Expert: Mary Gordon - 4/1/2009

Question
My father suffered 13 small strokes last year that started the process of dementia, according to the doctors.  He recovered and the symptoms stopped.  My mother suffered a fall and some broken bones and has been in rehab. Since this has happened, he seems to be forgetting recent events, talking very unrealistically about plans (for example: when she gets home he will put her in a chair and not let her walk so she won't get hurt again), getting angry and accusing family members of trying to take his money when they try to help him pay for medical expenses, etc.  He has also mentioned not being here in four months which is how long she is projected to take to recover.  I am worried that he may try to hurt her and/or himself when she comes home if he feels there is no hope for her recovery.  What should I do?  His family doctor is NO help.  She only appeases him and sends him home.  Is this behavior common with dementia?  Or could this be more like manic depressive or bi-polar?  What kind of doctor should we see?

Answer
Hi Stacy,

Two things - first is to get yourself a copy of the 36 Hour Day by Mace and Rabin. It's in paperback and it is a terrific book for helping you to understand and deal with the behaviors that go with dementia. Here is a link to Amazon to show you the book
http://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/0801885094/ref=...

Second is to ask the primary care doctor for a referral to a neurologist or psychiatrist with a dementia specialty. You and the rest of your family are going to need supports and information, and it sounds like the family physician just isn't up to the task. A specialist can also assist you with the psychiatric problems that go with many dementias, such as paranoia, agitation and anxiety, delusions, depression etc. There are medications that can help the person feel calmer and more comfortable.

If you haven't already done so, you need to see a lawyer to do some estate and financial planning and ensure everything you will need is in place. Are your parent's wills up to date. Do you have powers of attorney for both financial and personal care decisions? Have you consulted with a lawyer about the medicaid/medicare and other insurance rules where you live? The latter is important if you are going to conserve assets to pay for what can be very expensive care. Your father's dementia will progress and he will not be able to manage on his own, much less look after your mom. You need advice on how to structure the finances to make them easy to manage and to preserve value.

What you are describing is entirely typical of dementia. As well as the 13 strokes you know about, it is very likely he has been having all kinds of even smaller strokes or blockages - so small they show no symptoms. However, each one causes a bit of damage, and over time, more and more accumulates, resulting in progressive and irreversible brain injury. It's very common - it's called multi-infarct dementia or sometimes vascular dementia .

Here is a really good article for you to read, that will help you understand what your dad is going through
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Although it refers to Alzheimer's, what the article describes is the same thing that any person with any cause of progressive dementia will experience. Your dad is doing the best he can with a damaged brain. His reasoner is broken, so no matter how much you explain or argue, he can't see what you can see.

Below my signature, I have pasted the most commonly used set of "stages" for dementia. Multi-infarct dementia follows pretty much the same course. My guess is your dad would fit at about State 4 or 5. He is likely more impaired than is readily apparent to you. If his personality is intact, he may be very good at hiding his deficits. After all, we very rarely grill our loved ones. When my mother in law was diagnosed, they put her through some cognitive testing, sort of like what you would do for a kid with suspected learning disabilities. At the time, if you had met her in a social setting, you probably wouldn't have thought there was a darned thing wrong with her, other than a little forgetfulness. However, the testing was totally shocking to us as it revealed so many problems. It was worth doing, because it shook us out of our belief she was basically fine. We were given a much more realistic understanding of exactly where she was mentally, and what her capabilities were.

Hope this helps. I know this is very difficult emotionally, particularly if your dad has always been a capable authority figure in the past, and is used to being independent and in charge. Come back and ask anything you want.

Mary G.



In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of dementias such as Alzheimer's disease. Even today, nine years later, when experts referto 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 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