Expert: Mary Gordon - 12/9/2005

Question
Hi,

Mom was diagnosed with moderate stage Alzheimer's 2 and 1/2 years ago (I had to put her in a nursing home at that time) and her memory is getting worse and her personality has changed in many ways.  I would like to know if you found it common that from time time she reverts back to a personality where she remembers and seems more like herself.  She eventually forgets again but I find this very upsetting because it's starting all over again that I have to explain to her why she is there, etc.  I have many sleepless nights due to the stress of the whole situation until she forgets again and I feel guilty that I would like her to forget.

Any help is appreciated.

Helen Adair

Answer
Hi Helen,

You don't mention how she was diagnosed, but it may well be that she has another progressive dementia other than Alzheimer's or another type at the same time.

People with Alzheimer's can have fluctuations in cognition, and be more "with it" some days than others. Many people notice that their loved ones seem better when they are well rested, fed and relaxed, and that any stress at all, including minor colds or upsets can set them back mentally. This is why some Alzheimer's patients "sundown" and seem worse at the end of the day when they are tired, things are darker, and there is a lot of confusing activity around dinner, evening clean up and prep for bed.

I know how upsetting suddenly having them come around and seem like themselves can be. I recall my mother in law asking about her sister, and being reminded that she had died. Although my mother in law had been at the hospital AND at funeral, she didn't recall anything about it. It was like brand new information - she started to cry about her sister and got it into her head that we had excluded her from the funeral. It was very upseeting for all of us.

Later in her illness, when she had completely lost intelligible speech  she was looking at a photo album and suddenly pointed out my father in a group shot and said "Oh, look, there is Mary's father. Doesn't he look nice." We just about fell on the floor. This from a woman who not only couldn't normally speak other than garble syllables, but who didn't recognize pictures of her own husband, and had forgotten she'd been married.

Having said that, I think what you describe is beyond the normal fluctuation expected with Alzheimer's. I'm wondering if she might have actually had Lewy Body Dementia. Not that in the end, the final diagnosis makes any difference - both are relentless, incurable, progressive dementias. However, one of the hallmarks of Lewy Body Dementia is very dramatic fluctuations. Sometimes it does help to know if the person has a type of progressive dementia other than AD, just because it may follow a slightly different pattern in terms of behaviours and progression. You might want to ask her doctor if he or she thinks she might have Lewy Body dementia. Not that there is anything that can be done to change things, but it might make you feel better and help you to anticipate and understand some of her behaviours.

Below my signature, I've pasted the stages of Alzheimer's, which are fairly applicable to most forms of progressive dementia, just to give you a feel for where she may be.

Hope this helps - I know how hard this is. You love her, and you want the best for her, and it hurts to see her in distress and not be able to help her.

Thinking of you.

Mary Gordon
Toronto

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 withdrawal 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., 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