Expert: Mary Gordon - 1/28/2011

Question
Dear Mary,

I have a question about the different stages of Lewy Body Dementia.  A while back, you answered a question and printed the last two stages of LBD, stages 6 and 7.   I found that information very helpful.   Is it possible to print or send me a link to where I can read about the first 5 stages?   My father was diagnosed with Lewy Body Dementia about 2 years ago.   I don't think that he is in stage 6 yet, but I  would like some guidelines so my mom, my sister and I can prepare for what is coming next.  

Here's a little bit of information about my father's present condition.  He is 78 years old.  He has vivid hallucinations that occur at night and during the day.  He is on medication for the hallucinations.   The medicine seems to help to some degree.  His long term memory and speech is relatively intact.  He does have difficulty understanding simple things and dates and times.   He also has difficulty understanding what is being said on TV.  He cannot follow a movie or TV show and is often very confused.   He use to like to watch football, but has recently declared that they changed the rules of the game, that players are running the wrong direction, that other people are on the field.etc.  His body is in pretty poor shape.  His head is almost completely horizontal, facing down, and he has difficultly lifting it more than a few  degrees.   He is, however, still able to eat, although with difficulty, and drink, out of a straw or large mouth cup.  He is extremely stiff and has difficulty getting up, sitting down, and walking.   Most days, he does not leave the house.  He needs assistance in dressing, but is able to go to the bathroom by himself, although with somewhat frequent accidents, and shower by himself.   He spends most of the day, sitting and dozing in his chair or sleeping in bed.   He attempts to read, but cannot read more than a few pages at a time.  I'm not sure to what extent he can understand what he is reading anyway.    He goes to the library maybe every 2 or 3 weeks, and often checks out books that he has already read.   

My mom is the sole caretaker.  She is also 78 and in pretty good health.  However, taking care of my dad is quite a burden for my mom to do it alone.  Unfortunately, my parents live in Hawaii.  I live in Los Angeles with my own family to take care of, and my sister lives in New York.   My sister and I alternate trips to come to Hawaii every couple of months to help out my mom.   My parents are not well off, and cannot afford to have someone come to the house to help out.  My mom says that she will do it until she cannot.  I worry that the burden of taking care my dad, who is not always the nicest or most appreciative, will take its toll on my mom and wear her out physically, mentally, emotionally and spiritually.  At some point, I know that as the disease progresses, she will have no choice but to get outside help.  Any information or advice you have would be greatly appreciated.  

Best,
Sean Fawcett

Answer
Hi Sean, I'm so sorry your poor father is going through this.

Here is some good general information on this illness
http://www.lbda.org/category/3431/learn-about-lbd.htm
http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=113

Although it is a different disease process than Alzheimer's, they both end up in the same place - both are relentlessly progressive, incurable and terminal illnesses that cause irreversible brain damage.

Lewy Body does have somewhat unique facets in the fluctuations and the hallucinations, and the Parkinson's features, but on the whole, as the brain damage progresses, all the major dementias follow the same general pattern of deterioration. You will need patience with the fluctuations because they can be very dramatic, and you may be confused by them, or be tempted to think he's doing it on purpose (i.e. he will be able to do something perfectly well one day, and then later the same day or the next day not be able to do it at all - and then the next day, suddenly be able to do it just fine.

You have seen the Functional Assessment Staging Tool (referred to as the FAST scale). It was originally created to describe the stages of Alzheimer's, but it is used for all the major progressive dementias because it gives doctors and caregivers a good way to describe a person's functional abilities so everyone can understand where a person is in their illness. It also is very helpful in that it gives everyone an idea of what is likely to happen next as the cognitive impairment proceeds. When you look at it, you see as things progress, the person's abilities are dismantled pretty much in the order they were acquired - so it is like moving backwards through development, back to a helpless and oblivious infant.

I've pasted it below my signature for your reference per your request, so you can get an idea of where your father is, and what is likely to come. People rarely fit perfectly neatly into a category  - not just because everyone is different, but because other health problems can complicate things.  The scale is about the general trends.

You are probably aware that your father's Lewy Body illness will make him acutely sensitive to certain drugs (neuroleptics) that are commonly used to treat behavioral and mood problems in dementia patients. Your mom has to make all doctors aware of what he has, because if they prescribe any of these drugs, it will make him a lot worse, and can be quite dangerous.

If you have not already done so, I would make sure your mother has consulted a good estate planning lawyer to make sure all the legal paperwork and planning is order to protect their assets against the day he may need very expensive care. It is crucial that she understand with a lawyer's help the rules for medicaid and medicare where she is. Is he a veteran? She will not be able to look after him to the end, as it becomes completely relentless, 24/7 without a minute off, and involves very heavy physical care, which is doubly difficult in that he will be much larger and heavier than her. I'd also double check that you or your sister have valid powers of attorney for BOTH of them, for both financial and health care decisions. l

Further, I would also start researching community supports, services and facilities as she will need help with his care - she, and other family need to know what all the options are, even if she doesn't want to think about needing any of it. That day is coming much sooner than later, so be a pessimist and plan for worst case. Then, if you don't need the contingency plan as soon as feared, you can be pleasantly surprised and relieved. If you don't have clearly thought out and well researched options, when something happens (and you can count on something happening), you will all be plunged into a sudden and very stressful crisis - you will scramble for solutions and you will end up having to take what is available rather than what might be optimal.

In terms of geography, you and your sister and mom need to have a conversation. She is not young, and I know you know things can change in a heartbeat. Is there a contingency plan in the event she becomes ill, even a relatively short term illness? Is there a possibility of them relocating to be closer to family supports? Is her current dwelling well adapted to caregiving and disability ? If not, even if she doesn't want to move closer to you, she may need to consider renovations or a move to dwelling that will help her cope with his care. After all, if she ends up struggling or stressed to the point of illness, she will not be able to cope. This will not be like a sprint - this will be a marathon, and anything you can do to get help arranged for her will be good for everyone.

Here is a good article about the experience of dementia. Although it mentions Alzheimer's, it really covers all the degenerative dementias - it will give you some good insights into memory and other aspects of what is happening to your father as his brain damage progresses. It also helps you to get a feel for what the experience may be like for him, and how to deal with his behaviors in a positive manner. Ignore the word Alzheimer's and think dementia in general as you read it.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Hope this helps. I know how distressing this is. I'm thinking of you.

Mary

FAST Scale
n 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of progressive dementia. Even today, years later, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's FAST scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982

Level 1

No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.

Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well.
No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.

Level 3
Mild cognitive decline (early confusional). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms. Deficits noticed in demanding employment situations.

Level 4
Moderate cognitive decline (Late Confusional). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events;
(b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions;
(d) decreased ability to travel, handle finances, etc.

Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations occur.

Level 5
Moderately severe cognitive decline (Early Dementia). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6
Severe cognitive decline (Middle Dementia). 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 orient in 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 of
action.

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). 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