Expert: Mary Gordon - 2/9/2005

Question
My grandmother has just been diagnosed with "early stage" Alzheimer's by her internal medicine specialist.  Her doctor sees her for 7-8 minutes a month for treatment of congestive heart failure and, up until last week, had not even paid attention to notes in my grandmother's file reguarding my mother's numerous telephone calls voicing her concerns.  We are now waiting to see a neurologist and have a CT scan, but we're already having concerns that my grandmother may not be "early stage".  Have you had any experiences with "sundowning" and hallucinations?  

Thank You,
Mary Katherine Gordon  

Answer
Hi Mary Katherine Gordon ! We share the same name, but I'm a Mary-Elizabeth.  

Sundowning and hallucinations are NOT early stage issues, so the very fact you are asking me about them suggests strongly to me your grandmother is further along in the illness than early stages. Below my signature, I've pasted the most commonly used definitions for the stages, so you can read them and get a feel for where she is in the illness. My guess is to look seriously at beyond stage 4 of 7.

Incidentally, if she is having vivid hallucinations and her abilities fluctuate widely, she may have a form of progressive dementia other than Alzheimer's, such as Lewy Body Dementia. The neurologist will be able to assist in figuring out if she has Alzheimer's or one of the many others. So, you are doing the right thing, since a proper diagnosis is the first thing on the agenda.  

Sometimes people with Alzheimer's and other dementias will have delusions - ideas that seem crazy to you, but make sense to them, as their poor injured brains try desperately to make sense out of sensory information that they really can't process properly. They make interpretations that make no sense to someone with an intact mind. For example, my mother in law was completely convinced that people on TV could see and hear her, and no amount of arguing would convince her otherwise.

Sundowning is a common phenomenon in people with dementia. Like anyone, they are at their best when they are fully rested, relaxed, and in a well lit area. People in mid and later AD  are really just hanging on by their finger nails. They don't just have memory issues. Their brains are being dismantled neuron by neuron so their judgement is impaired, their ability to reason, their emotional control, and their perceptions (i.e. ability to interpret what they see, including depth perception). On top of that, their internal clock is often disrupted so they are confused about night and day.

Now imagine a person like that in the evening. They are tired, so immediately not at their best. The house may be full of evening bustle cleaning up from dinner, and getting ready for bed, lots of domestic coming and going which can be confusing and stressful for them. Light levels are low.
The whole thing can become too much for them. Sometimes, they will get so stressed that they become very upset, agitated or restless. It is depressingly common. Here are some tips on dealing with it.

http://www.alz-nca.org/caretips/sundown.asp

I would very strongly recommend you purchase a copy of a book called the 36 Hour Day, by Mace and Rabin, published by Warner. Its available in paperback, and it is the caregivers bible. Its full of helpful information on dementia, typical behaviours, tips and hints for coping with them etc.

If I have not answered your questions fully, get back to me with more details about what you are seeing her do.

Go to the neurologists visit primed with questions. I'd also recommend besides diagnostic tests like a CT scan, you ask for an assessment of her abilities - its kind of like the testing you do on a child looking for learning disabilities. We found the results of a cognitive assessment really shocking when one was done on my mother in law, but it was so helpful, since we were confronted with solid evidence that she was MUCH more impaired than we had understood since she could carry on a very good social conversation, and fooled almost everyone. Knowing how impaired she was on so many fronts, helped us move into a more realistic understanding of her limitations, and also helped us with our expectations of her. It was much less frustrating to deal with her when we really know she couldn't do certain things no matter how she tried (i.e. none of it was deliberate, and it wasn't anything to do with being stubborn, annoying, difficult etc.) She really was doing the best she could with what her brain would allow her to do.

I'll keep my fingers crossed for you that the neurologist is helpful and supportive, and gets your family the information you need.  

Mary-Elizabeth Gordon
Toronto

Stages of Alzheimer's
In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of Alzheimer's disease. Even today, when experts refer to a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's 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 or Early AD). 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 ability to remember  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 or Mild AD). 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 occurs.

Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). 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 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 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 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