Expert: Mary Gordon - 7/2/2008

Question
My mother has an advance stage of Alzheimer's, she is 70 now. Her cognitive abilities declined rapidly in the last 5 years. At this stage she needs full assistance. In the last 2 month her neck got bent and stiff and she can not hold her head up straight. We are having hard time feeding her, but we found some ways. Also she stopped walking and spends most of the time sitting on the bed. The worse she would sleep and it looks like sometimes she lost ability to lie down, she might sit for 2 days without sleeping and then, when too tired and with our help she might sleep for 8 hours and then same thing begins again. When we try to help her to lie down she becomes aggressive and agitated and will not let us help her. My questions are: She can not hold her head straight up for almost 2 month now; we tried all kind of medicine including tension reliving drugs, but it did not help is she ever going to recover from bent neck or not. The second question regarding sleep and controlling body movements we have tried many sleep medications, they sometimes work, but in most cases not what we can do to at least make her feel relaxed and sleep.  The third question is regarding to stage of the disease, is she on the latest stages her moving abilities declined rapidly in the last 6 month and she lost a lot of weight.
Thanks in advance!
-Hayk

Answer
Hi Hayk

I am sorry you are going through this. It must be very difficult to deal with when she is in discomfort and distress and you cannot help her. She is very lucky to have her family so concerned about her and doing everything in their power to look after her.

Speak to the doctor about the neck problems. It sounds as though she is experiencing some rigidity and spasticity of the muscles - what you are seeing is often called dystonia. There should be something they can do to make her more comfortable - they sometimes use shots of botulism toxin to partially paralyse the rigid muscles, which makes them relax. This kind of dystonia is sometimes associated with Parkinson's disease, which also can cause dementia. Have you talked to the doctor about this? Since it is making it difficult for her to rest and to eat, this really needs to be attended to.

Later stage dementia causes many problems. They lose their ability to control their muscles, which means they can't balance, they lose their ability to walk or do anything for themselves. They also start to have problems chewing, moving food in their mouths, and swallowing. The problems with coordinating swallowing is called dysphagia. They do best with pureed solids and liquids that are thickened - thin liquids make them choke. They also have problems with foods that have a mixed texture, such as soup which is thin that has bits of solid food in it, or cereal with milk. Everything they take in should be the consistency of pudding. You can buy products like "Thick-it" that can be added to fluids and thin purees to make the consistency better. http://www.thickitretail.com/thickeners.html
There are other brands. Speak to the doctor and to the pharmacist. It may be possible to get an assessment done on her dysphagia and have a nutritionist come up with a strategy to keep her weight up. I would try hard to put an emphasis on high calorie foods. If she will eat more at certain times of the day, give her whatever she will eat that is very high nutrient and calory. You can also add oils and fats to foods to get more calories into her. Losing weight is not a good sign of longer term survival at this stage, as they become very frail and thin, and then become very susceptible to infections. They have no resistence or reserves left to fight with.

Have you tried a reclining easy chair for her? One that she could sit in that you could slowly move into a reclining position for the night? You may be able to rent something from a medical supply place. Even a hospital type bed might be useful - you can prop her upright in it and crank the head down for the night.

I am also surprised that the doctor has not assisted more with her agitation levels. It cannot be a happy situation for her or for her caregiving family if she is not able to rest and is upset.

She may not recover to the point where she can hold her head up properly, but certainly they should be able to make the rigid muscles more relaxed so at least she is not uncomfortable.

Below my signature, I have pasted the last two stages. These are from the FAST scale developed by Dr. Barry Reisberg in 1982 and remain the most commonly used set of stages. From your description, it sounds like she is Stage 7, but it does sound like she also has some Parkinson's like symptoms at the same time - it is quite possible she has both dementia and Parkinson's at the same time, or other neurological problems causing the dystonia.

I hope this helps. I'm sure you feel that most important thing for her is that she feel no pain, that she feel no distress or upset, that she be peaceful, rested and cared for. Tell your doctor that the family is upset that she is in this state, and that he must find a way to assist her comfort and mood.

Mary G.


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