Expert: Mary Gordon - 10/21/2005

Question
Mary, AD has been very prevalent in my mother's family. She had several aunts and uncles die of AD. She is 72 yrs old and has been experiencing symptoms that can also be attributed to aging. She has always been independent and does not really act as we would expect most people of her age to act. That's why we are concerned, and she is very frustrated, with symptoms she's experienced this past 1-2 yrs. She is having a lot of problem with memory, especially short-term. She also becomes confused with many simple daily activities. The symptoms aren't advanced enough for doctors to show any concern, but we are very concerned. Is there a test or clinical trial she can get involved in  to possibly get some answers? Every trial we hear of (or read about online) says she has to be in an advanced stage or at the very least have a caregiver. She does not need a caregiver, but we're concerned NOW. She lives in Houston, Texas. Any help or direction you can give is appreciated.

Answer
Hi Ed

You are absolutely right to be concerned and your mother's doctors should not be dismissing this. If the warning gongs are going off in your gut, I'd listen to them.

The thing is, in my opinion, it's medically irresponsible for doctors not to investigate. If she was 50, they would be much more aggressive about determining exactly what is going on, and what can be done about it.

Alzheimer's IS one of the most common causes of cognitive impairment in the elderly, but it is by no means the ONLY cause. There are a wide range of medical issues that can contribute to memory problems and confusion, and many of them are treatable - examples include thyroid problems, small strokes (which can be so small there are no symptoms we think of as stroke related), pernicious anemia, drug interactions and side effects, "normal pressure" hydrocephalis, depression and a host of other things. At the very least, if she does have some progressive form of impairment, its completely worth investigating because there may be options to slow things down, and preserve her quality of life longer. Diagnosis does matter, and the sooner, the better. Knowing exactly what is going on can also make it much easier on everyone in terms of being able to anticipate what might happen next in terms of problems and behaviours, what kinds of plans need to be made, financial and legal arrangements that should not be put off etc.

Alzheimer's is only diagnosed by ruling out everything else it might be.  So, the first step is to make sure your mom isn't suffering from some other problem that might affect her memory. A good assessment includes a full physical with assorted blood tests, some psychiatric evaluation to rule out depression, a review of history and medications, a neurological work up, usually including a CAT or other brain scan to rule out strokes, tumors etc.

The most common drill is for the family doctor to start the work up and some quick cognitive screening such as the MMSE (here's a url so you can see what this involves)
http://www.medafile.com/mmsex.htm and then to refer her to a specialist - usually a neurologist or psychiatrist with a specialty in geriatric dementias.

A good assessment will also check out the extent of your mother's deficits.  Alzheimer's doesn't just affect memory. Because it affects the entire brain, reasoning, judgement and personality can be affected early in the disease. Things families notice first often include memory lapses, trouble with numbers or time, getting disoriented in familiar places (i.e. getting "turned around" on the way to the store), trouble thinking of words, asking the same question repeatedly,  getting upset easily or frustrated, changes in routine (i.e. they sometimes stop participating in things they previously loved), difficulty solving simple problems (i.e. not being able to figure out what to do when something goes wrong).

When my mother in law was diagnosed, she was sent for some careful testing by a psychomatrist - the kind of testing you would put a child through looking for learning disabilities. The results were very shocking to us and shook us right out of complacency and denial. At the time, if you had met her, you would have thought she was fine, maybe just a little forgetful - but the testing showed much more extensive and insidious brain impairment on a range of fronts than we would ever, ever have guessed.

Memory loss is always caused by something - it is never a normal part of aging, or something we should accept without proper exploration. Tell her doctor what you are seeing and get him or her to find out what is going on.

If she does have Alzheimer's, drugs like aricept (donepezil, or namenda (memantine) - often used in combination - can really help slow down the illness, and buy her more time when she needs it most - when she is still herself and has the most to lose. Although the combination is used for more advanced AD, many doctors use it on patients earlier in the disease.

Below my signature I've pasted the most commonly used definitions for the stages of Alzheimers just for your reference. Just from your brief description, sounds like she might fall into Stage 3 already.

Hope this helps - get on the phone and give her doctor a good shake - there IS reason for concern.

Thinking of you. If I haven't answered your question well enough, or there is anything else I can help with, give me a shout.

Mary Gordon
Toronto

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, 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 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