Expert: Mary Gordon - 10/24/2006

Question
My grandmother is 91 years old.  She was diagnosed with AD several years ago and is taking medicine for it which has seemed to help with the symptoms.  However, her gait has become increasingly unsteady and has recently started to become confused.  My mother in law is a nurse, and has felt that she has had NPH for some time.  We all got together last weekend, and she again expressed her opinion that my grandmother might have NPH.  However, at her age, I am wondering if it would make much of a difference whether she was diagnosed or not.

In addition to falling frequently, she has also started sleeping almost 20 hours a day, and does not enjoy getting out and seeing people any more.  She complains of being in constant pain in her back, but the doctors offer little in the way of relief.  She has a history of gastrointestinal bleeds, and is not able to take NSAIDs.  She does not tolerate Tylenol well, either.  It causes dizziness.  

Would it improve her quality of life enough to put her through all the tests necessary to diagnose this?  I love her very much, but I don't want to make her suffer needlessly.

Thanks for your opinion.

Answer
Hi DeAnna.

While it is true that dementia and gait disturbances can be caused by NPH, what has gone on with your mother in law is not typical of NPH if she is only now developing the gait problems, years after her cognitive issues began to emerge. With NPH, gait problems usually show up early (i.e. up front). The triad of symptoms for NPH are dementia, gait disturbances and urinary incontinence - but AD will also eventually cause all three. Its also possible to have AD AND other causes of dementia and gait problems like NPH or Parkinsons or mini-strokes at the same time.

I would tend to agree with you regarding both tests and treatment at this stage of her life. Here is a description of what both involve.
http://www.lifenph.com/content/diagnosis.htm

It would seem to me that you would not be doing her a kindness to put her through what will be confusing and possibly painful tests.  General anesthesia can be really detrimental to a person with a dementia - and for a frail 91 year old... I'm not sure what there is to be gained at this point. It should be pointed out that even if it was NPH (which I doubt) she may not even be a candidate for a shunt as a frail 91 year old.  If she was 70 it might be a different story. Right now, you really do want to consider what is to be gained in terms of a more comfortable life for her. Her lifespan is very limited no matter what you do or don't do - that is reality.

Many people don't realize that AD itself causes loss of muscular coordination, balance problems, perception issues, delayed reaction times - all those things that cause a person to be very unsteady on their feet. Eventually, it is normal as the illness progresses for the person to lose their ability to walk. That's what happened to my mother in law a full two years before she died.

Below my signature I've pasted the stages of AD for your reference.  Whoever in your family holds her powers of attorney might want to have a discussion with the neurologist who diagnosed her to find out what the original investigations involved. It may be that her symptoms in the earlier stages of her illness were much more typical of AD than NPH.

Hope this helps

Mary G.   


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, 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