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.
Lewy Body Dementia When The Heffalumps And Woozles Look Real
Those with dementia may have a brain that works much differently than ours. But if we link our hands together, we can overcome anything.
Alzheimers is the most common dementia. And overall, Vascular Dementia is the second most common. But Dementia with Lewy Bodies is the second most common degenerative dementia.
What makes it distinctive? The visual hallucinations.
When Do Lewy Body Dementia Symptoms Start?
- Its more likely after 60.
- Its more likely in men than women.
- And its more likely if you have a family history of it.
What Are the Symptoms of Lewy Body Dementia?
Recurring hallucinations tend to show up first.
- Often they involve shapes, animals, people. But its not just something they see.
- Sufferers can hear, smell, even touch illusions.
- Grappling with whats real and whats not leads to struggles in being alert to whats actually going on around them.
As the disease progresses, so do symptoms.
- Muscles become rigid, movement slows, tremors start, walking looks like a shuffle.
- The body struggles to regulate normal nervous system functions, leading to issues with
- blood pressure, pulse, sweating
- digestion, constipation
- falls, dizziness
What Causes Lewy Body Dementia?
Reduced Need For Food And Drink
Someone in hospital or a care home will be supported to eat and drink for as long as they are able however, when someone starts to die, their body no longer has the same need for food and drink as before. The bodys metabolism slows down and becomes less able to digest the food, or absorb the goodness from it. It can be hard to accept these changes when you know a person is dying.
People stop drinking, and although their mouth may look dry, its not a sign that they need to drink.
Ways to help:
Mouth care will give the person comfort if their mouth is dry. You might try:
- wetting their lips with a damp sponge
- applying lip balm
- offering small sips of fluid, if appropriate
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Hello May I Help You Plan Your Final Months
Eight years later, at the age of 68, Bentley was diagnosed with Alzheimers disease. She lived at home with her husband, John, as well as a live-in caregiver, until 2004, when she needed to be institutionalized.
For a while, according to her daughter, Katherine Hammond, the family hoped she would just die peacefully in her sleep. But as the years dragged on and Bentley got progressively more demented, her husband and daughter finally decided to put her living will into action.
Someone Hammond is not sure exactly who resisted the idea of denying Bentley the pureed food and gelatin-thickened liquids that were her standard diet, especially because she seemed to want to eat, opening her mouth whenever they brought a spoon to her lips.
Death brought about by the cessation of eating and drinking might sound scary in prospect, but its said to be relatively painless if done correctly.
Thats just a reflex, insisted Hammond, who made a short video showing that Bentley opened her mouth even when the spoon was empty. There she goes again, the daughter says on the video.
In early 2013, a Superior Court judge ruled that it was more than a reflex, it was an expression of Bentleys desire to be fed he granted the nursing home permission to continue to spoon-feed her. Bentleys family appealed, resulting in Wednesdays court hearing.
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Consider Palliative Care And Hospice As Part Of The Process
Palliative care addresses the overall well-being of people with chronic illnesses like progressive brain disorders and dementia. Palliative care and end-of-life hospice care are not the same thing.
- Palliative care. Palliative care providers can help you work through important decisions about which treatments and procedures will bring the biggest benefits. They can also provide medications to relieve pain, anxiety, emotional distress, and other symptoms that arise in late stage dementia. They may be able to help you access the services of social workers, nutritionists, and therapists to meet a wide range of needs.
- Hospice care. Hospice services can ease the transition to end-of-life care, supplying equipment and treatments that bring greater comfort and make it easier to care for a person in this stage.
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Whats The Difference Between Parkinsons Disease And Lewy Bodies
A patient has his first visit with his neurologist and is told that he has PD, at a subsequent visit the diagnosis is changed to Parkinsons disease dementia , and at a follow up visit the diagnosis is changed yet again to Dementia with Lewy Bodies . Both of these situations understandably cause great uncertainty and frustration.
Unwrapping The Puzzle Of Dementia
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.
As heartbreaking as dementia can be, it is far from cut and dry.
So much research has been done, and we know so much more today than yesterday. For one, again, the fact that it isnt just what happens as we get older.
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Stage : Mild Dementia
At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:
- Difficulty remembering things about one’s personal history
- Disorientation
- Difficulty recognizing faces and people
In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.
Stage : Mild Cognitive Impairment
Clear cognitive problems begin to manifest in stage 3. A few signs of stage 3 dementia include:
- Getting lost easily
- Noticeably poor performance at work
- Forgetting the names of family members and close friends
- Difficulty retaining information read in a book or passage
- Losing or misplacing important objects
- Difficulty concentrating
Patients often start to experience mild to moderate anxiety as these symptoms increasingly interfere with day to day life. Patients who may be in this stage of dementia are encouraged to have a clinical interview with a clinician for proper diagnosis.
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Lewy Body Dementia Symptoms
Symptoms of LBD can fluctuate but usually become progressively worse over time. Early in the disease, fluctuations between normal and abnormal behavior, mood, and cognitive ability can occur. The central feature of this disease is progressive dementia shown by deficits in attention and minor dysfunctions in the early stages that can progress to severe dementia.
In severe dementia, the person’s inability to carry out normal daily functions, loss of recognition of family members, and other severe cognitive, behavior and mood problems can render the individual virtually helpless. Other features include fluctuating cognition, visual hallucinations, and spontaneous features of Parkinsonism such as body stiffness, tremors, shuffling gait, emotionless facial features and/or decreased coordination.
As mentioned previously, the diagnosis is made on the basis of symptoms and their time of occurrence in patients. However, most doctors that make the diagnosis also typically use other tests primarily to rule out other causes for the symptoms.
There are no sensitive or specific blood or urine tests that diagnose LBD. However, routine laboratory tests such as a basic metabolic panel, CBC, thyroid studies, vitamin B12 levels and tests for syphilis, Lyme disease, or HIV also may be ordered. MRI, CT scans, and other studies of the brain are used to help distinguish LBD from other problems that have similar symptoms.
Can You Die From Dementia
The answer to Can dementia kill you? is complicated.
Dementia in and of itself rarely causes someone to pass away. It isnt an acute disease that immediately and heavily affects someones life, like a heart attack or stroke. If you have a loved one showing early signs of dementia, youll still have time to enjoy them.
Instead, as we mentioned above, dementia can slowly progress over time from mild to severe symptoms. As dementia progresses, it can start to affect different parts of the brain and an individuals ability to perform daily tasks. In more advanced stages, a person with dementia may be unable to walk or eat independently. Eventually, the individual will pass away either from age or complications as a result of dementia.
But is immediately dying from dementia likely? No, people who start to show signs of dementia can live joyfully for many more years with the proper care and patience from loved ones.
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Treatments For Dementia With Lewy Bodies
There’s 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.
Treatments include:
- medicines to reduce hallucinations, confusion, drowsiness, movement problems and disturbed sleep
- therapies such as physiotherapy, occupational therapy and speech and language therapy for problems with movement, everyday tasks, and communication
- psychological therapies, such as cognitive stimulation
- dementia activities, such as memory cafes
Faith Hill Opens Up About Losing Her Father To Lewy Body Dementia
Country star Faith Hill recently opened up about what it was like to see her late father suffer from dementia. In the interview, published in People magazine on Thursday, Hill shared how her husband helped her get through the difficult times before, during, and after her dads death in 2019 following a long battle with Lewy body dementia that rendered him unrecognizable.
It was a long passing, Hill said of losing her father Ted Perry to the common form of progressive dementia. Its difficult to lose parents just a couple of years apart and watch them pass right in front of you, said Hill, 54, who also lost her mother Edna back in 2016. My dad had Lewy body dementia and it was difficult to watch a man you know be someone that you dont recognize.
Hill says that as her dad battled his disease, she leaned heavily on her husband of 25 years, fellow country musician Tim McGraw. My dad adored Tim and Tim would visit him daily, Hill told People. McGraw was also a major source of emotional support around the time Hills mom died five years ago. He was so present for the passing of both my parents, Hill said. The singer believes that enduring those challenges together only strengthened and deepened her bond with her husband. You reveal yourself when you are going through struggles and thats just another layer of partnership, Hill explained.
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Stage : Moderately Severe Dementia
When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:
- Delusional behavior
End Of Life Signs In Lewy Body Dementia
The symptoms of Lewy body dementia during the final days are disturbing for both the caregiver and the patient. This is the stage where patients are mostly bed ridden. Movement is slow and muscles are stiff. This results in contractures causing severe pain and discomfort. The loss of balance and impulsivity leads to frequent falls.
Communication problems such as poor attention, voice changes, confusion and word finding problems are a great source of anxiety and agitation among the patients. Additionally, severe hallucinations that are often frightening make the life of the patient quite difficult. Severe psychosis can cause the patient to refuse to eat. Problems with swallowing are often noticeable at this stage, which have their own consequences. Patient sometimes forget to swallow and aspirate food into the lungs. This is one of the reasons of weight loss seen in end-stage disease. Patient may become anorexic resulting in the wasting and weakness of body muscles. Incontinence is another one of the most important features of end-stage and requires toileting.
Long term care for Lewy body dementia is needed from here. The focus should be on making the environment as comfortable for the patient as possible. Some medications may also help. The patient needs lot of assistance and care to survive.
Types of Lewy body dementia
Lewy body dementia may present with two types of clinical syndrome:
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What Are The Signs Of Dementia
Common signs and symptoms of dementia include:
- Problems with short-term memory
- Trouble keeping track of personal items
- Forgetfulness
- Disorientation in familiar places
Dementia affects each person uniquely, so symptoms start and progress differently from individual to individual. If you suspect that your loved one is showing signs of dementia, it may be best to take them to see a doctor for an initial screening and check-up.
Because dementia heavily affects the brain, people often wonder, Is dementia fatal? Below weve compiled some of the top questions and answers about dementias effect on an individuals physical health.
Dying From Dementia Four Dangerous Signs You Shouldnt Miss
The realization that your loved one is dying from dementia is difficult to digest. People are clueless, and they cant wrap their heads around this crude reality. These are undoubtedly devastating moments, but there is no point lamenting over it forever.
Start by studying the true nature of dementia so you can spot the symptoms easily. Dementia is aprogressive brain disease characterized by degeneration of cells that result inthe gradual onset of disabilities. Theearly signs of dementia are vague and arent immediately visible. Also, thereis no timeline to tell us how the effectsof dementia overtake patients.
It varies from one patient to another according to the type of dementia they have and their age. People who suffer from Alzheimers experience difficulty retaining new information such as names, recent events or conversations. These patients also show signs of depression.
With the progression of the disease, they become disoriented, confused and unable to communicate effectively. Similarly, the ones suffering from Lewy body dementia and Frontotemporal dementia reveal a different symptom pattern.
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Caring For A Person With Lewy Body Dementia
On this page:
As someone caring for a person with Lewy body dementia , you will take on many different responsibilities over time. You do not have to face these responsibilities alone. Many sources of help are available, from adult day centers and respite care to online and in-person support groups.
Below are some actions you can take to adjust to your new roles, be realistic about your situation, and care for yourself.
Stage Seven: Very Severe Cognitive Decline
Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with lifes activities, and often need round the clock support.
Dementia affects approximately 5 million Americans each year. Lewy Body Dementia comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If youd like to learn more about Lewy Body Dementia or seek support, please visit us online at lewybodyresourcecenter.org or reach out to our helpline at 833-LBDLINE.
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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 Alzheimer’s 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 you’re not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.