This is a question regarding stages of Lewy Bodies.

Does anyone know what stage of the disease has aggressive behavior, violence, and hallucinations?

I am trying to determine what the next phase might be. If there are various stages that have been identified, it would make sense to try to plan for the next stage.

We have definitely gone to a new level of the disease. My sweet, kind, non-confrontational husband is now an aggressive, violent man while he is hallucinating.

Does anyone know what might help at this stage?

Does anyone know what to expect next?

Thank you.

Sure wish I could answer the question about stage. I can't but I can tell you that if he is aggressive something is probably bothering him [physically maybe]. and he is trying to let someone know in the only way he can. Is he constipated? Urinary infection {UTI] Restless legs syndrome? Overly tired? Too cold? Too warm? Dry skin? Thirsty? And on and on and on. Hungry? Its not easy and we have no patterns to go by. Each and every Loved One seems to be different. We do have guide lines and the aggressiveness seems to go along with discomfort or maybe a medicine is not agreeing with him. Sorry I can't be of more help, maybe someone else can offer a suggestion. I keep frozen fruit bars on a stick for times like this... or a frozen chocolate bar. It takes his mind of the problem as well as giving him a little liquid.

If the hallucinations are frightening enough to cause aggressiveness then I do hope for him as well as you that you can bring that behavior under control... That is so sad.

Good luck.

Dorthea

Colleen,
Have you discussed this aggressive behavior with your husband's MD? I would do so right away. Keep a log as to what was going on that may've triggered the behavior and what time of day it is. Hopefully this can be treated either by identifying its cause (see Dorthea's post about infection) or by medication.
Good luck,
Robin

On a piece of paper, mark down the date of the first symptom you can remember..make a dot.

Follow your memory to 6mos/1year/etc. later and make a dot where you see the decline.

Then connect the dots to see the line of decline..

This will give you an idea of the progression, which will continue downward.

That line is an indicator for the future.

I haven't done that yet..but it does intrigue me.
blessings, mm

What an interesting way to chart the progression. You learned so much for us, didn't you, MM? I do not have dots and might not be able to go by memory but I do have every email I sent to my children concerning their father. It is recorded. Also, I have recently been envolved in arrangements for post mortem brain donation, thanks to Robin for her pointing out the importance as part of our caregiving. Part of the planning is asking the doctors who have cared for Mr B. to send records pertaining to this illness to Mayo Clinic Jax as evidence of the declining years. The neurologist report was for one visit only and he sent it immediately, I have not heard from the geriactric psychiatrist but I'm hoping he just sent the records [as I requested] without notifying me [I will find out about him later]. Our long time primary care physician, Dr. W., told me with a grin, "We're working on it". I feel from his attitude that he is also interested in a positive diagnosis. I expect his right hand man, Jennifer, is burning midnight oil to do this research from twenty-five years.

The question of stages plagues us as we go about the caregiving duties. There is little we can offer our fellow workers, however, we can do as MM as suggested and try to come up with a timeline. We are the first generation to begin working on this and we can leave our mark as we go about doing what is best for our LOs; prolonging their life and comfort by observing , keeping records, charting, and making arrangements for post mortem brain donations. Future generations will thank us for spearheading this research as we walk through the natural progression with our families. We can be proud that we have done everything possible for others in the future as well as our own satisfaction and especially the loved one in our care.

DrP

At first when the doctor suggested we do this, I did not quite understand the importance. When he indicated that the slope of decline could be followed to some semblance of an "end," it make more sense.

He also commented on how important it is to arrange for post-mortem donations..but that some labs do not do that because there is no charging off the cost..the reasoning I did not quite get, but what it amounts to is that living medical issues are insurance charged, but post-mortem things are "gratis."

blessings, mm

MM, it must be that way: Post mortem to be "gratis". When you think about it, if "they" start charging either private or insurance, think of the chances for "hanky-panky". Therefore we need to find research labs who are existing on grants and/or teaching and work with them. It can be done with diligence and determination as we follow the dots and give loving care!

Colleen,

I too wish there were a "stage" or "progression" we could follow. Just when you think you have it...oops...another wrench is thrown in the pile of jumble.
My LO also had some very aggressive bouts at times...that was a while ago...lately it is more verbal abuse than anything...and that comes and goes too. Just never know what will happen on a day to day basis. Today he told me how I do not take good care of him, am mean, demeaning. It hurts to the core, especially when I have no life anymore...I spend all of my time trying to care for him in the best way possible...with kindness, tlc and dignity. I guess the unappreciation is what hurts the most...but then you have to consider the source. Hard to do but its a fact. He even told the neighbor I am mean. She knows better but it hurts to know he tells folks this.
Today he called me from the dressing room...here sat his shower chair covered in poo...with the commode only 2 feet away!!! I was so dismayed...not used to cleaning that kind of a mess. Incontinence is one thing but this was a horrible, huge mess. He got very angry that I was upset and told me how terrible I was to him. Believe me, I bit my lip really hard to keep my mouth shut...listening to these comments while cleaning up that terrible mess. Can't win for loosing.
MMs idea about dot connecting is a really good one. I am going to try that. Its like a roller coaster here...ups and downs ...never know what the day will bring.
If your LO is getting physical you need to report it to the dr. immediately as that is something that could be dangerous to you. There is an article that was posted here by a Geri Hall relative to physical abuse. Please read it. It changed my mind about a few things.

Wishing you all of the luck possible. Prayer for you and all caregivers tonight.

..the worst it gets is that my Dear One neglects to wipe himself so I have to be on constant alert when he poops..sometimes in the middle of the night. Damn..who would have "thunk" (as my mother would say). Here was this New England Yankee..very meticulous, very private..now reduced to this.

bless us all for doing what we do..even if murder is on our minds..mm

Your Mother was SO right! Same here...fastidious, borderline fanatical about cleanliness, dress, etc....reduced to this. I do what I can ...as best as I can...but this was way beyond my realm...or my world of "thunking."

Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. It is developed to assist newly diagnosed families with a framework to refer to. As one retired spouse has said, “To be forewarned is to be forearmed.”

The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to “ebb and flow” or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. In addition, patients that are “high-functioning” may also show symptoms of Phase III or IV. By no means will a patient display all the symptoms listed in any specific phase. Therefore, each phase is described with “possible” symptoms.

PHASE I POSSIBILITIES
Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny
· Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking)
· Increased daytime sleep - two+ hours
· Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems
· Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean)
· Chronic runny nose
· Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness
· Short-term memory loss but able to hide (mask) symptoms or engage in show time
· Mood: Fluctuations; depressed/anxious; paranoia; 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
Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase.
It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO.
Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
· Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance
· Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation
· Parkinson’s symptoms may be controlled with medication
· Increased difficulty in:
Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances
· May be able to administer own medications.
· Able to follow content of most conversations
· Able to be left unsupervised for two or more hours
· Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated

PHASE III POSSIBILITIES
Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care.
Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.
· Ambulation/transfers are impaired, needs assistance with some portion of movement
· At risk for falls; increase of Parkinsonism symptoms
· Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week)
· Needs assistance/supervision with most ADLs; may require DME
· Speech becomes impaired, projection (volume) may decrease
· Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language
· Able to be left unsupervised less than one hour but unable to work or drive
· Unable to administer medication without supervision
· Unable to organize or participate in leisure activities
· Inability to tell time or comprehend time passing
· Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome
· Severity of symptoms may increase or decrease

PHASE IV POSSIBILITIES
Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.
The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.
· Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair
· Needs assistance with all ADLs; requires 24-hour supervision
· Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel
· Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses
· Parkinson’s symptoms need regular medical monitoring
· Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling
· Increased daytime sleeping
· Hallucinations prevalent but less troublesome

PHASE V POSSIBILITIES
Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.
· Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning
· High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever
· Difficulty swallowing with possible decision for feeding tube necessary
· Muscle contractions - hands, legs, arms; lean to either side very pronounced
· May need nutritional supplements - Ensure/Boost/ Carnation Instant Breakfast
· Unable to follow simple commands; decreased or no language skills
· Constant delusions
· Fluctuations less frequent and more severe
May you find peace and comfort in knowing you are not alone.
Jan Colello

GLOSSARY OF ACRONYMS
ADL Activities of Daily Living - dressing/bathing/ feeding oneself
BP Blood Pressure
CG Caregiver
DME Durable Medical Equipment–wheel chair, shower chair
DPOA Durable Power of Attorney
LBD Lewy Body Dementia
LO Loved One
LW Living Will
MPOA Medical Power of Attorney
PCP Primary Care Physician
POA Power of Attorney
REM Rapid Eye Movement sleep disorder
URI Upper Respiratory Infection
UTI Urinary Tract Infection
WCh Wheelchair

neuroguy

Thanks so much for posting the possible phases. It truly helps as a suggestive guideline for what may come in the near future. It aids us in preparing both mentally and physically. Our greatest fear is the fear of the unknown.
Thanks again.

Thank you for posting about the possible phases of LBD. I have been searching for something like this since my fathers diagnoses. I too need something to prepare myself for the future. Knowledge is power as they say. Going about this blindly is more frightening than knowing what can be in store for us.
My brother keeps asking me what is coming next and I haven't had a clue. Thanks again for shedding some light on this subject.

Cathy

[quote="neuro guy"]Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. It is developed to assist newly diagnosed families with a framework to refer to. As one retired spouse has said, “To be forewarned is to be forearmed.”

The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to “ebb and flow” or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. In addition, patients that are “high-functioning” may also show symptoms of Phase III or IV. By no means will a patient display all the symptoms listed in any specific phase. Therefore, each phase is described with “possible” symptoms.

PHASE I POSSIBILITIES
Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny
· Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking)
· Increased daytime sleep - two+ hours
· Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems
· Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean)
· Chronic runny nose
· Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness
· Short-term memory loss but able to hide (mask) symptoms or engage in show time
· Mood: Fluctuations; depressed/anxious; paranoia; 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
Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase.
It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO.
Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
· Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance
· Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation
· Parkinson’s symptoms may be controlled with medication
· Increased difficulty in:
Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances
· May be able to administer own medications.
· Able to follow content of most conversations
· Able to be left unsupervised for two or more hours
· Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated

PHASE III POSSIBILITIES
Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care.
Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.
· Ambulation/transfers are impaired, needs assistance with some portion of movement
· At risk for falls; increase of Parkinsonism symptoms
· Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week)
· Needs assistance/supervision with most ADLs; may require DME
· Speech becomes impaired, projection (volume) may decrease
· Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language
· Able to be left unsupervised less than one hour but unable to work or drive
· Unable to administer medication without supervision
· Unable to organize or participate in leisure activities
· Inability to tell time or comprehend time passing
· Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome
· Severity of symptoms may increase or decrease

PHASE IV POSSIBILITIES
Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.
The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.
· Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair
· Needs assistance with all ADLs; requires 24-hour supervision
· Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel
· Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses
· Parkinson’s symptoms need regular medical monitoring
· Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling
· Increased daytime sleeping
· Hallucinations prevalent but less troublesome

PHASE V POSSIBILITIES
Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.
· Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning
· High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever
· Difficulty swallowing with possible decision for feeding tube necessary
· Muscle contractions - hands, legs, arms; lean to either side very pronounced
· May need nutritional supplements - Ensure/Boost/ Carnation Instant Breakfast
· Unable to follow simple commands; decreased or no language skills
· Constant delusions
· Fluctuations less frequent and more severe
May you find peace and comfort in knowing you are not alone.
Jan Colello

GLOSSARY OF ACRONYMS
ADL Activities of Daily Living - dressing/bathing/ feeding oneself
BP Blood Pressure
CG Caregiver
DME Durable Medical Equipment–wheel chair, shower chair
DPOA Durable Power of Attorney
LBD Lewy Body Dementia
LO Loved One
LW Living Will
MPOA Medical Power of Attorney
PCP Primary Care Physician
POA Power of Attorney
REM Rapid Eye Movement sleep disorder
URI Upper Respiratory Infection
UTI Urinary Tract Infection
WCh Wheelchair[/quote]



Scientific or not-- Thank you, thank you!!! from the bottom of my heart. Mom recently dx'd w/LBD (but only verbally: in writing on chart, it's "progressive dementia," and for those undertaking her care next, it's "Alzheimer's."

On 12/4/09 she was discharged from her assisted living facility after being there a year (starting to seriously decline in August). She has been at Johns Hopkins and her next step is a nursing home. We have been told that bringing her home with us is not recommended because our daughter is expecting a baby and needs to live with us for a few months. One nursing home turned us down on the basis of her records faxed before meeting her. We won't make that mistake again!

Anyway, Alzheimer's guys get the Stages (I learned there are seven (7)); so having this at least as a template makes searching for a good home nearby that my Mom would be comfortable in, possible.

Deborah -

Welcome to the Forum.

I sent you a private message yesterday. Do you know how to check those?

Could you please edit your post? You don't need to quote the entire post that you are replying to! Just say "dear neuroguy...." and everyone will know which post in the string you are referring to!

Thanks,
Robin