Expert: Mary Gordon - 10/8/2008

Question
Hi Mary,
I wonder can you help me? My 68yr old Dad has Alzemhers and his condition has detioriorated rapidly in the last 6 weeks. He is at the stage where he still recognises me - most of the time, but he has lost the ability to hold his head up and is in terrible pain - so bad he is grimacing with it. It is very upsetting to watch.He is not talking much and his voice has changed.He still tries to walk around alot but needs someone with him now to hold his hand. His appetite is good although he has lost an awful lot of weight in the ast 6 weeks and looks dreadful.I have spoken to his doctor and requested that as much pain relief as possible be given to him , he does not want him drowsy and the build up was making him so - at this point I would much prefer him to be drowsy even sleeping alot if it would reduce his pain. It is so cruel that he is allowed suffer like this and although I am devastated at the thought of losing him I pray to God he will pass away quickly now so that he can be at peace and pain free. Can you answer " questions for me 1. Is the use of Botox acceptable medicaly for neck relief or would his doctor balk at it? 2. How long will my Dad last and will the physical suffering get worse before he passes on?I appreciate your opinion thanks and regards , Suzanne

Answer
Hi Suzanne,

Below my signature I've pasted the stages of Alzheimer's. He sounds like he is in Stage 6. What is going on is clearly not just the AD. The stress of being in pain will impact his cognition, as will any illness at all. After all, think about how distracted or fuzzy headed you or I can get from a head cold or the flu or just from being tired and having a back ache. And that is with our totally intact brains. Then imagine your poor dad, just holding on to what he has left with his fingernails If he is having terrible pain, that is going to make his mental alertness really seem to have deteriorated.

My mother in law died of end stage AD, and pain was not part of her journey. Something else is going on for your father.

Does the doctor not have any ideas of what has changed for your dad in the last 6 weeks? Does he have any theories at all? An arthritic condition? Some other problem like an undiagnosed infection, a pinched nerve, a cancer?  Although it is a challenge to assess and manage pain in a person who can't fully communicate, your father's pain should be dealt with.  

I am not suggesting that if he did have a serious illness that you would want to aggressively explore it or treat it (for many things, palliative care might be the kindest). However, your father deserves to be as comfortable and serene as possible, and pain has both a physical and an emotional aspect. He deserves the best possible quality of life, and he can't have that if he's in agony.  If he's in pain, that might also impact his appetite or ability to eat enough, get rest, or enjoy the few things left to him that might bring him some moments of happiness.

Have you talked to the doctor about how to achieve better pain control? You might want to consult with hospice care staff to see what they think. Clearly, some creative thinking is needed. If this doctor will not assist, ask to be referred to a geriatrician with a pain management specialty, to a pain clinic, or to a hospice doctor to get some ideas.

Your dad is lucky to have you looking out for him, and you are right - your dad deserves better. I don't know what his doctor would have to lose trying Botox - it is being used for certain types of chronic neck and back pain. Certainly what he's been doing up to know isn't working so he needs to come up with something else or find someone who can.

This kind of pain is really not acceptable care.

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 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 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., 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