Expert: Mary Gordon - 1/18/2004

Question
Hi Mary,
My best friend was diagnosed with AD three years ago and I'm now seeing a major decline in her ablilities.  She was recently seen by her doctor who informed her husband that she had gone from an 18 to an 11.  I understand that the lower the number, the more serious the symptoms are.

Can you tell me anything about this number scale?  I know you can't tell me at what point my friend will have to be hospitalized, but could you tell me what number is at the top and bottom of the scale? (Or where I can find this information?)

Sincerely,
Edie Hanes

Answer
Hi Edie -

There are a number of scoring systems used for evaluation of cognitive abilities, but the most common is called the MMSE
Here is some information on how the test gets used.

http://www.alzheimers.org.uk/How_is_dementia_diagnosed/Diagnosis_process/info_mm...

I know its heartbreaking to watch, but your friend is actually fortunate if she's stayed relatively stable up to now with reasonable quality of life. Alzheimer's progress can seem to fluctuate with time, and sometimes a person will seem to plateau for long periods and then have a big slide. As you probably know, Alzheimers is not just a memory disease - it causes global brain damage, so as time goes on, reasoning, judgement, personality, perception, muscular coordination - every aspect of their cognitive and physical functioning is affected.   

It isn't scientific, but all of us have lots of excess capacity in our nervous systems - and my observation with my mother in law was that she would seem to be doing fine for a long period, while what was probably happening was that slowly and insidiously that capacity was being eroded, to the point where she was just holding on by a thread - and when that last pathway or neuron winked out, she would suddenly lose a major ability. For example, she lost her ability to speak intelligibly over a two week period - before that, even though she was  late stage, no problem - after that, nothing but nonsense and garble, with the very occasional word or phrase that was understandable. It was quite unexpected.  

The other thing to keep in mind is that the ability to carry on a social conversation can be retained quite long into the illness so your friend may have seemed much better than she was, or been very good at hiding her deficits.  I know with my mother in law, many of her friends and several family members who had social contact with her found it hard to believe there was much wrong with her, very far into the illness (and were mad at us for insisting on a housekeeper and other supports). She seemed the same as usual - but then, they didn't see her struggling with every day things like bathing and dressing, the bills or the appliances.  

The slow and inexorable decline might have been more apparent to a professional. After all, we don't often grill our friends and loved ones regarding recent events, or make them do mental gymnastics. We also assume that people we have known for a long time can still do everyday things - I can still remember the first time I realized that my mother in law could no longer read a calendar at all. I was floored. If you showed her the calendar, she could read the numbers and the days, but if you showed her today and asked her to show you where tomorrow or a week today was, she had no clue at all, and could not understand the sequence of the days, months or numbers of the dates - and this when she could have had lunch with you and seemed totally herself.

I've pasted the most commonly used set of stages of Alzheimer's below my signature (sometimes referred to as the FAST scale) - this is not scoring, but gives you an idea of how the disease progresses. As you can see by the descriptions, its a dreadful road for everyone involved.

When it comes to requiring institutional care, a lot depends on the circumstances. If the person lives alone, you likely have to think about a care facility earlier than if they are living with other family members. For example, my widowed mother in law lived in her own apartment. We arranged a daily housekeeper, a visiting social worker, meals on wheels, a physiotherapist who came to the house, plus we were over there many times a week (my husband was an only child and we had three young children at the time).  We also had a person helping with her finances (keeping the accounts straight, doing the taxes etc.) By the time she was moving into Stage 4 (see below), we had to start thinking about moving her. Even with all that help, there were major safety issues. She was getting lost, letting people into her apartment, couldn't be trusted with appliances like the stove, no longer knew what to do in an emergency....so she needed 24 hour supervision and support seven days a week and we weren't able to supply that.

Many families cope quite well into Stage 5 - but you do start to get into harder physical care - the person needs help with dressing, bathing etc. You also can't leave them alone for a minute, and that gets to be very hard on people (i.e. many caregivers find they can't get anything done, have no life other than caregiving etc.) The "catastrophic" reactions at this stage can sometimes put an end to someone being at home. One set of family friends had to put their father in a home because he was a very big man and he began to hit when he was frustrated - and it just wasn't safe for the caregivers like their tiny frail mother. When they get to that stage, they can be like a toddler and not realize that they can hurt anyone.

Certainly by Stage 6, most families are seriously thinking about a care facility - especially if the person starts to need assistance with eating and toileting, or even becomes incontinent.  Night time wandering and other sleep disturbances can mean 24 hour duty. Taking care of someone at that point can be physically difficult, gruelling and thankless (i.e. the person with AD may not know you, recognize your efforts or be able to talk etc.) - and I've seen caregivers almost put themselves in the grave trying to cope.

Only your friend's family will be able to answer the question about when things reach the point where they consider a care facility - and that may be in a year or two or longer - since there isn't any way to predict how fast this illness will progress in a particular person. The first and overriding factor has to be the safety of the AD sufferer. They can't let guilt or denial cloud your judgement, painful as it is.  If the person with AD is not safe, loved ones have to take action regardless of the wishes of the AD sufferer. The second factor has to be the ability of those close to the person to cope.  Much as they love or respect the person with AD, they have to consider at what point caregiving becomes too much for the rest of the family - if they just can't do it adequately, if they are getting overworked, overstressed, distraught, can't get the supports they need etc. There has to be a balance there - and no one wins a prize if a total focus on caregiving for one family member means the neglect of others who need them, the sacrifice of the caregivers physical or mental health, loss of their livelihood etc.  

A good plan of attack is to get the ducks in a row long before anyone is thinking about a care facility. Lots of people don't do this because they just don't want to believe the day will ever come, or just can't face the possibility.  The thing with AD is that the situation can change quickly and unpredictably, depending on how the disease progresses, so everyone involves needs to be ready for almost anything (i.e. plan for worst case). They need to do your homework and find out what all the options are locally, and then get the loved ones name on whatever waiting lists there might be (good places often have surprisingly long lists). I felt very guilty about putting my mother in law on a list early in the illness, but we were later very glad we had done that, as just when she got to the point where we were starting to get desperate, a spot came up for her. It is always terrible to wait until there is a crisis - choices may be limited at that point, and everyone will be upset (i.e. they might have to take what they can get rather than what they really want or think is best).

Your friend is lucky to have you in her life. Hope this helps.

Mary Gordon
Toronto
(see below for the stages of Alzheimers)

Stages of Alzheimers

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, twenty one years later, 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 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 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 withdrawl from challenging situations occur.

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 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., paatients 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