Expert: Mary Gordon - 1/25/2008

Question
My father has advanced dementia. He does not have functional speech, is  incontinent and has to be fed. He was ambulatory till he broke his hip  few months ago. Because of his dementia doctors decided not to intervene at all (no treatment for fracture). At the present time he is either in bed or staff is sat in in an armchair. He has some bed sores but they are not too bad. He does not appear to suffer pain. He has good appetite but is
wasting away. In addition to muscle rigidity he recently developed contractures and jerky movements in his arms and his legs shake sometimes.He has very little control over his arm movements. Is there anything that can be done
regarding contractures? Would physiotherapy or massage help? Would cortisone injection help? I know he will not get significantly better but I would try anything to make him more comfortable and prevent unnecessary suffering.
Thank you for the opportunity to ask the question.


Answer
Hi Hanna

Here is a description of the last stage (7) of Alzheimer's (developed by Dr. Reisberg).

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  

Depressingly familiar, isn't it? As you know, part of the disease involves loss of muscular coordination. Even if he had not broken a hip, he would have ended up in the same place. My mother in law broke her hip in Stage 6. It was repaired surgically, but we were never able to get her back on her feet again, because she could not cooperate with therapy (i.e. it hurt, she didn't understand why it was important, she was weak and had poor balance, and being upright scared her). We had to give up, and she spent the remaining 2 years of her life like your father - in a chair, or in bed.

As the disease progresses, everything that is happening to your father unfolds. They can develop what is called myoclonal jerks - the jerky movements you are seeing. It's a function of central nervous system damage.

The bedsores are the really big concern - because they suggest (along with the contractures) that he is not being repositioned and moved around frequently enough. His skin is breaking down due to lack of circulation over pressure points, and his immobility is also causing his limb contractures and  "freezing" of the joints.

Cortisone helps with inflammation by suppressing the immune system - not a good plan in the frail elderly, particular one with bedsores. His joints are not inflamed - they are contracting from lack of movement. You can talk to the doctor about it, but I suspect your father needs all the immunity his body can muster at this point.

Staff should be working to maintain his range range of motion in the joints, by carefully and slowly moving his arms and legs two to three times a day. It helps to perform these exercises when the person's skin and muscles are warm, such as immediately after bathing. A physical therapist can be called in to show them the proper technique for range of motion exercises. It can't hurt to consult one, and it might help, particularly if the goal is to prevent the worsening of the contractures. See what the therapist thinks about any further goals i.e. it may not be realistic to try and reverse his current condition, particularly if there is the potential for any therapy to cause discomfort. He won't understand it and he may be disturbed or frightened by it.

You might want to consider buying an alternating pressure system air mattress (sometimes called air fluidized mattresses). The bed sores are infinitely more likely to cause him very serious problems than the contractures, and can potentially kill him because of infection. They are what killed Christover Reeve. Even in a chair, the nursing home staff will want to move him frequently, and you might want to look into gel or air cushions to keep the pressure off the sore prone points.

Gentle massage of his skin may be soothing to him, and may even help with his circulation. The nursing home staff will have to be very careful handling him because his skin has become very fragile, and they may hurt him without realizing it. Just to give you an example, wrinkles in his sheets can aggravate his sores, and even sitting up too far can cause shear forces on the skin that worsen things.

Here are some good basic tips with regard to bedsores - and you will note the warnings about massage over bony prominences.
http://www.ehow.com/how_13176_prevent-bedsores.html

Hope this helps. You are a good daughter, and he is lucky to have you looking out for him, and thinking of his comfort with such love.

Mary G.