Managing Sleep Disorders In Lewy Body Dementia
Sleep problems may increase confusion and behavioral problems in people with LBD and add to a caregiver’s burden. A physician can order a sleep study to identify any underlying sleep disorders such as sleep apnea, restless leg syndrome, and REM sleep behavior disorder.
REM sleep behavior disorder, a common LBD symptom, involves acting out one’s dreams, leading to lost sleep and even injuries to individuals and their sleep partners. Clonazepam, a drug used to control seizures and relieve panic attacks, is often effective for the disorder at very low dosages. However, it can have side effects such as dizziness, unsteadiness, and problems with thinking. Melatonin, a naturally occurring hormone used to treat insomnia, may also offer some benefit when taken alone or with clonazepam.
Excessive daytime sleepiness is also common in LBD. If it is severe, a sleep specialist may prescribe a stimulant to help the person stay awake during the day.
Some people with LBD have difficulty falling asleep. If trouble sleeping at night persists, a physician may recommend a prescription medication. It is important to note that treating insomnia and other sleep problems in people with LBD has not been extensively studied, and that treatments may worsen daytime sleepiness and should be used with caution. Sleep problems can also be addressed by avoiding lengthy naps, increasing daytime exercise, and avoiding caffeine, alcohol, and chocolate late in the day.
Five Approximate Phases Of Lewy Body Dementia
This post is about five phases of Lewy Body Dementia, according to a group of caregiver spouses.
Some members of the LBD_caringspouses Yahoo!Groups list have been working on the LBD Approximate Phases for a year now. I just received from Sue Lewis this final version of the Phases. This caregivers view of the five phases of LBD is a worthwhile document, especially for those new to the world of LBD. Theyve been working on this list on and off for so long that, at this point, they are not inviting your suggestions on how to modify the document. But they welcome any general comments ! You can send comments to me and Ill pass them on .
Robin
LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSESAugust 2007Facilitated by Sue Lewis of West Virginia, edited by June Christensen, Kansas
GLOSSARY OF ACRONYMS
ADL: Activities of Daily Living dressing/bathing/ feeding oneselfBP: Blood PressureDME: Durable Medical Equipmentwheel chair, shower chairDPOA: Durable Power of AttorneyLBD: Lewy Body Dementia
- May accuse spouse of infidelity, aggression
- Able to engage independently in leisure activities
- Handwriting is affected
- Impaired ability to handle financial responsibilities · Still may be able to work but driving skills often compromised
PHASE II POSSIBILITIES
- Ambulates/transfers without assistance but increased risk for falls/requires walker
- Leaning to one side
- Possible fainting
Stage : Inability To Speak Walk Or Do Basic Functions
The final stage of dementia is where there is very severe cognitive decline to the point of requiring 24-hour care. Your loved one may be non-verbal at this stage and not be able to do much on their own. Hospice care can be an option at this stage, but you may still be able to visit with them and communicate with them, making them comfortable as much as possible. Symptoms in this stage include:
- Inability to eat or speak
- Inability to walk or get around without assistance
- Loss of bladder and bowel control
- May not recognize family members
- Severe disorientation
- Loss of muscle control
Late-stage dementia is difficult for everyone and can mean someone is in the final stages of life. Luckily there are endless sources for patients, loved ones, and caregivers to tackle this difficult time.
Also Check: How To Become An Alzheimer’s Researcher
Coping With Lewy Body Dementia
Coping with Lewy body dementia involves much more than your treatment plan. Its also essential to have access to social support and a safe home.
In the early stages of this condition, symptoms are typically milder, and people with LBD can function. However, as the disease progresses, there will be a severe decline in cognitive and motor abilities, and assisted care will be necessary.
Taking care of your physical healthy by exercising regularly and eating nutritious meals, is also important. Symptoms of anxiety and depression could develop as a result of this condition. Speaking to a therapist who has experience working with people who have dementia, will help.
Behavioral changes are to be expected with LBD. Keeping a diary to track your triggers and what times of the day you experience changes in your behavior, will help you understand your condition better.
How Does Lewy Body Disease Progress
Lewy body disease differs from Alzheimer’s disease in that the progression of the disease is usually more rapid. However, like Alzheimer’s disease it is a degenerative condition, eventually leading to complete dependence. Death is usually a result of another illness, such as pneumonia or an infection. The average lifespan after the onset of symptoms is about seven years.
Recommended Reading: Does Smelling Farts Help Prevent Dementia
Therapy Following Your Diagnosis
Receiving a dementia diagnosis may feel disheartening. You might feel sad, angry, scared, or confused. Speaking with a therapist who works with clients who have received life-threatening medical diagnoses may be helpful. A therapist can help you come to terms with your diagnosis and address any fears you may have.
Stage Six: Severe Cognitive Decline
Individuals in stage six need a high level of support to live comfortably. Memory loss tends to be significant, and many in stage six dementia are only able to recall memories of early life. Incontinence is common in this stage, and many patients also begin to lose their ability to speak. A change in personality may occur during this time period, which lasts an average of 2.5 years.
You May Like: Why Does Lewy Body Dementia Cause Death
Get The Word Of Drug Information
Knowing what to expect with Lewy body dementia can help However, one of the things to expect is really unexpected in Lewy body dementia. The unpredictability of Lewy body dementia is one of its characteristics, and knowing that it is normal can reassure both the person living with the disease and their family members and caregivers.
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.
Recommended Reading: Does My Mother Have Alzheimer’s
How Lewy Body Dementia Progresses
Lewy body dementia and Alzheimer’s disease are both forms of dementia. Lewy body dementia, however, progresses somewhat differently from Alzheimer’s disease. Notably, the symptomsespecially memory losscan fluctuate greatly with LBD. Alzheimer’s tends to worsen more steadily.
One of the hallmarks of Lewy body dementia is the fluctuation of cognitive functioning. Often, a person may function fairly well one day and be totally disengaged with a profound loss of memory the next.
Understanding this variation in cognition can be helpful for caregivers. Without this knowledge, it may seem like the person with Lewy body dementia is “forgetting” on purpose.
This fluctuation can also make it feel like the person is moving back and forth from one stage to another. In reality, the variation in functioning is a normal feature within each stage of the disease.
Hallucinations Or Delusions Of Reality
Unlike Alzheimers disease, individuals in the early stages of Lewy Body Dementia may exhibit cognitive changes such as hallucinations or distortions of reality. In general, hallucinations caused by LBD are vivid and usually visual, rather than auditory. LBD differs from other forms of dementia in that most early-stage cases do not involve memory loss.
Read Also: Is Lewy Body Dementia Present In All Parkinson’s Residents
The Basics Of Lewy Body Dementia
In Lewy body dementia, Lewy bodies develop in your brain. These small protein deposits are thought to interfere with how nerve cells in your brain communicate.
People with Lewy body dementia may experience cognitive problems, such as difficulties with planning, reasoning and judgment. Lewy body dementia may also cause hallucinations. Patients with Lewy body dementia may sleep during the day, suffer from insomnia, or have vivid dreams and act out in their sleep. However, they dont generally experience memory loss until far along in their disease progression.
Physically, Lewy body dementia may cause stiffness or palsy similar to those experienced in Parkinsons disease.
Approximate Lewy Body Dementia Phases Symptoms And Considerations
Lewy Body Dementia Stage 1 Possibilities
Most caregivers are concerned/worried that something is not right. Symptoms from later stages can also appear this early on the continuum. At the end of this phase, cognitive impairment is difficult to deny.
Symptoms and subtle changes may include:
- Increased daytime sleep: two-plus hours
- Vision affected
- Hearing affected
- Speech difficulty
- Physical coordination diminished
- Posture altered
- Chronic runny nose
- Ability to learn new tasks affected
- Short term memory impacted
- Thinking/learning/ problem solving difficulties suggest dementia
- Mood: Depressed/Anxiety
- Able to engage independently in leisure activities
- Handwriting is affected
- Impairments with financial responsibilities
- May still be able to maintain employment
- May be able to hide symptoms
- Socialization still possible
- May accuse spouse of infidelity
Lewy Body Dementia Stage 2 Possibilities
Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
Symptoms are usually clearer by this point:
Increased difficulty with:
Lewy Body Dementia Stage 3 Possibilities
Lewy Body Dementia Stage 4 Possibilities
Lewy Body Dementia Stage 5 Possibilities
- Sue Lewis of West Virginia, USA
Also Check: Are Alzheimer And Dementia Hereditary
Behaviors Seen In Parkinsons Disease Dementia
As dementia progresses, managing disorientation, confusion, agitation, and impulsivity can be a key component of care.
Some patients experience hallucinations or delusions as a complication of Parkinsons disease. These may be frightening and debilitating. Approximately 50 percent of those with the disease may experience them.
The best thing to do when giving care to someone experiencing hallucinations or delusions from Parkinsons disease dementia is to keep them calm and reduce their stress.
Take note of their symptoms and what they were doing before they exhibited signs of hallucinating and then let their doctor know.
This element of the disease can be particularly challenging for caregivers. Patients may become unable to care for themselves or be left alone.
Some ways to make caregiving easier include:
- sticking to a normal routine whenever possible
- being extra comforting after any medical procedures
- limiting distractions
- using curtains, nightlights, and clocks to help stick to a regular sleep schedule
- remembering that the behaviors are a factor of the disease and not the person
Increased Research Funding Paves The Way For Improved Lbd Care
The National Institutes of Health and the pharmaceutical industry have funneled more resources into recognizing, diagnosing and treating individuals with LBD.
Many of us are involved in these research studies and clinical trials. Were hopeful that well increase our understanding of the biology of the disease and how to treat individuals, says Dr. Leverenz. Were just starting to see data coming out of those studies, and thats very promising.
Also Check: What Does A Brain Look Like With Alzheimer’s
Lbd Story: Facing Tough Choices At The End Of Life
When a loved one is nearing the end of life from a disease like Lewy body dementia, emotions run strong, and confusion can overtake the decision process. I want to share my own personal experience as an LBD caregiver in the hopes it will help others.
We engaged hospice services for my father before he was in the dying process. And Im so glad we did. He had taken to keeping his eyes closed much of the time he was awake. And slowly he lost the strength to bear any weight on his legs. In came hospice staff and all of their wonderful resources.
I was surprised when he became more alert and responsive under their care. Looking back, now I realize it makes perfect sense. They used a proactive strategy to manage the normal aches and pains of getting older and being less active. He had clearly been living with pain but was unable to express it. How long had that being going on? After a month or two, they suggested further improvement might negate the need for hospice care.
But then influenza swept through the memory care residence. Despite aggressive cleaning efforts by the staff, the flu spread. It wasnt long before Dad developed a high fever and couldnt be awakened.
Coping With Cognitive Changes
Some medications used to treat Alzheimer’s disease also may be used to treat the cognitive symptoms of LBD. These drugs, called cholinesterase inhibitors, act on a chemical in the brain that is important for memory and thinking. They may also improve hallucinations, apathy, and delusions. The U.S. Food and Drug Administration has approved one Alzheimer’s drug, rivastigmine, to treat cognitive symptoms in Parkinson’s disease dementia. Several other drugs are being tested as possible treatments for LBD symptoms or to disrupt the underlying disease process.
You May Like: Symptoms Alzheimer’s Early Onset
Lewy Body Dementia Is The Second Most Common Form Of Dementia
There are crucial differences between Lewy body dementia and Alzheimers disease the most common form of dementia.
For example, people with Lewy body dementia often experience unpredictable changes in cognition throughout the day. People with Alzheimers, on the other hand, tend to have more trouble in the late afternoon and evening a symptom known as sundowning.
Another example: People with Lewy body dementia tend to have more visual hallucinations and movement issues. The hallmarks of Alzheimers, on the other hand, include memory loss and trouble performing familiar tasks.
- Problems in thinking, such as inattention, lack of judgment, loss of insight, and decline in problem-solving and organizational skill
- Fluctuations in attention, alertness, and wakefulness
- Problems with movement, such as tremors, stiffness, slowness, and difficulty walking
- Recurrent, visual hallucinations
- Sleep disorders, such as vivid dreaming and excessive movement while asleep
- Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia
- Changes in blood pressure control, temperature regulation, and bladder and bowel function
Diagnosing And Treating Lewy Body Dementia
Since some symptoms associated with LBD can occur with other conditions, its vital to seek care with a medical specialist who can provide a thorough evaluation and proper diagnosis . Neurologists will focus on managing problem-causing symptoms since there is no U.S. Food and Drug Administration -approved medication that treats the Lewy body changes in the brain itself.
But medical specialists can often use medications and otherinterventions to:
- Improve cognition .
- Reduce hallucinations.
- Minimize motor symptoms.
While we cant cure LBD, we can provide effective symptom management that improves quality of life, says Dr. Leverenz. Finding a provider that has experience with Alzheimers and LBD ensures you or your loved one will receive specialized care. You wont be offered medications that arent effective, or worse, cause unintended side effects.
Recommended Reading: Drug Treatment For Alzheimer’s Disease
How Is Lbd Different From Parkinsons Or Alzheimers
These diseases are similar in a lot of ways. But there are some key differences in the symptoms that affect people with LBD and when those symptoms happen.
LBD may not cause short-term memory loss like Alzheimerâs. People with both conditions have trouble with thinking, alertness, and paying attention. But in LBD, those problems come and go. The disease can also cause hallucinations, often in the first few years someone has LBD. People with Alzheimerâs usually donât have hallucinations until the later stages.
People with LBD also often act out their dreams and make violent movements when theyâre asleep. Itâs called REM sleep behavior disorder. Sometimes, itâs the first sign that someone has LBD.
LBD and Parkinsonâs disease both cause movement problems, like stiff muscles and tremors. But most people with Parkinsonâs donât have problems with their thinking and memory until the very later stages of their disease. Sometimes, they donât have it at all. In the type of LBD known as Parkinsonâs disease with dementia, these problems begin much sooner.
People with LBD also need different drugs for their condition than the ones that treat Parkinsonâs or Alzheimerâs.
Lewy Body Dementia Is An Umbrella Term
There are two diagnoses of Lewy body dementia dementia with Lewy bodies and Parkinsons disease dementia.
Lewy bodies are made of a protein found in the brain that plays an important role in communication between brain cells. When these proteins clump together inside neurons, they damage cells and cause them to slowly die.
Your loved ones symptoms and the type of LBD they have will depend on where in the brain the proteins cause damage.
For example, if your loved ones symptoms first started out as problems with movement and then progressed to impaired thinking or fluctuations in cognition, then they will most likely be diagnosed with Parkinsons disease dementia.
On the other hand, if your loved one first had a loss of function in information processing, perception, thought, and language or hallucinations, and behavioral problems, then they will most likely be diagnosed with dementia with Lewy bodies.
Regardless of the initial symptoms, all types of Lewy body dementia will develop very similar symptoms that will progress and worsen over time.
Recommended Reading: How Can Stem Cells Cure Alzheimer Disease
Stages Of Dementia: When To Transition To Memory Care
Dementia is not something that just appears one day. It can take weeks, months, or years to progress into a form of dementia that requires memory care. Dementia is also misconstrued as a singular disease, but its actually a grouping of symptoms that can drastically affect brain function. Everything from making decisions to performing daily tasks becomes difficult as dementia advances, and most commonly, memory loss is a tell-tale symptom.
Getting ahead of dementia symptoms can ensure easy transitions from memory care to hospice care and everything in between. So knowing the various stages of dementia and how to respond can help alleviate a lot of stress and anxiety from both the patient and the caregivers.
The seven stages are:
Today well identify each stage of dementia with the signs, symptoms, and what to do next to plan aheadplus when its time to seek out professional memory care.