Stages of LBD and Lewy Update

Karen, (in the San Francisco Bay Area)
I found the “levels” of LBD text I mentioned. This was lifted from a forum conversation. There was no reference cited.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course ofaction.
6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7

Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present.
7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost

This second finding was complete from beginning to end stages

Dementia can be divided into seven stages which are similar to those in Alzheimer’s disease. The seven stages of dementia are as follows:

I. No impairment of normal function: No sign of memory loss are visible to a medical professional nor does the patient experience any symptoms.

II. Very mild cognitive decline: People may experience some loss of memory such forgetting familiar words, names, or location of wristwatch, eyeglasses or any such objects of daily use. Family, friends or colleagues may observe these signs.

III. Mild cognitive decline: Early stage dementia can be diagnosed only in some individuals with the following symptoms:
The patient has trouble remembering words or names.
The patient loses the ability to remember names of individuals newly introduced to him or her.
Difference in performance can be easily noticeable in work environment, social environment by family, friends or colleagues.
Less retention from articles or stories read in a magazine or book.
The patient misplaces or loses valuable objects.
Decreased ability to plan or organize.

IV. Moderate cognitive decline: It is a mild or early stage dementia with the following clear cut deficiencies being observed:
The patient fails recollect recent incidents or current events.
The patient cannot perform some challenging mental arithmetic such as counting backwards from say 100 by 7s.
The patient is not able to plan or organize complex tasks such as arranging a party, planning a picnic etc.,
The patient would remain socially withdrawn and silent in challenging situations.

V. Moderately severe cognitive decline: It is a moderate or mid-stage AD with major gaps in memory and deficits in cognitive function. Assistance with daily activities may be required and following deficiencies are observed:
The patient fails to recall current address, telephone number and name of the college or school from which they graduated.
The patient is in a confused state of mind with regards to their current location, date, day of the week, season etc.,
The patient fails to perform even lesser challenging mental arithmetic such as counting backwards from 40 by 4s.
The patient requires help in choosing the appropriate clothing for a particular season or occasion.
Generally, the patient retains substantial knowledge and can tell his or her own name, names of their spouse or children.
The patients do not require any assistance for eating or using toilet.

VI. Severe cognitive decline: It is the next to the last stage and is also called moderately severe or mid-stage of dementia with memory difficulties continuing to worsen, personality changes emerging substantially and the patients requiring a considerable amount of help for carrying out their day-to-day activities. The following symptoms are observed in the patients:
The patient loses track of some of the most recent experiences, events and even their surroundings. The patient cannot recall personal history exactly, though she/he can recall her or his name perfectly. The patient can distinguish familiar faces from unfamiliar faces.
The patient requires help to dress appropriately, since they tend to create errors such as wearing shoes on the wrong feet etc.,
The patient experiences a disturbance in normal sleep waking cycle.
The patient would require the help for handling details of toileting such as flushing toilet, wiping and proper disposal of tissue paper.
There are increasing episodes of urinary or fecal incontinence.
Changes in behavior including suspicion and delusions such as suspecting the care giver as an impostor, hallucinations, repetitive behavior such as hand wringing etc.,
The patient tends to wander and become lost.

VII. Very severe cognitive decline: It is the ultimate stage and is called Severe or late-stage with the patient losing the ability to respond to the environment, unable to communicate orally and unable to control movements.
Very often patients in this stage lose the ability to communicate in a recognizable speech though they utter phrases occasionally.
Patients need assistance in eating and toileting with “general incontinence of urine” (9).
Patients gradually lose the ability to walk without support, to sit, to smile and hold their head up. Muscles become rigid and reflexes abnormal with swallowing becoming impaired (9).

Article by Kona Vishnu, MS
Medical Writer

I thought since I found these I might pass them on. All this is probably old news to everyone but me and Karen in SF.

Daddy-Lewy is clearly in Stage 7. Now that I sit and read these, Lewy has been in Stage 6 for at least two years. The scariest part by this standard is; I’m in Stage 3!!

Daddy was hungry this morning and had a good meal and lots to drink. He was more or less with me, but in and out I’d say. At noon I feed him again and he was thirsty. By the end of the feeding he was twisting his sheet up into a tight knot again. He was straining so hard to wring it as tight as he could. He seemed afraid of something.

Now that I’ve decided the pain killers were killing his appetite, I didn’t want to give him any of that stuff, so I gave him a dose of the anti anxiety drug. After a few minutes he calmed down and began (I’m guessing here, to be honest) hallucinating. He was reaching up to the ceiling, first grabbing then pointing, and grabbing again. “They” were coming through the ceiling. A few minutes more and he was sleeping.

As the sun angle shifted into the windows beside Lewy, I could see that his eyes are now sunk back in his skull, and his once chubby face is now drawn upward like Popeye’s and his cheeks sink in making his skin look tight.
When he looks at me, mostly it is a puzzled expression I see. I think he is forgetting who I am more often. In fact maybe most of the time would be closer. I stood over him slighting leaning on his bed rail. I watched his eyes for some bit of contact. He finally after about a minute found my eyes, paused and said “Audrey?”

“No, it’s me Pauline.” Now I wonder if in his confusion he’s thinking he just called his wife by his latest girlfriends name….doubtful. I don’t think he could get that complex, but he sure did get that OH SHIT!! look.

For me, I’m pissed that he thinks I look 80.

3rd Wife said...
I wasn't going to make a comment about the different stages for fear that it would sound like I'm making light of the situation. But, since Pauline said it first....I feel like I'm somewhere between Stage 3 and Stage 4 already!

Pauline, it's supposed to be a beautiful day. Hopefully you can get outside for a bit and enjoy it!

kddove said...
stages 3 and 4 sound a lot like me, it seems like my whole life! especially the parts about not completing doctor just put me on ADD medicine, now i can't STOP doing what i begin....

pearose said...
Hi Pauline! I know it's Hospice day for Lewy, so maybe you will get a chance to spend much of the day in this gorgeous weather. This weather will zap some stress away.

Maybe the sunshine will have a relaxing effect on Lewy, too!