Expert: Mary Gordon - 9/9/2009

Question
Hello Mary. My sister and I are seeking information regarding a diagnosis that we recently received regarding our mother. She was recently taken in to have a CAT scan done which has now revealed "brain shrinkage". We took her in for the scan because we noticed that her memory has been worsening, and there have been fits of anger and even some physical violence. We have all been aware of her decreasing memory and her history of stroke and bypass surgeries have all been acknowleged. Our mother lives with my sister, Terry, and like you, she is the ham in the sandwich. So whatever info and advise you can offer will be gratefully appreciated.

My mother is set to see her doctor for a follow up and to discuss the readings of the CAT scan.
Can you offer any sights we can research in the mean time? Maybe even offer up questions that we should be proposing to her doctor?
Thank you for your contributions and God Bless!
Jodie and Terry Goode

Answer
Hi Jodie and Terry,

You are doing the right thing getting her assessed and diagnosed. As you can appreciate, there are many conditions that can affect cognition, particularly in the elderly who so often have a constellation of complicated health problems.

Some limited shrinkage is a normal part of aging, but if it has been flagged, it likely means the degree of shrinkage that is strongly associated with progressive dementias.

Dementia is just a term that describes symptoms - so it's a word like "fever". It tells you what is happening but not why.  It doesn't tell you what the underlying CAUSE is, which is what the doctors will now be pursuing. You need a proper diagnosis to be able to determine what, if anything can be done to help her. A proper diagnosis also will give you some notion of what to expect going forward, so you can make good plans for her care. There are some causes of dementia that can be treated and even halted or reversed, such as those from B12 deficiency, or from normal pressure hydrocephalus. There are some dementias that can be slowed down somewhat with medications. No matter what, you need to know the underlying reason for what you are observing.   

The two most common causes of dementia are Alzheimer's and multi-infarct. Multi-infarct is sometimes called vascular dementia and it is from mini-strokes and blockages. These are often so small they show no symptoms other than steadily declining cognition. The damage to the brain accumulates over time. If your mom has a history of cardiovascular problems and strokes, this may be part of what is going on. It is also entirely possible to have more than once cause of dementia happening at once (i.e. Alzheimer's AND multi-infarct).

Common early signs of trouble brewing on the cognitive front are memory loss, trouble performing familiar tasks, problems with language, disorientation to time or place, poor or decreased judgement, problems with abstract thinking, misplacing things, changes in mood and behavior, personality changes, and loss of initiative.

From the little you describe, sounds like you are certainly seeing a few items on this list. When the doctors get through more of the medical screening, I would ask for a comprehensive assessment of her cognitive abilities. We had my mother in law assessed like this - it's similar to what they put a child through looking for learning disabilities.

It was very useful to us - and totally shocking. She was impaired on many fronts that were not apparent to us. We had thought it was mostly memory issues, but the testing revealed many more problems. Although it was very upsetting to us, at least it got us totally out of denial, and it gave us a much more realistic idea of what she could and couldn't do. Realistic expectations are key to helping the person, and keeping them safe - and it is also so important so you don't get frustrated with the person. Quite often, it appears that the person is being deliberately stubborn or annoying - or even hurtful - and the truth is they really can't do some simple task at all any more.

Don't be fooled by the ability to carry on a good social conversation. My mother in law could talk your leg off in a social situation or on the phone. None of her friends and many family members thought there was a darned thing wrong with her - and didn't realize she couldn't handle money, dress herself properly, keep her apartment clean etc. etc. We had a lot of trouble as a consequence with friends and family who thought we were being mean to her by insisting she have a housekeeper etc. They just had no clue how much trouble she was really in, and how bad some of the safety and hygiene issues had gotten.

Sounds like you or your sister has your mother's approval to sit in on the discussion with the doctor, and that is a terrific idea. If she is having memory or emotional issues, she may or may not really understand what she is told, or recall important details later.

You mentioned that she has had a CT scan. Computed tomography (CT) scanuses multiple X-rays taken from different angles. These images are then fed into a computer, which creates a series of cross-sectional "slices" of the body. CT scans often can reveal certain changes that are strongly suggestive of dementia, such as atrophy or shrinkage, widened indentations in the tissues, and enlargement of the fluid-filled chambers called cerebral ventricles. Another test that is often used is MRI (magnetic resonance imaging). These produce very clear images using a large magnet, radio waves, and a computer. They are very sensitive at imaging "soft tissues" so they can be used to rule out some causes of dementia, such as tumors or strokes. MRIs can also show atrophy.

I know you are just in the exploration stage, but as soon as you have some idea what is going on, I would very strongly urge you to seek out a lawyer who specializes in estate planning. If you are in the US, and facing the morass of private and public insurance issues, you need help to navigate choppy water. You want to be able to protect her assets for her future care, and preplanning does help. Rules vary from place to place, and expert advice is well worth it. You also want to make sure her affairs are in order - by that I mean not just wills, but powers of attorney for both financial and health care decisions. If she does have a progressive dementia, she may not be well enough to sign papers in short order, and you need to be able to look after her affairs to protect her.

I don't want to overwhelm you with information, so I'll stop here. She is so lucky to have the two of you concerned and involved. Below my signature, I've pasted the most commonly used set of "stages" for describing cognitive impairment from a progressive dementia. I'm thinking she's a 3 or even early 4 just from your brief description.  

Hope this helps. Come back with any questions you have. I'm happy to help.

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 dementia. 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., 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