Expert: Mary Gordon - 12/20/2004

Question
Hi Mary,
 My southern gentleman father is 90 and has been officially diagnosed at modeart AD for three years. He has no idea where or why he is somewhere or anything about his environment or current events. Needs help dressing. Yet his personality is in tact. The other day I showed him something I had bought for him to give my mom for Christmas, and he smiled and said, "You are something!" meaning he knew what I had done for him. He adores my mom (65 years of marriage) thanks my husband for playing the organ and said he wished he could play. He reads with a "bit" of comprehension and he "helps" me with driving (you're ok on the right) and says he knows he's safe when i drive. He tells my mom he loves her and he hugs me and says he loves his girl.
   He is incontinent sometimes at night, but during the day know when to toilet himself.
     Is it usual that his personality be so in tact and his cognitive is truly going rapidly. They are in assisted living but come to my house often.
  I know- I'm in denial-but he certainly remembers family relations on a soul level!
Thanks for any illumination that this is not unusual and I'm kidding myself to think it might just be dementia w/o AD and he might not become so dreadfully physically helpless in the end. And if he does, will he really not feel betrayed by me for not being with him? Can't even write without tears.
Laurie


Answer
Below my signature, I've pasted Dr. Reisberg scale of seven stages of Alzheimers, which I know you've seen before, just for your reference.

My heart really goes out to you. God love you for being such a wonderful daughter. Your father is so lucky to be cherished as the heart of such a loving family.  

Not everyone who gets Alzheimer's undergoes a personality change. My mother in law stayed "herself" until well into Stage 6. She was always a very gentle, quiet, kind person, and that never changed. She just got vaguer and vaguer about the details. Socially she seemed very much the same person, and retained the ability to carry on a very good conversation far into the illness, to the point that many of her friends and several family members had a very hard time believing that she wasn't well. When you talk to someone on the phone and they seem normal, its hard to believe they can't dress themselves, or make themselves a meal. What happened next was not so much a big change in her personality as a slow vanishing - like watching a boat go out to sea until it disappears from view. She didn't become different - there was just less and less of her over time, and her body seemed more and more to us like an empty shell. Her eyes were no longer windows in to the woman we loved, but just vacant. She had just drifted away so far - its like she'd already left in every way that mattered, and was tied to earth by a body that lived on.

Ssometimes I think as the disease does its damage, its like the person is running through all the excess capacity in their brains over time, and then suddenly, one day, the last neuron holding a particular connection together winks out. In the early stages, its small, gradual losses, but later, its bigger things - the ones that I know you fear. Just to give you an example, about two years before she died, my mother in law lost the ability to talk quite suddenly, over a period of about two weeks. Before that, she could answer questions and carry on simple conversations - after that, only nonsense syllables with the very occasional word or phrase that made sense. I'm not saying this to frighten you. Your heart doesn't want it to be happening but your head knows whats coming and that is the very worst feeling in the world.

I don't think you are in denial. I think you are grieving terribly for the loss of your daddy and struggling with having to watch him being carried away from you slowly and not being able to change what will be. Its painful, its gutwrenching and its sad. Alzheimer's is the one illness that robs us of our loved one while they still live - its sometimes called the long goodbye. You do your grieving without the closure of a funeral, because their shadow lives on.

At this point, he still looks like himself. He still sounds like himself. You can still see glimmers of the man he was before the illness. His memory and ability to reason may be slipping, but the kindness and love that were part of him, are with him still, even as he is slowly and relentlessly dismantled neuron by neuron - and of course you cling to hope. Any sign of the old "him" gives you hope that he's still in there, intact.

I know the agony you must be feeling. This is a nightmare of a disease, and a fine man deserves to end his years in a better way. Its so unfair that this has happened to him, to your mother, to all of you.

"Dementia" is not a diagnosis in itself. Its just a descriptive term like saying someone has a fever. If someone has dementia, its ALWAYS caused by something, some underlying disease process or injury. So, if a doctor says the person has dementia, the next question out of your mouth has to be...well, what is it from, what is causing the group of symptoms you are labelling as dementia.

As you probably know, there is a long list of illnesses that cause progressive mental impairment. Alzheimer's is one of the most common, and it gets diagnosed by ruling out everything else it could be. The older we get, the more likely we are to develop AD. By the time we are 85 (if we are lucky enough to live that long!!), over 50% of us have a progressive, incurable dementing illness like Alzheimers. Just from what you have written, the pattern sounds very much like Alzheimer's. If it would put your mind at rest, ask your mother for permission to speak to his doctor to find out how he was diagnosed.

Whatever your beliefs about where we go when we die, you know how he felt about you. You know he was proud of you. You are the living evidence of a life well lived, of his existence having had meaning.  By the time the end comes, he will be like a faint star, and whether you are there or not won't seem important. Now is what you've got. Now is what matters. Now he still knows you.

Its going to seem like a horrible subject to broach, but I hope you and your family have discussed your father's wishes for the later stages. When it comes to AD, the lucky ones who are those who are carried away by other illnesses - because the natural end of AD is pretty brutal on everyone. Many people with AD do die from other things, in part because having AD makes it very hard to diagnose and treat many common illnesses of the elderly - and the family may also hesitate to impose painful treatments on a person whose quality of life is already poor, and who can never really be well again.

It does help to talk through what might come next and what the options might be. If he developed a life threatening illness, would you want it treated other than palliative care, to keep him comfortable and out of pain? If  his heart or breathing failed, would you want him rescusitated or kept alive by artificial means? If he stopped eating, would you opt for tubes and IVs? Could you stand by and nature take its course?

We made the latter choice - not something every family is prepared to do. We were fortunate in that my mother in law had written out a living will so we knew what she wanted (no artificial or invasive means to keep her alive, no resuscitation etc.), and we had the support of the doctor, the care facility and our religious counsel. Looking back on everything that happened, we know, heart and soul, we did the right thing by her.

I hope this has helped. You sound like you need a hug. Alzheimer's is completely crummy, and I'm so sorry you are going through this. Its doubly hard in the holiday season.

Thinking of you.

Mary G.
Toronto



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 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., 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