How Family Members And Caregivers Can Support Their Loved Ones With Lewy Body Dementia
Because LBD is hard to diagnose and similar to other types of dementia, it can be hard for caregivers to get enough information to help their loved ones with the disease. This is why its important to find a medical professional who is experienced with LBD specifically.
For example, people with LBD are especially sensitive to anti-anxiety medications. Its important for caregivers to know this because anti-anxiety medications can worsen anxiety in people living with LBD.
Managing hallucinations and delusions is often said to be the hardest part of caring for someone with LBD. Learning a Positive Approach to Care, taught by Teepa Snow, can be especially helpful for caregivers. At The Kensington Sierra Madre, our team is trained in this specialized approach to care. This approach helps caregivers communicate with their loved ones who may be difficult at times, and allows our team to provide care that is catered to individual needs.
Because LBD typically lasts 5-8 years, many caregivers often look to find an assisted living community that can provide quality care and comfort for their loved one.
Families should do their research to ensure the assisted living community can allow their loved ones to age in place, offering a continuum of healthcare that ranges from daily assistance from nurses to hospice care.
Lewy Bodies: More Than Lbd
LBD is characterized by the presence of Lewy bodies in the nerve cells of the brain, meaning that LBD patients have Lewy bodies in the brain.2 However, Lewy bodies are also common with other conditions, such as Alzheimer’s and Parkinsons disease. In fact, most people with PD also have Lewy bodies in their brain. However, even if they have Lewy bodies, not all Parkinsons patients will also develop LBD.2
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.
Cognitive Symptoms Of Lewy Body Dementia
LBD causes changes in thinking abilities. These changes may include:
- Visual hallucinations, or seeing things that are not present. Visual hallucinations occur in up to 80 percent of people with LBD, often early on. Nonvisual hallucinations, such as hearing or smelling things that are not present, are less common than visual ones but may also occur.
- Unpredictable changes in concentration, attention, alertness, and wakefulness from day to day and sometimes throughout the day. Ideas may be disorganized, unclear, or illogical. These kinds of changes are common in LBD and may help distinguish it from Alzheimer’s disease.
- Severe loss of thinking abilities that interfere with daily activities. Unlike in Alzheimer’s dementia, memory problems may not be evident at first but often arise as LBD progresses. Other changes related to thinking may include poor judgment, confusion about time and place, and difficulty with language and numbers.
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.
Differences Between Pdd And Dlb
So, how are PDD and DLB different from each other? That depends on whom you ask. Some clinicians feel that these two conditions are simply different versions of the same disorder. In fact, some professionals use the terms interchangeably. Yet, according to currently agreed-upon diagnostic guidelines, there are some differences.
Building A Lewy Body Dementia Care Team
After receiving a diagnosis, a person with LBD may benefit from seeing a neurologist who specializes in dementia and/or movement disorders. Your primary doctor can work with other professionals to follow your treatment plan. Depending on an individual’s particular symptoms, physical, speech, and occupational therapists, as well as mental health and palliative care specialists, can be helpful.
Support groups are another valuable resource for people with LBD and their caregivers. Sharing experiences and tips with others in the same situation can help people find practical solutions to day-to-day challenges and get emotional and social support.
Robin Williams Would Have Been 70 This Year Here’s What We Know About Lewy Body Dementia Suicide And Parkinson’s
On July 21, actor and comedic genius Robin Williams would have turned 70. Williams not only amplified and brought awareness to the life-changing, prevalent disease known as Lewy Body Dementia, but his passing brought much needed attention to the importance of mental health and the non-movement symptoms of depression and anxiety that can accompany a neurodegenerative disease.
Nearly seven years after his passing, what do we know about Lewy Body Dementia? How can we help people with a neurological disease experiencing suicidal thoughts?
Is There Treatment Available
At present there is no cure for Lewy body disease. Symptoms such as depression and disturbing hallucinations can usually be reduced by medication. However, medications to relieve hallucinations may increase muscle tremors and stiffness. Conversely, anti-Parkinson drugs may make hallucinations worse.
Emerging evidence suggests that cholinesterase inhibitor drugs may be quite helpful for some people with this condition.
People with this form of dementia are very sensitive to the side effects of neuroleptic drugs such as antipsychotic medications. It is essential all medications are supervised by a specialist to avoid these severe side effects.
Dementia With Lewy Bodies And Neuroleptics
Neuroleptics, or antipsychotics, are strong tranquillizers sometimes prescribed for people with dementia to treat hallucinations or other behavior problems. However, if taken by people with LBD, neuroleptics may be particularly dangerous. This class of drugs can induce Parkinson-like side-effects, including rigidity, immobility, and an inability to perform tasks or to communicate.
If you or your loved one with Lewy body dementia is not unduly distressed by the hallucinations, it may be better to tolerate them rather than endure the side effects of the medication. If, however, you and your doctor decide to use a neuroleptic, this should be done with the utmost care and monitored carefully and regularly.
According to Lewy Body Dementia Association:
Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible Parkinsonism, or symptoms resembling neuroleptic malignant syndrome , which can be fatal. .
Types Of Lewy Body Dementia And Diagnosis
LBD refers to either of two related diagnoses dementia with Lewy bodies and Parkinson’s disease dementia. Both diagnoses have the same underlying changes in the brain and, over time, people with either diagnosis develop similar symptoms. The difference lies largely in the timing of cognitive and movement symptoms.
In DLB, cognitive symptoms develop within a year of movement symptoms. People with DLB have a decline in thinking ability that may look somewhat like Alzheimer’s disease. But over time, they also develop movement and other distinctive symptoms of LBD.
In Parkinson’s disease dementia, cognitive symptoms develop more than a year after the onset of movement symptoms . Parkinson’s disease dementia starts as a movement disorder, with symptoms such as slowed movement, muscle stiffness, tremor, and a shuffling walk. These symptoms are consistent with a diagnosis of Parkinson’s disease. Later on, cognitive symptoms of dementia and changes in mood and behavior may arise.
Not all people with Parkinson’s disease develop dementia, and it is difficult to predict who will. Many older people with Parkinson’s develop some degree of dementia.
Caregivers may be reluctant to talk about a person’s symptoms when that person is present. Ask to speak with the doctor privately if necessary. The more information a doctor has, the more accurate a diagnosis can be.
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.
Dynamics Of Lb Formation And Maturation Induce Mitochondrial Alterations
To validate our findings that mitochondrial dysfunctions are associated with the formation of the LB-like inclusions, we assessed the mitochondrial activity over time in PFF-treated neurons. ICC for mitochondrial markers revealed strong colocalization of mitochondria with ?-syn pS129+ aggregates starting from D14 after PFF exposure . To assess whether this recruitment of mitochondrial components influences mitochondrial function, we applied a combined protocol of high-resolution respirometry with Amplex red-based fluorometry to measure the production of mitochondrial reactive oxygen species . Routine respiration of intact cells was significantly reduced at D21 , while it was similar to PBS-treated control cells at the other assessed time points . Plasma membranes were subsequently permeabilized using digitonin, and substrates feeding into NADH-linked respiration were supplied. In the absence and presence of ADP, these respirational states did not significantly differ across all tested time points following PFF and PBS treatment.
Specificity Of Lewy Bodies For Parkinson’s Disease
Although Lewy bodies are highly characteristic, they are not pathognomonic for Parkinson’s disease. They have been found in 46 percent of routine autopsies17,39, but their occurrence below the age of 60 years is unusual. These incidental cases may represent early undiagnosed, or preclinical parkinsonism. Yahr’s observations on the frequently subtle and elusive early symptomatology in Parkinson’s disease58 is consistent with this interpretation. An example of Lewy body formation , antedating the onset of parkinsonism, was reported by Stadlan et al.51. The rare occurrence of Lewy bodies in postencephalitic parkinsonism8,39 can be explained by the presence of both postencephalitic and idiopathic parkinsonism in the same patient. Such a coincidence cannot be claimed for a few other conditions where Lewy bodies have been described23, for example for Hallervorden-Spatz disease7.
What Is Parkinsons Disease
PD is a chronic, neurodegenerative movement disorder. PD affects 1 out of every 100 individuals over the age of 601, and patients commonly experience muscle rigidity, changes in speech and walking, and tremors. Some studies suggest that having PD also increases your risk of developing LBD, but most patients have only one of these conditions.2
What Are Pd Dementia Safety Concerns
Safety issues should be considered and monitored from the time of diagnosis. As PDD progresses, ensure that your loved one is not left alone.
- Evaluate privileges before safety is a concern. Your doctor can make a driving evaluation referral.
- Work out legal and financial issues and safeguard finances. People with dementia are at greater risk of falling victim to scams and fraud.
- Minimize prescription risks. Confirm with the doctor the medication names and doses of the person with PD. If the person is in dementias early stages and capable, fill up their weekly pill box together and monitor use.
- Medical alert systems can be critical in case your loved one falls or wanders outside of the home. Many types of systems are available, from bracelets and pendants to smart watches with fall detection and one-button connections to 911.
- Evaluate gun safety. If your loved one owns a firearm or has one in the home, consider speaking with their doctor about the subject and taking appropriate safety precautions.
How Is Lewy Body Dementia Treated Is There A Cure
There is no cure for Lewy body dementia . Medications and nonmedical therapies, like physical, occupational and speech therapies, manage symptoms as much as possible.
Medications called cholinesterase inhibitors help manage the cognitive symptoms of LBD. Memantine may also be helpful. Symptoms of Parkinsonism, like tremors, are usually treated with levodopa, a drug commonly used to treat Parkinsons disease.
You or your loved one may also benefit from treatments like physical therapy or speech therapy. These treatments help retain physical function and improve muscle strength.
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.
For Carers Family And Friends
Living with or caring for someone with dementia can be very difficult. Try to encourage, provide stimulation and help the person maintain as much independence as possible.
For suggestions that may help minimise confusion and make daily activities easier see:
- Mild memory and cognitive problems – Advice for carers, family and friends
Content last reviewed: May 2018
Signs And Symptoms Of Lewy Body Dementia
As with Alzheimers disease or Parkinsons disease, the symptoms of Lewy body dementia worsen over time, with intellectual and motor functions deteriorating, typically over several years. Despite the overlaps, however, there are symptoms that indicate the disorder is indeed LBD and not another condition.
While patients with LBD lose cognitive function, they are less prone to the short-term memory loss associated with Alzheimers disease. More commonly, they experience greater problems with executive functions of planning, decision-making, and organization, as well as difficulties with visual perception, such as judging and navigating distances. This can cause you to fall or faint frequently or become lost in familiar settings. Lewy body dementia can also cause sleep disturbances, including insomnia and daytime sleepiness.
If you have Lewy body dementia, you will also exhibit at least two of four core features:
Changes or fluctuations in awareness and concentration. You swing from a state of alertness to appearing drowsy, confused, or staring into space. These episodes can be unpredictable and last anywhere from a few seconds to several hours.
Spontaneous Parkinsons-like motor symptoms, such as slowness of movement, rigid muscles, tremor, lack of facial expression, or abnormal gait.
Recurrent visual hallucinations or delusions, such as seeing shapes, colors, people, or animals that arent there or conversing with deceased loved ones.
Movement Problems And Lewy Body Dementia
Some people with LBD may not experience significant movement problems for several years. Others may have them early on. At first, movement symptoms, such as a change in handwriting, may be very mild and easily overlooked. Movement problems may include:
- Muscle rigidity or stiffness
The Common Types Of Dementia
Dementia can be defined as a decline in mental ability severe enough to interfere with daily life . More than often, individuals affected by dementia are over the age of 65. In the United States, there are more than three million cases of dementia each year. According to World Health Organization, the number of people living with dementia is currently estimated at 47.5 million worldwide and is expected to increase to 75.6 million by 2030 . Dementia is caused
How Families And Caregivers Can Best Support Their Loved One With Lewy Body Dementia
In the earliest stages of LBD, a persons cognitive abilities arent as affected, allowing them to live a mostly independent life. However, hallucinations and paranoia will become more pronounced through each stage of the disease, which can be challenging for caregivers.
Because Alzheimers and LBD are similar, many doctors may mistakenly prescribe antipsychotic medications to help with hallucinations, not knowing that these medications actually increase anxiety in their patients.
As a caregiver of somebody with LBD, its your responsibility to inform doctors and medical professionals of your loved ones symptoms, as they may have difficulty communicating.
As your loved one enters into the middle and late stages of LBD, you will probably find it difficult to provide the same level of care required to provide a high quality of life for your loved one.
Its often during the middle and late stages when families consider moving their loved one into an assisted living or memory care community to provide high-quality, round-the-clock care thats necessary for their loved one.
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.
What Is The Difference Between Lewy Body Dementia And Parkinsons Disease Dementia
Lewy Body Dementia is a term used for both Parkinsons disease dementia and Lewy Body Dementia. They have some things in common, but their progression and treatment are different.
While many people with Parkinsons can experience cognitive changes, it is important to know that not everyone with Parkinsons will develop dementia. When we see more severe cognitive changes, particularly when they affect someones function or ability to act independently for activities of daily living, their work or hobbies, we think of that as being a form of dementia, said Dr. Goldman.
With Parkinsons dementia, the motor symptoms precede the dementia. In dementia with Lewy Body the initial core symptom is dementia cognitive changes are early, and motor features, if present, occur either after the onset of dementia or concurrently, said Dr. Goldman.
What Happens In Dlb
People with DLB may have trouble focusing, remembering things, staying awake during the day, or staying asleep at night. They may become more frustrated or confused because of the lack of sleep. They may also hallucinate and see people, objects, or animals that are not there.
Some people with DLB will need help with walking, while others may have hunched posture or trouble using their hands and feet because of stiff muscles. People with DLB may appear to be better and need less help on some days, only to become worse and more confused again and need more help the next day or in a few days. This is because their energy level and focus will vary.
DLB is a disease that changes with time. A person with DLB can live for many years with the disease. Research suggests that a person with DLB may live an average of 57 years with the disease, although this can vary from person to person.
What Other Things Help
There are various ways to help a person with DLB. Speech therapy may help improve communication between people with DLB and others. Physical therapy may help strengthen and stretch stiff muscles and help to prevent falls.
Research has shown that physical exercise helps to enhance brain health and improves mood and general fitness. A balanced diet, enough , and limited alcohol intake are other important ways to promote good brain health. Other illnesses that affect the brain, such as diabetes, high blood pressure, and high cholesterol, should also be treated if present.
What Does Lewy Body Dementia Look Like
Lewy body dementia affects a persons ability to think and process information and it can negatively impact memory and alter personality. Though it shares aspects of other forms of dementia, there are distinct hallmarks of LBD. Lewy body dementia symptoms include:
- Fluctuating attention/alertness: These shifts can last hours or go on for days. The person may stare into space, appear lethargic or drowsy, and have hard-to-understand speech, appearing a lot like delirium. At other times, the person may have much more clarity of thought.
- Visual hallucinations: Often, these are very detailed hallucinations and visions of people or animals, and they can recur.
- Movement disorders: Parkinsons-like movement issues, such as muscle rigidity, tremors, falls, or a shuffling gait or way of walking, may occur.
Caregiver Corner: Lewy What Explaining Lewy Body Dementia
Dementia with Lewy bodies is a common progressive brain disease that affects thinking, movement, behavior and sleep. Approximately 1.3 million Americans have Lewy body dementia, but may not be correctly diagnosed because many doctors are unfamiliar with it. Most people see multiple doctors before receiving the final diagnosis of Lewy body dementia. Their first response is often, Lewy what?
Symptoms and Diagnosis
Lewy body dementia is a general term and includes both Parkinsons disease dementia and dementia with Lewy bodies . LBD symptoms include dementia, visual hallucinations and frequent variations in cognitive ability, attention or alertness. There are also changes in walking or movement, as well as a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams. LBD patients may also have a severe sensitivity to medications prescribed for hallucinations.
Many LBD symptoms are highly treatable and aggressive symptom detection and treatment can improve quality of life for both the person with LBD and their caregiver. Some Alzheimers and Parkinsons medications can help cognition, behavior and movement symptoms. Family caregivers are an important link in the partnership with healthcare professionals and also require significant support throughout the illness. For more information and to find support visit www.lbda.org.
Elizabeth Patrick is the Marketing and Communications Manager for the Lewy Body Dementia Association.
Causes Of Dementia With Lewy Bodies
Dementia with Lewy bodies is caused by clumps of protein forming inside brain cells. These abnormal deposits are called Lewy bodies.
These deposits are also found in people with Parkinsons disease, and they build up in areas of the brain responsible for functions such as thinking, visual perception and muscle movement.
Its not clear why the deposits develop and how exactly they damage the brain. Its thought that part of the problem is the proteins affecting the brains normal functions by interfering with signals sent between brain cells.
Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been very rare cases that seem to run in families.
Treatments For Dementia With Lewy Bodies
Theres currently no cure for dementia with Lewy bodies or any treatment that will slow it down.
But there are treatments that can help control some of the symptoms, possibly for several years.
- medicines to reduce hallucinations, confusion, drowsiness, movement problems and disturbed sleep
- therapies such as , occupational therapy and speech and language therapy for problems with movement, everyday tasks, and communication
- dementia activities, such as memory cafes