.
What Are The Symptoms Of Lewy Body Dementia
Lewy body dementia symptoms may resemble those of other neurological disorders, like Alzheimers disease and Parkinsons disease. LBD affects each person differently, and symptoms vary in severity.
Common symptoms of LBD include:
- Visual hallucinations, or seeing things that are not there.
- Reduced alertness, attention and ability to concentrate.
- Parkinsonism, a movement disorder with symptoms including slowness, tremors, stiffness, balance problems, soft voice, difficulty swallowing, reduced facial expression and shuffling walk.
- Visuospatial difficulties, including decreased depth perception, trouble recognizing familiar objects and impaired hand-eye coordination.
- Delusions, or beliefs with no basis in reality.
- Changes in behavior and mood including anxiety, agitation, aggression, apathy, depression and paranoia.
- Changes in sleep patterns.
Other symptoms include:
- Acting out while sleeping. Your loved one may act out their dreams during a phase of sleep cycle called rapid eye movement . Sometimes this happens years before their LBD diagnosis. Often called REM sleep behavior disorder , this condition is described as frequent movements, such as flailing or punching, with yelling or speaking while sleeping. People living with RBD often have difficulty separating dreams from reality when they wake up.
- Changes in normal body functions. Body temperature may waver, blood pressure may fluctuate and loss of bowel and bladder control.
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What Is Dementia With Lewy Bodies And Parkinsons
Both conditions relate to decline in cognitive thinking and reasoning, loss of brain cells and abnormal alpha-synuclein protein clusters termed as Lewy bodies.
Both disorders have very similar;symptoms, but the;symptoms;usually happen;in a;different order dependant on where the;Lewy bodies;first form.;
Major similarities between Parkinsons and Lewy Body Dementia include;
- Both disorders affect approximately one million people in the United States
- They both an impact to the brain nerve cells
- There is no cure for both of these conditions
- Symptoms that impact the body include stiffness, weakness and slowness in movements
- Symptoms that affect brain include: memory loss, attention span and impaired;executive functioning
The protein alpha-synuclein unusually builds up in the brain in aggregates, or clumps, called Lewy bodies. The location of those clumps makes a difference.;
Also, people who have Lewy bodies tend to exhibit greater variation in brain function ability than those with;PD dementia.
Can Imaging Tests Diagnose Lewy Body Dementia
Imaging tests, such as computed tomography or magnetic resonance imaging , are done to rule out other causes of dementia such as brain tumors, brain bleeds, stroke, hydrocephalus or other structural causes. Imaging studies for Lewy body dementia are usually normal. The only way to make an absolute diagnosis of LBD is by examining the brain at autopsy.
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How Exactly Is Lewy Body Dementia Related To Alzheimers Disease And Parkinsons Disease
Lewy body dementia is a broad, general term for dementia in which lewy bodies are present in the brain. Dementia with lewy bodies and Parkinsons disease dementia are two related clinical disorders that make up the general broader category of Lewy body dementia. Sometimes LBD is first diagnosed as Parkinsons disease or Alzheimers disease based on its symptoms.
- Parkinsons disease dementia : You might be diagnosed with Parkinsons disease if you start out with a movement disorder typical to Parkinsons but then have your diagnosis changed to PDD when dementia symptoms develop.
- Alzheimers disease : You might start out with memory or cognitive disorder that leads to a diagnosis of AD. Over time, other distinctive symptoms begin to appear and your diagnosis is then changed to dementia with lewy bodies. Distinctive symptoms of LBD include the changes in attention, alertness and cognitive ability; changes in walking and movement; visual hallucinations; REM sleep behavior disorder and severe sensitivity to some antipsychotics used to treat hallucinations.
Wait So What Is Parkinsonism
Parkinsonism refers to the motor symptoms that are typically associated with PD, such as tremors, stiffness, and walking/balance problems. Both PD and LBD are forms of Parkinsonism, meaning that PD patients and LBD patients may experience these motor symptoms.2 Because the Parkinsonism motor symptoms of PD and LBD can be very similar, it can be difficult to differentiate between the two conditions.
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Symptoms Of Dementia With Lewy Bodies
People with dementia with Lewy bodies may have:
- hallucinations seeing, hearing or smelling things that are not there
- problems with understanding, thinking, memory and judgement this is similar to Alzheimer’s disease, although memory may be less affected in people with dementia with Lewy bodies
- confusion or sleepiness this can change over minutes or hours
- slow movement, stiff limbs and tremors
- disturbed sleep, often with violent movements and shouting out
- fainting spells, unsteadiness and falls
These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves.
What Are The Types Of Lewy Body Dementia
There are two types of LBD: dementia with Lewy bodies and Parkinson’s disease dementia.
Both types cause the same changes in the brain. And, over time, they can cause similar symptoms. The main difference is in when the cognitive and movement symptoms start.
Dementia with Lewy bodies causes problems with thinking ability that seem similar to Alzheimer’s disease. Later, it also causes other symptoms, such as movement symptoms, visual hallucinations, and certain sleep disorders. It also causes more trouble with mental activities than with memory.
Parkinson’s disease dementia starts as a movement disorder. It first causes the symptoms of Parkinson’s disease: slowed movement, muscle stiffness, tremor, and a shuffling walk. Later on, it causes dementia.
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Understanding Lewy Body Dementias
Lewy body dementias affect an estimated 1.4 million individuals and their families in the United States. At the Lewy Body Dementia Association , we understand that though many families are affected by this disease, few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists. There are important facts about Lewy body dementias that you should know if you, a loved one, or a patient you are treating may have LBD.