Tuesday, March 31, 2015

Warning: Bandages Hide Major Injuries

One day visiting my Mom I saw her roommate's entire face was black and blue and purple. It was obvious she'd had a major fall onto her face. 

Since she was basically immobile I wondered how this could have happened. 

"Mary" was obviously on some form of drugs because she was always sleeping and no matter what time of day we visited, she was sleeping either in her bed or in her Gerri chair.

As much as we visited, we never saw a family member visiting. We wondered if they knew of the seriousness of "Mary's" fall -- however it happened.

We'd had our own challenges with falls and the facility not acknowledging the seriousness and then Mom suffering the consequences. 

Today, I see that's Neglect but because we're taught to "trust" and to "believe" the facility has the resident's "health and well being" at heart we went months and months before we thought differently.

Now we realize falls don't just "happen".  Yes, age and balance play a part but so does neglect including, as we saw, Mom's call button detached from the wall and no way for her to reattach it. It would be neatly coiled on her bed -- something Mom was incapable of doing.

Or, it would be draped across her bed and appear to be nearby her reclining/lift chair but further examination would show it was either pulled out of the wall or removed from the wall connection.

Yes, I went so far as to take the matter to the Administrator several times but it didn't stop happening. I suppose they had no way to find out who did it. 

We saw it happening several times after Julia (Mom's Undue Influencer who to this day has not been challenged by the State of Missouri for everything we gave them showing what we believed to be false reporting of me as an Elder Abuser and endangerment of Mom) visited.

Guess the State doesn't see each person we believe Julia has and continues to be abused as worth their time and effort.

Mom's Undue Influence cost the State of Missouri in excess of 1 million dollars. How?

In our home Mom received Social Security of a little more than $700 per month -- that was what she would have had to totally live on if she lived alone. Not enough to provide the basics of food, shelter, utilities, clothing let alone any transportation or other needs.

But "Julia", Mom's "friend" who we "understand" (because legally no one can tell us the truth; it's a violation of Missouri State Law to disclose the name or any information about a call to the Elder Abuse Hotline even when no charges came about, no proof was found and severe damages were suffered both emotionally and financially by a family) reported me for financial and emotional Elder Abuse, claimed we were "abusing Mom" but never once reported Mom's facility for the numerous medical and other neglect and abuse.

Yes, dear reader, this incident still bothers me. As it should you. This woman and others are costing you great sums of money and pain and suffering to people least capable of protecting themselves. 

Yet there continues to be no action, no insuring these activities with our Dementia suffering elderly are ended and this woman and others like her are incapable of causing so much harm and pain through tighter laws and more equitable laws.

In the facility, each month cost Medicaid over $5,000 a month PLUS trips to the Emergency Room at least every three months to follow up on falls, cuts, side effects from medications and infections. 

Ever check on how much one night in an ER let alone two or more hospital nights can cost with various tests including MRI's can be? 

Then there was the additional rehab needed because for each day in the hospital you're set back at least two to three days in your regular abilities (or so I've read).

These were all medical conditions poorly treated and escalated for many reasons including failure to recognize the severity of the original problem and just plain neglect to see or handle in a timely manner.

Mom's cost to taxpayers was in the hundreds of thousands a year due to neglect that became abuse. If you've read this blog you know it was reported, know it was "minimalized" by the facility and by the State of Missouri.  

And my Mom wasn't and isn't the only casualty and fatality. We watched many die from neglect and live under conditions as saddening as the commercials for abused animals on TV.

Reporting doesn't work. It's like applying a bandage to a hemorrhage. Major changes must be made.

Facility Rules and Regulations and State Laws are like "bolts". Some need to be tightened, some need to be removed and replaced and some need to be adjusted.

Many times Mom came back and needed to go into the facility's "Rehab" and have physical or other therapy. Ignoring minor medical challenges and allowing them to escalate improved the chances of the facility providing a higher level of medical care and payment and therefore an incentive.

Then, there's "the coverup". It's a call from the facility to advise a resident has fallen but it's not an accurate description of any injuries sustained. Or, it's no call at all especially if the family/responsible party is only an occasional visitor or if the facility believes they can cover it with a bandage or it's in a place that won't be seen.

Mom suffered a fall and lacerations on her head one time and her facility called to tell us she'd fallen but was fine, she was sitting up and eating. I wanted to rush over but they told me it wasn't necessary and if I couldn't make it that day, the next would be fine as Mom had been checked out and everything was fine.

Of course, there were no x-rays (did you think they took them for falls, they usually don't). And, of course, when I arrived and looked at Mom's head there were open wounds that definitely needed stitches and so off to the ER we went while the facility and especially the Floor Nurse kept trying to tell me Mom was fine, those were nothing. Right.  Four staples later, pain meds and rehab -- again -- Mom received the care she wouldn't have had without the attention of me, her accused "abuser" and my daughter (who was never accused or mentioned but who lived in the same house with Mom as my husband and I).

Today, here's the advice I would give

BANDAGES AND COVERS. Make the facility change a dressing while you're there and stand there and examine the area that's been covered. 

Do your own "body check" and ask your loved one (if they are capable of realizing) what "hurts", "pinches" or might be sore. Often bruises and cuts can be under clothing and in areas not visible. 

Do this frequently. Don't accept being told it's not time or it was just done. Protect your loved one.Look beyond what you're told is reality and see for yourself.

BODY CHECKS. No this isn't a hockey term. Facilities are supposed to physically check individual's bodies to ensure there are no growths, skin changes, swelling, etc. 

Ask to see the record and read it to see who made the last examination, when and the findings. Pay for a copy and ask when the next one will be done.

BUILD A FILE.  Their file is theirs. You need your own to track medications, research their effects and understand treatments and for so much more.

READ THE RECORD AND GET COPIES.  
Yes, it's a challenge and it takes time but this is the right of anyone who is appointed by the individual resident and should be part of your consideration of placing someone in a residential facility -- an appointed representative to receive or request any and all information related to the care and living of an individual in a Long Term Care facility should be another certified document in your file for future care.

I read my husband's hospital file long before he was released. He spent almost 100 days in Critical Intensive Care and his record for that one stay was in excess of 1500 pages.

Know what I found out?  According to one entry, he'd had a gynycological exam and there was a report on the findings

Now, I lived with this man for over forty years and that "exam" surprised me . . . almost as much as another report...

Another report cited my husband had had a "previous" amputation of a leg.  News to me --- and to him.

ERRORS ARE MADE. DR'S ARE NOT PERFECT. FILES GET MIXED UP.  

This is where mistakes happen and errors abound.  

MY ADVICE:  At least quarterly for Long Term Residents, arrange to READ every page of your loved one's record and not just the medical record -- all reports, all submitted to Insurance, the State, the DHSS, any and all governmental authorities, all evaluations for whatever cause or consideration or purpose.

You will be surprised at how much information is gathered on our Elderly without their knowledge or real consent. 

You will being to learn, through becoming familiar with various "tests" and researching them and also medications and researching them, how limited the tests are.

You'll get to know how they're used to "prescribe" medications including hallucinatory drugs to control "behaviours" that are "judged" by unqualified individuals allowed to practice by your State without a license and advise absent medical personnel, Doctors, on mental health.

PROTECT YOUR LOVED ONE. PROTECT YOURSELF IN THE FUTURE.  Get to know and understand the laws that govern life and living in a Long Term Care Facility for the reality of what they are and what they do not do.

Your loved one's life can hang in the balance. 
Your future life will be determined by what you decide to do now when you can.

Saturday, March 28, 2015

Population of Seniors in US Reaches 1 in 5

Listening to NPR and new stats of 1 in 5 United States citizens will be aged 65 and older very shortly.

Listen Up America.  This generation is followed by another record breaking generation no one's mentioning -- the Baby Boomer's Children or Generation X.

And, with life expectations lengthening, we'll soon have a record breaking population of Seniors in the 65 to 95 age bracket.

What are we doing to increase the health and well being of our aging population?

Well, we're continuing to break them down with ageism and lack of accommodation.

Example:  Daughter's in a class that includes a man in his 70's who is being "harassed" by a man in his 50's. 

Both had to pass exceptional ability tests of all ages few survived including those in their twenties and early thirties.

Both "belong" by these standards and by their daily performance, but this man is already concerned there won't be enough "share of the pi" to go around, apparently. 

Of course, the "younger" man cites the "older man" should "make way for the much younger generation" but the 50's something guy should be glad the 70 something man is there.

Replacing him with a 20 or 30 something individual would be statistically more detrimental to the 50 something man. Think about it -- younger, more years to work, better investment for a company, etc etc.

The 50's something man is typical of his age group and of our society as a whole.

He's reached the age of seeing the future and he doesn't like it. He's experienced the end of life as he knew it -- no longer employed.

By 40 something in most jobs, there's weeding of personnel. Those who are "chosen" get the opportunities and advancement, those who are "left behind" begin the weeding process that starts around this age and by 50 is in full swing.

Early retirement to forced retirement or even lay offs, discontinuation of a position (change of position with requirements known the individual cannot fulfill) and so many other ways to "cull and remove".

The 50's something guy is smart. He's realized he has to retrain and do it quickly in a field that needs so many more people than it has because he has a higher chance of getting a coveted job simply because of the scarcity.


He also knows he has to survive and survival means "attacking" or somehow overcoming any member of the species that seems "weaker" or "vulnerable".

He's found what he believes is an easy target and one he believes others will also select for "removal" or at least for "overlooking" in their own favors.

However, as with any other skill set or requirement, soon there will be an influx of "newbies" trained along the way from high school onward and needing a little extra "monitoring" but still workable and hireable. 

Many are "taking courses" on line for the "new" world we've created. It's common knowledge in the computer coding community, for example, people are training and learning by themselves and therefore need less "help" and instruction. 

Machines instructing could be replacing the vast collegiate market created with the Baby Boomer generation. 

Already they're being used as the "main instructor" with previous lead instructors becoming mentors, advisors and providing clarification or assistance rather than being a main source of securing basic information and instruction.

Then what? With this advent of learning when and where you want, what will our economy look like in the future with less need for "classroom" instruction and those college degrees that cost so much and took so much time? 

What will we do to control the influx of new talent and ability to maintain a balance within the 25+ age groups if we reduce the age of challenging others for space in the job market reduces from 20 something to 18+?

When we become a nation of data entry, data movers and data providers, isn't that moving the needle backwards to the time of having more jobs at lower pay because less education was needed? Or, at the very least, positions that are easier to fill and therefore have a higher turnover rate?

My opinion is the most affected segment of the population are those currently past 65 and the many more entering this age group daily and the Millennials who are behind the next generation of Seniors and in front of those who were "born into" the Computer Age and basically given internet access as a birthright and entitlement. 

After all, schools have changed and society has changed -- computer access can be everywhere including at libraries and training starts early in the most current computer procedures, applications and configurations.

Yes, the 50 something man has the most challenging role to play in life as he sees it. But he's already in the Senior category and if he doesn't value that age group and their needs and rights now, he'll soon be experiencing first hand what he failed to recognize and take action to change.

Our society cannot succeed with so many NEW Seniors "put out to pasture" at an age that once was "acceptable" for "retirement" but now leaves the door of many more years of life for which to provide.

Seniors today can do just so much "socializing". Faced with many more years and skyrocketing medical and even basic costs of living including the cost of food, utilities, property taxes, transportation, the savings for many has been greatly affected by each decade's monetary crisis from the 1970's onward and from dynamically climbing costs of living.

Yes, there are and will continue to be a select number of people who are "well off" but those figures are swiftly declining as our economy shifts to placing even our younger members into the ranks of the unemployed while we adjust to the "new economy" and "new work world".

Jobs should not be allocated or designed to exclude or eliminate. All age groups are valuable assets. 

Ageism is the new way we control economic adjustments we haven't been able to control with creating jobs that value and recognize differences and abilities.

Friday, March 13, 2015

Mobility and Other Signs of Dementia

Just found another website I want to pass on to you http://www.dementiaguide.com/

Lewy Body Dementia and other Dementias may be right in front of you.


It was for me. I saw them as "signs of aging".


We don't talk openly as a society about aging because we've provided so many stigmas about the process and the results.


Everywhere you look women and men are told to focus on their outward appearance. At work, they see the need to continually improve skillsets. There's never enough time in a day to achieve and to reach for what we're told we should want, need and have.


We're on a constant merry-go-round reaching for the gold ring.


It's not surprising we're oblivious to Dementia until it comes directly into our lives. Even then, it has to come into our "face" before we notice and many still don't reach out, try to manage and try to intercede.


Here are some signs of Dementia in process. They're not always there and they're not always a definite "signpost" but they should be seen as discussion points with your loved one and with a medical specialist.


They're from the website www.dementia.com



"Mobility | Common Signs

Requires walking aid 

Walking aid
A device that assists a person in being mobile. It can provide the balance necessary to make them comfortable enough to walk, like a cane, or it can be a wheelchair to assist them in moving when walking is not possible.
(such as a cane or walker)


Can walk but only for limited distances
Requires a wheelchair
Feels more comfortable having one person standing nearby when walking or moving
Requires one person's assistance when walking or moving
Needs positioning in bed
Difficulty getting up from low, deep or soft chairs
Has developed pressure sores 
Pressure sores
Areas of injured tissue and skin. It is caused by lying or sitting in one position for too long. As a result there is a lot of pressure on this part of the body, and blood flow to this area is decreased. Common areas for pressure sores include elbows, heels, and back of the head.
Has problems walking outside or on uneven surfaces
Hesitates when going through doorways
Is afraid to use the stairs

Mobility | General Description

Most dementias will at some point in their course, affect areas of the brain that are responsible for movement and balance

Balance
The ability to sit or stand upright without falling over or slumping into a potentially dangerous position.
. Usually, families will note that the person walks more slowly. After a while they will commonly describe the person's walking as being "uncoordinated". These aren't bad descriptions, but they are not what doctors say, because we tend to think about symptoms and signs of dementia


Neurological
Relating to neurology.
disease) in terms of which part of the brain is affected. 


When it comes to problems with walking in dementia, unless it is due to a stroke


Stroke
Blood supply to the brain is interrupted, usually by a blood clot. As a result, a portion of the brain can die from not receiving enough blood and oxygen.
that gives rise to paralysis 


Paralysis
An inability to move part of the body.
, or other less common, specific, local causes, doctors tend to approach the problem by considering two types of problems. One has to do with slowing, and the other with how the brain integrates all the information that is needed for precise movement.


The first problem - slowing - typically is part of a syndrome called "parkinsonism". The term is related to, but slightly different from Parkinson's disease 

Parkinson's disease


A progressive, neurodegenerative disease characterized by the death of neurons in the brain. The disease has been linked to a lack of the neurotransmitter dopamine which has consequences such as tremors, speech impediments, movement difficulties, and often dementia later in the course of the disease.
. Parkinson's disease affects movement in many ways, but traditionally these are grouped under four headings: tremor (a rhythmic form of shaking); slowness of movement (the fancy term is bradykinesia) 


Muscle
Body tissue that contracts to produce movement or force.
stiffness (the technical term that doctors use is rigidity; we use it to distinguish it from the stiffness seen with a stroke, which is called spaticity) and the tendency to fall (we call a fall a fall, but we call the tendency to fall postural instability). 


To be able to move about either on your own or with the use of a walking aid. problem for a person with dementia is slowing, as an aspect of parkinsonism. Other signs of parkinsonism that have to do with walking are that the steps shorten, the posture becomes stooped, the space between the feet (so-called "base of the gait Gait


A manner of walking, running or moving on foot.
") narrows, and there is less arm swing. When the person turns, they no longer pivot on their heels, but instead turn in a series of short steps. During the turns, their balance can become unstable; they are especially likely to fall backwards. Another related problem is that the person can seem to freeze in place when they walk through a door frame.

The second type of problem overlaps a little with the first, and is commonly described by families as the person they care for being "uncoordinated". (The technical term that doctors use for this is "apraxia"; we use "uncoordinated to mean a problem with a structure at the back of the brain called the cerebellum. And of course, when we really start in on talking about incoordination, we quickly switch over to another term, called ataxia.


Even so, it makes me hesitate to use the term "incoordination" when what I mean is apraxia, not ataxia. What families typically see in the person who is having trouble walking that goes beyond simple slowing and parkinsonism is that the person with dementia first has problems starting to walk. The starting to walk (the technical term is "gait ignition" can be part of parkinsonism, or a sign of apraxia. Either way, sometimes 'sensory tricks' can help.


Very early in the course of apraxic walking in dementia, a cane or a walker can help. It is common to see a person go from a slow, cautious gait, to an almost normal walking pattern simply by taking up a cane. In fact, I have often seen the cane work when the person holds it in their hand, without the can actually touching the floor.


Later, however, a more common picture is the person with dementia requiring physical "hands on", such as touching by another person to start walking or to rise out of a chair. When the problem is first one of getting started, families often comment that the person they care for does not need anything more than a touch to get out of the chair, but can't seem to get out of the chair without it.

There are types of problems with starting walking (with gait ignition disorders) that respond to a variety of what is known by the trade as "sensory tricks". For example, vigorously stroking the leg that you want the person to start moving, or seeing if they can lift their feet up and down to march in place, or seeing if they can step over something to start - a line, or sometimes you can put one foot in front of theirs and ask them to step over it. Many people who have been in the armed services will respond to the command "quick march" spoken softly into their ear. Frustratingly, although some tricks often work, none of them work all the time.

It is also important to remember that people with dementia can have problems with walking that are not due to the dementia itself. Exhaustion can limit how far a person can walk, as can pain. Sometimes pain can reflect an unattended problem in foot care. Usually, a doctor or physiotherapist 


Physiotherapist
A health professional who assesses a person's physical function and specializes in physical methods of treatment to return to health.
can tell just by looking at how someone walks, whether the problem is neurological or due to pain, and if due to pain, whether it is a problem of the hip, the knee, or the ankle/foot.
To sum up, common problems of mobility in a person with dementia are:
Problem

Common Causes
Walks more slowly

Parkinsonism
Walks with a narrow base

Parkinsonism
Cannot start walking

Parkinsonism or apraxia
Cannot continue walking/ can only walk short distances

Exhaustion, pain or apraxia
Freezes in the door frame

A classic sign of parkinsonism
Walks with a limp

Pain in the hip, knee, ankle or foot; stroke
This is not meant to be an exhaustive list, just to help summarize the points made above. An exhaustive list would have to include, amongst other things, walking with a broad base, or with a "scissors" gait, in which the knees come together but the feet are apart, or various types of problems seen when the cerebellum is affected, or disorders of walking that are accompanied by a lot of extra movements, just to name a few. The point is that abnormalities of gait are generally explicate, even if the explanation does not often give rise to treatment.

Treatment of mobility problems in dementia

For all the different types of problems, there are only just a few treatments. Sometimes a physiotherapist can help, especially if a walking aid


Walking aid
A device that assists a person in being mobile. It can provide the balance necessary to make them comfortable enough to walk, like a cane, or it can be a wheelchair to assist them in moving when walking is not possible.
is going to be used for the first time. A physiotherapist can also help by showing exercises that can strengthen muscles, especially those around the hip, which help prevent falling. Many people with dementia can still learn to do simple repetitive exercises, and get some enjoyment from it. Physiotherapists who work with dementia patients commonly observe that as the person exercises more, they exercise better, and often seem more engaged. Families commonly notice this too.

It is controversial whether treatment for Parkinson's disease works for people who have parkinsonism in dementia. Some things are clear. If the parkinsonism is due to or made worse by medications (especially
neuroleptic 


Neuroleptic
A class of drugs used to treat psychosis.
or antipsychotic medications) these need to be used in the lowest possible doses, or even discontinued if that is possible. It is also clear that the motor parkinsonism of Parkinson's Disease Dementia should be treated.

In Parkinson's disease, some drugs work by lowering the amount of the brain chemical


Neurotransmitter
A specialized chemical messenger such as acetyl choline, that sends a message from one nerve cell to another. Neuortransmitters are responsible for the communication within the brain and also between the brain and other parts of the body.
) acetylcholine. These drugs must be avoided in people with dementia. Most drugs, however, work by increasing the amount of the brain chemical (neurotransmitter) dopamine 


Dopamine
A neurotransmitter found in the brain that has been associated with Parkinson's disease.
. If a dopamine preparation is to be used, this needs to be done with great care, as a side effect


Side effect
An undesired effect of a drug treatment that may range in severity from barely noticeable, to uncomfortable, to dangerous.
can be hallucinations or delusions. This dilemma arises most often in Lewy Body dementia where the parkinsonism is most classically like Parkinson's Disease, but where hallucinations can be a very difficult problem.
Sometimes, in people with
Alzheimer's disease 


Alzheimer's disease
A neurological disease that affects memory and behaviour. It is characterized by beta-amyloid plaques and neurofibrillary tangles in the brain. There is no known cause but genetics and lifestyle are thought to play a role.
, mobility problems due to apraxia can improve by treatment with a cholinesterase inhibitor 


Cholinesterase inhibitor
A drug which stops the effect of cholinesterase
(the first-line drugs for treating Alzheimer's disease). In the days when cholinesterase inhibitors were first being used, I saw this many times, because it was common to see people with moderate dementia who had never been treated. Now that treatment is so widespread, I see it less often. Where I now see it most is when patients who have been on one cholinesterase inhibitor are switched from that to another, or sometimes when memantine 


Memantine
An NMDA receptor antagonist used to treat moderate to severe dementia. It effects the glutamate neurontransmitter, not the acetyl choline like many other dementia drugs do.
is added.

When mobility impairment means the person can no longer walk

As the person you care for becomes more and more immobile, they might no longer be able to walk. Sometimes this comes on suddenly, after an acute incident


Acute
When something is "acute", it means that it is generally short in duration and usually severe.
illness that has required the person to be in hospital. mobility can be lost quickly on that setting, and sometimes it is very difficult for rehabilitation to occur. Problems with mobility are a common reason for a person with dementia to be moved to a nursing home. Care for a person with dementia who is immobile enough to be bedfast is very difficult. Many other problems go with it, including constipation 


Constipation
Abnormally delayed or infrequent passage of dry hardened feces.
and blood clots. Pneumonia 


Pneumonia
Inflammation of the lungs that results after bacterial, viral or fungal infection.
occurs more often. Pressure sores 


Pressure sores
Areas of injured tissue and skin. It is caused by lying or sitting in one position for too long. As a result there is a lot of pressure on this part of the body, and blood flow to this area is decreased. Common areas for pressure sores include elbows, heels, and back of the head.
can also be seen, and even tough larger pressure ulcers 


Pressure ulcers
See pressure sores.
present as failure of care, smaller ones can develop quickly and insidiously, especially in people whose circulation is poor.For most people with dementia, being bedfast signals the terminal phase. In that phase, it is appropriate to consider palliative 


Palliative
Treatment that relieves or reduces uncomfortable symptoms such as pain, but does not provide a cure.
care.

Other notes on mobility impairment

Mobility impairment occurs more often in some types of dementia than in others. People with
Frontotemporal dementia 


Frontotemporal dementia
A type of dementia that mainly affects the frontal lobe causing a problem in executive function tasks.
can show rigidity of movement as the dementia progresses. It is characteristic of Lewy Body dementia, Parkinson's disease dementia, and a group of dementias associated with so-called "parkinson-plus" disorders, such as multiple systems atrophy 


Atrophy
The shrinkage of tissue or muscle.
, progressive 


Progression
A disease that is increasing in severity; going from bad to worse over time.
supranuclear palsy and a related disorder called corticobasal degeneration 


Degeneration
Deterioration, usually of tissue, to a lower or less functional form.
(CBD). Frontotemporal dementia sometimes is accompanied by Amyotrophic lateral Sclerous (ALS), so that immobility occurs early in the course of their illness.

What's new with mobility and balance?

One of the most active areas of research amongst people who study how the brain controls movement is that sometimes mild parkinsonism - usually mild slowing - can be the very first sign that a dementia might be starting. Slow movement can preceed other signs for up to five years. The area is challenging however, because as people age, many slow down for a variety of reasons, and not everyone who is slow gets dementia. Even amongst people with parkinsonism, it only increases the risk. It does not mean that dementia is inevitable. The hope amongst people who are doing this research is that if it is an early sign of dementia, it can be treated in some way so that the dementia can be prevented. Several groups are actively engaged in this research worldwide. One respected researcher whose work can be looked at is Richard Camicioli at the University of Alberta."


Hope these notes help someone. Wish I'd had more guidance and more truly compassionate direction. Unfortunately, too few people are out there and not enough direction to show us the path and the way that will make our journey and our loved one's journey a little easier.


If you're journeying with someone who has Dementia of any kind please know that you are appreciated and valued even if the person can no longer realize what you are doing or believes what you are doing isn't helpful.Your care and concern are invaluable. 


Know you are appreciated and know you are greatly valued.



Wednesday, March 4, 2015

What Is Lewy Body Dementia?

helpguide.org

What is Lewy Body Dementia?

This site's entry appears to be  updated as changes in Neurological and other studies are discovered so it's a good one to reference. I also like the way the information is presented -- organized and major points summarized in an easily read and followed presentation format.

MOST IMPORTANT:  LBD is a progressive disease and unlike Alzheimer's with its more visually observent mental challenges and Parkinson's with more physical challenges, LBD can be more hidden due to the brain having the ability to "mask" many symptoms and for the individual to retain the ability to "manipulate" or "cover up" more symptoms until the later stages of the disease. 

As with my Mom, her brain seemed to continue to adjust and her vast depth of memories and capabilities in some areas seemed to overcome the diminished capabilities she was experiencing.

My personal belief is the loss in the reasoning, the executive functioning, when the person is quite elderly or does not live alone, is often not noticed as readily but thought of as common and usual to growing older when in fact it is a marker overlooked by the person dealing directly with the disease and those closest to them.

Here's a brief summary but please click through to the website for more specific and current info:

"Lewy bodies are abnormal microscopic protein deposits in the brain that disrupt the brain's normal functioning causing it to slowly deteriorate. The effects include a degradation of cognitive functioning, similar to Alzheimer's disease, or a degradation of motor control, similar to Parkinson's disease. Lewy bodies are named after Frederick Lewy who first observed their effects.

Lewy Body Dementia can start differently in people. Sometimes those with LBD initially have a movement disorder that looks like Parkinson's but later they also develop dementia symptoms. Others have a memory disorder that looks like Alzheimer's but they later develop hallucinations and other behavior problems. Over time most people with LBD develop a spectrum of problems that include great variations in attention and alertness from day to day, recurrent visual hallucinations, shuffling gait, tremors, and blank expression, along with various sleep disorders.

Signs of Lewy Body Dementia
  • Mental decline. Lewy Body patients may experience reduced alertness and lowered attention span.
  • Recurrent visual hallucinations or depression. Hallucinations, usually related to people or animals, occur in most LBD patients. Depression is also common.
  • Increasing problems handling the tasks of daily living. Tasks that used to be simple may become difficult for a person with Lewy Body Dementia.
  • Repeated falls and sleep disturbances. This includes insomnia and acting out dreams.
  • Fluctuations in autonomic processes. This includes blood pressure, body temperature, urinary difficulties, constipation, and difficulty swallowing.
Some of the motor symptoms found in both Parkinson’s and Lewy Body Disease's patients include:
  • tremors
  • muscle stiffness
  • difficulties with balance
  • shuffling gait
  • stooped posture
  • slow movements
  • restless leg syndrome
Some of the cognitive symptoms found in both Alzheimer's and Lewy Body's patients
include:
  • behavioral changes
  • decreased judgment
  • confusion and temporal/spatial disorientation
  • difficulty following directions
  • decreased ability to communicate

Diagnosis and treatment of Lewy Body Dementia

Being diagnosed with an incurable illness, especially one that involves dementia, can be an overwhelming experience. Because the treatment for Lewy Body dementia focuses primarily on symptom management, it's helpful to take as proactive an approach as possible right away. This means working with your physician to control symptoms and make lifestyle changes to accommodate the effects of the disease.

How is Lewy Body Dementia diagnosed?

Since the Lewy bodies themselves can be identified only by autopsy, an accurate diagnosis relies heavily on physician awareness of the defining characteristics of the disease. A brain scan can detect mental deterioration, but not the actual Lewy bodies.

Once other possible conditions have been ruled out, the optimal route for diagnosis is a thorough medical history that focuses on the pattern of symptoms and looks particularly for the hallucinations and sleep disturbances that are common to LBD patients.

Dementia with Lewy bodies and neuroleptics

Neuroleptics are strong tranquillizers usually given to people with severe mental health problems. They are sometimes also prescribed for people with dementia. However, if taken by people with LBD, neuroleptics may be particularly dangerous. This class of drugs induce Parkinson-like side-effects, including rigidity, immobility, and an inability to perform tasks or to communicate. Studies have shown that they may even cause sudden death in people with LBD. If a person with LBD must be prescribed a neuroleptic, this should be done with the utmost care, under constant supervision, and should be 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 (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure).

Proactive ways to help someone manage Lewy Body Dementia

Taking a proactive approach to managing the symptoms of LBD is important and small things can make a big difference.


  • Become informed. Learn as much as you can about Lewy Body Dementia and how it is likely to affect your loved one specifically, given his or her health history, age, and lifestyle.
  • Create a routine. It may help people with Lewy Body Dementia to have predictable routines, especially around meal times and sleep times.
  • Establish a nighttime ritual. Try to establish bedtime rituals that are calming and away from the noise of television, meal cleanup, and active family members. Limit caffeine, discourage napping, and encourage exercise.
  • Modify tasks. Break tasks into easier steps and focus on success, not failure.
  • Walk together. Taking a walk with the patient with LBD is a win-win activity. Being outdoors and exercising is vital for the health and state of mind—of both of you.
  • Strengthen senses. Have a doctor evaluate each the patient’s five senses in order to identify and treat any abnormalities. Then ask about exercises to improve them.
  • Make behavioral changes. To help minimize the risk of fall-related injuries, you can help stabilize blood pressure. Help your loved one stay well hydrated, exercise, take in adequate sodium (salt), avoid prolonged bed rest, and stand up slowly."
PLEASE NOTE:  Proactive ways to help above are far easier to enact in a home care environment than in a Facility where schedule, routine and institutional rights supersede individual rights.

UNTIL THE TIME when we have more transparency either voluntary or mandated by the general public advocacy and insistence, Seniors in facilities are subject to the "business" of providing a living environment where profit and/or the "business" of Senior living is more important than the humanity.