Does anyone know the stages of LBD or maybe a link to a site where I could find them listed?? I know they will be similar to AZ but yet since it is a unique disease I thought there might be differences??

Mariabee,
I keep trying to "move" my Mom back into earlier stages. I add up which ones are in which stage and then I can tell myself, "Well she has an equal number of moderate stage symtoms to later stage so she must still be moderate." Then too sometimes when I see her she seems to actually get what is going on around her and I think, "She can't be in late stage yet because she is mad at me that I won't give her cash again or won't take her shopping." Then I come another day and she is eating her paper napkin. So I agree with you, seeing it in writing is sad and sobering. But I actually feel better with some realistic ideas about what is going on then earlier when I was thinking, "Is Mom really diagnosed correctly?" Now I know. Its not fun. But I know. I recently revisited this web too because I needed to recopy these stages for my Mom's old boyfriend who is in total denial, visits Mom every day (which his new wife is not happy about) and wants my brother and I to fly her to Rochester, Mn to be tested for that magic medicine that will bring her back to herself. So I am giving him a copy and hoping if he sees some of these in writing - he will know too. Thanks Mariabee - it is nice to get feedback from someone else with an LBD family member.

Wow.

I've been purusing a few of the threads on LBD this morning and I happened upon this one again. Although I knew that my mom had entered the latest stages, at least to some degree; as I read the list in Stage V below, I realized that she really is fully in the very latest stages.

It's a sad and sobering thing to see it in writing.

I am doing ok with the stress . My mom is in the dementia unit of a nursing home. I am stressed for sure - but less so now that she is there instead of assisted living. I think the worst stress is just the unknown, "whats next" issue. And of course it won't be a good "whats next" but another step down the slope for her. I guess we all know that feeling. Thanks for caring and thanks again for the info!!!

Glad to be of help, Hannah!
I hope things are going well for you and your mom.

I also hope that while you are reading/scanning the LBD symptom document, that you are also paying attention to the little paragraphs preceding each of the phase's symptoms (the part regarding the caregiver).

As I progressed in our LBD journey, I always remained wholey consumed with my mother's condition. Then, one morning I woke up to discover that besides being depressed and chronically tired, I also had developed high blood pressure, rapid heart rate, and a nearly dead thyroid gland. Due to the thyroid problem, I had also developed all sorts of strange (bad) blood chemistries... I was really on an express train to disaster; all the while making excuses for how I felt--saying it was normal aging, stress, etc.

I'm doing all I can to correct these problems now. But so much could have been prevented if I had paid more attention to myself, and had gotten some help with mom sooner (still working on that one! ).

Anyway, take care, and let us know how you are doing.

maria

Thank you Thank you Mariabee!!!!!!

Hi Hannah,

The site Tory mentioned is a "group" at yahoo.com. In order to view this document you must join the group. There is a lot of good information there and there are a lot of very kind folks there, as well, who share their experiences--much as we do here on ECO.

But since I'm a member of the LBD Group I went over and fetched the document for ya. Here it is:

Please read the first three paragraphs carefully.

LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES
September 2006

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.

Again, this list of phases were put together by observations & discussions by caregivers, it is also a work in progress. We’re gearing up to work on the document again. Our goal is to tighten it up, pare it down, and make it more user-friendly. If anyone has suggestions on slimming it down, it would be greatly appreciated. Please email Sue at bomberblindwilliesudz @yahoo.com (no spaces) or Shirley at Shirleypen @aol.com (no spaces) with your comments or suggestions.



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
WC Wheelchair

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.
Symptoms and Subtle changes in:
* Increased daytime sleep - two+ hours
* Hallucinations
* REM sleep disorder
* Restless Leg Syndrome
* Sense of smell
* Vision
* Hearing Loss
* Speech
* Physical coordination
* Parkinson’s disease diagnosis
* Shuffling gait
* Slowness of movement
* Posture is altered
* Chronic runny nose
* Myoclonic jerks
* Comprehension
* Ability to learn new tasks
* Memory - short term
* Loss of initiative, interests
* Alertness
* Thinking/learning/ problem solving difficulties suggest dementia
* Mood - Depressed/Anxiety
* Fluctuations in mood
* Able to engage independently in leisure activities
* Handwriting is affected
* Impairments with financial responsibilities
* May be able to work
* May be able to hide (mask) symptoms
* Driving skills
* May accuse spouse of infidelity


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.
Symptoms are clearer:
* Ambulates/transfers without assistance
* Increased risk for falls/requires walker
* Occasional episodes of incontinence (1 or 2 a month)
* Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
* Leaning to one side
* Parkinson’s symptoms controlled with medication
* Able to perform most ADLs without assistance
* 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
* Capgrass Syndrome (seeing or thinking there are two persons or objects)
* Depressed mood
* Paranoia
* Agitation


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/transfer s are impaired, needs assistance with some portion of movement
* At risk for falls
* Increase of Parkinson’s symptoms
* Increase of autonomic dysfunctions
* Needs assistance/supervision with most ADLs. May require DME
* Frequent episodes of incontinence (two+ per week)
* Speech becomes impaired, projection (volume) may decrease
* Able to follow content of most simple/brief conversations or simple commands
* Able to be left unsupervised less than one hour
* Unable to work
* Unable to drive
* Unable to administer medication without supervision
* Unable to organize or participate in leisure activities
* Increased confusion
* Possible delusions & Capgrass Syndrome
* Inability to tell time or comprehend time passing
* Increased difficulty with expressive language
* Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring
* 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.
* Continuous assistance with ambulation/transfers
* High risk for falls
* Needs assistance with all ADLs
* 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
* Requires 24-hour supervision
* May need electronic lift recliner chair
* Parkinson’s symptoms need regular medical monitoring
* Autonomic dysfunctions need regular medical monitoring
* Choking, difficulty swallowing, 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.
* Difficulty swallowing
* Dependent for all ADLs
* High risk for URI, pneumonia, and UTI
* High risk for skin breakdown
* Patient requires hospital bed, Hoyer lift or Mo-lift, suction machine, etc.)
* Muscle contractions - hands, legs, arms
* Lean to either side very pronounced (sometimes called Lewy Lean)
* May carry a fever
* May need nutritional supplements - Ensure/Boost/ Carnation Instant Breakfast
* May require decision whether or not to use feeding tube
* Unable to follow simple commands or assist with repositioning
* Decreased or no language skills
* Constant delusions
* Fluctuations less frequent and more severe

quote:

Originally posted by Tory:
FYI - some LBD Caregivers came up with a list of phases for LBD. It's on the LBDCaregivers Yahoo Group board.
http://health.groups.yahoo.com/group/LBDcaregivers/join
It's not made by doctors, but by caregivers - so it's not a scientific document... just made by observations...

Tory,
I can't seem to get on this site and find this list. Is there any way you could copy the stages and post it?

FYI - some LBD Caregivers came up with a list of phases for LBD. It's on the LBDCaregivers Yahoo Group board.
http://health.groups.yahoo.com/group/LBDcaregivers/join

It's not made by doctors, but by caregivers - so it's not a scientific document... just made by observations...

Thanks for the sites! I had the first one but not the others. More information is never bad in this murky disease!!!!

Hi, Hannah. I am so sorry to hear that LBD is going to be one of your concerns. On the sunny side, however, the available information on this disease is becoming much easier to find than it had been during the past few years (BG has posted some good links for you)...and doctors are becoming more aware of it too, which is a huge plus!

quote:

I know they will be similar to AZ but yet since it is a unique disease I though there might be differences??

You're correct inthat there are very distinct differences between LBD and Alzheimer's Disease! Most of these differences are evident in the presentation of the patient, from very near the onset. Whereas early on, AD patients often become forgetful, exhibiting short-term memory deficits, and do some strange compensating things because of their memory problems; the person with Lewy Body dementia will more likely have vivid multi-modal hallucinations and delusions, will show some problems with gait and carriage of her body; will lose continence fairly early; will have a "flat affect" or inappropriate responses; and may be having more than a little trouble with tripping for reasons that do not appear obvious.

Very early on LBD patients seem to lose their ability to judge speed and distances, and to interpret visual stimulus (a line on the floor may look like a ledge, a mirror image may be percieved as another person in the room).

From what I have learned over the years, the only real similarities in "stages" between LBD and AD are at the very end, when the patient is bedridden and can do no self-care, can't turn herself or feed herself, etc.

In the interim, LBD patients have GOOD days and they have some bad ones. They have good weeks followed by bad weeks. Days of clear cognition and days of confusion and hallucinations with delusions. Over time, the good days are less frequent and the bad days seem more profound. But they are always sort of in flux.

The thing I think is the most prominent gage of the stages of decline has more to do with the physical symptoms than mental abilities. Not all patients exhibit "Parkinsonisms" but many do, and of those who do, some will have a more or less severe array of these symptoms.

For a good gage of decline due to Parkinsonian features of LBD, check out The Unified Parkinson Rating Scale

Keep a copy of it, and note changes in your loved-one's condition as they occur, including the date and frequency of the difficulty. This will be of immence help to your LO's doctor.

Along these lines (parkinson's features) you will want to be very careful of neuroleptic, or anti-psychotic drugs. They can induce severe reactions in LBD patients that can completely physically disable your LO---and can even cause death. Risperdal, Haldol, and some others are on the "No-No" list of drugs. Even something as innocuous as Benadryl has sent my mother to the hospital...so, be aware!

Also, as I posted a couple of days ago ( http://eldercare.infopop.cc/eve/forums/a/tpc/f/4006077151/m/2571063854 ), there is an excellent new book out on "Dementia with Lewy Bodies-and Parkinson's Disease Dementia". It is written by doctors, and FOR doctors. You loved-one's doctor will appreciate the information in this book, and it is not above your ability to understand either---so you'll love it too.

And there is one final book that I think is worth getting a copy of, "The Official Patient's Sourcebook on Dementia with Lewy Bodies" edited by, James N. Parker, M.D. and Philip M. Parker, Ph.D. ...it is what it says, however, a *sourcebook*. It does not contain tons of info on the disease, itself, but rather info on where to find help, case studies, clinical trials, etc.

Good luck to you, Hannah! Please let us know how you are doing.

maria

This message has been edited. Last edited by: mariabee,

Hannah heres a few sites for you hope this helps...
http://www.lewybodydementia.org/

http://www.helpguide.org/elder/lewy_body_disease.htm

http://www.lewybodyjournal.org/

http://www.ninds.nih.gov/disorders/dementiawithlewybodi...iawithlewybodies.htm