Expert: Mary Gordon - 9/28/2006

Question
My name is Jason Swearingin. Im 22 years old. I have recently found out that my grandma had Alzhiemers Dementia then later found out that it is Vascular Dementia. It scares me so bad that I cant help her. She raised me as a little boy and I always told her that I would take care of her. I have got a wife and young daughter. My grandpa is worried as well as my mom and aunts but I cant stand not keeping up to my word.I don't know nothing about the disease but want to help her so badly. Mary if there is anything you can say or do(or if you could point me in the right direction) I would so appreciate that. Like I said  Im so in the dark on this and dont know what to do,I love my grandma so much and would do ANYTHING to help her

Answer
Hi Jason - your grandmother has a progressive incurable form of dementia caused by tiny blockages to blood vessels in her brain - as you note, this is vascular dementia, so she doesn't have Alzheimer's. Having said that, it will take her to the same place as Alzheimer's.

Essentially, its like having constant teeny strokes, that cause scarring and shrinkage in the brain, as more and more damage accumulates. The mini-strokes can be happening silently - i.e. she may not show any sign of the blockages, other than a gradual decline - or she may progress in fits and starts (i.e. sudden declines, followed by plateaus). There is not much that can be done to stop the process - it can be slowed down in some people a little bit, with certain medications, but they don't help everyone, and are not a cure - or even a way to hold the person at a particular stage.

Below my signature I've pasted a the most commonly used description of the stages of Alzheimer's. Vascular dementia will cause a similar progression.

I know this is breaking your heart. I would suggest you go buy yourself a copy of a very good book called "The 36 Hour Day" by Mace and Rabin, published by Warner. It is available in most bookstores and on line in paperback form so its not expensive. Its very good explaining the kinds of behaviors you may start to see, what to expect, and good ideas about how to respond.

As you probably know, the brain damage doesn't just affect memory, but judgement, reasoning, language, emotional control, depth perception, muscle coordination, ability to recognize people, places and things. Even personality will be impacted.

With time, she will need supervision and support 24/7  - so keeping the person well looked after and safe becomes too much for most families (its round the clock duty with no breaks, since you can't leave the person alone for a minute, and they need help with everything. They become incontinent, may wander, get up during the night repeatedly, etc.  

Here is what you do. You do what you do best and the one thing you can do that no one else can do - you love her. You spend time with her. You give your grandfather a break by helping him with errands and chores, or by "babysitting" your grandmother for an afternoon so he can have some time to himself. If he needs something researched, go find information for him (like where to get safety items for the house like tub rails, or how much local "adult daycare" costs, or find someone to help with housework).

You just keep in mind that your job really is to love her and look out for her best interests. Anyone can do the chore work. It doesn't have to be you personally. The best thing for you do is to make sure good care is there and that your grandfather has what he needs to cope. This is going to be a marathon, and keep firmly in mind what your grandmother would really want - that you look after your wife and daughter first and foremost, and yourself.

This can go on for years and years, particularly if she is fairly healthy. By the time your grandfather can no longer look after her alone, the world will be a jumble to her, and if she had to live in assisted living or a special dementia unit, it would upset you much more than her.  You make promises in your life based on who you are at the time, what your circumstances are - but everything is changing.  You are a husband and father now - so your first duty is to your marriage and child. I know you can't imagine this now, but in time, she won't be the woman you made those promises to any more in a very real and profound way, and decisions have to be made on the basis of who she is turned into. She will need more help than she may be able to get in a home setting, and you have to be able to think about what is best for everyone involved - that is the tough part of being a grown up. She wants and needs your love and support, but not the sacrifice of your career, your marriage, your family life, and your social life. I think that is the very last thing she would want for you.  

Hang in. She's lucky to have someone who loves her so much!

Mary

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 travelling 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