Expert: Mary Gordon - 5/1/2010

Question
Dear Mary,
    My name is Sandy and I have wrote to you several times before. You have always been very helpful . I have yet another question . My Mom is in what i think is stage 7 .She is in depends and on soft foods she also cant talk except for a few words.She don't know who any of her kids are anymore. She has been walking with her heard down,but now she is leaning to the right what would cause that and what is going to happen next? I read every thing i can on alzheimers but i don't know about this. And when should we call in hospice care?
   Thank you for all your help .
            Sandy

Answer
Hi Sandy,

Gait problems, and balance issues are common in many dementias. Irrespective of the cause, as brain damage advances, the problems get worse and worse until the person looses their ability to walk. Issues include impaired physical coordination (ataxia) which starts to show itself in a shuffling gait; slowness of movement; and an altered posture such as the leaning you observed.

When they are leaning significantly, it is sometimes called Pisa Syndrome (yes, like the leaning tower!) - although you will see some web sites describe it as rare, it really isn't. It happens to people with various kinds of brain lesions, Parkinson's disease (which causes a form of dementia itself), Lewy Body dementia, in Pick's, in Alzheimer's, and as a side effect from certain neuroleptic drugs like antipsychotics and cholinesterase inhibitors (classes of drugs sometimes used to treat AD).

It is a stooped posture with pronounced leaning, generally forward or to one side when sitting or standing. It's so common in Lewy Body dementia they call it the "Lewy Lean". The person don't seem to be aware of it, and doesn't really have voluntary control of it - you will probably notice if you convince her to straighten up, a few seconds later the lean is back. For some people, it's always one sided (i.e. they will always lean left), and others will lean in various directions.  It's a form of axial dystonia. It appears it's from an imbalance of neurotransmitters. There is some suggestion in a 2007 study I saw that in people with Alzheimer's, it is related to cholinergic excess.

Sometimes changing meds will help (if the lean is at all related to any meds she is currently taking), but more often, it's something that can't really be helped, other than trying to really be vigilant about fall prevention for her. It's worth discussing with her doctors and doing a review of what she's on to see if anything could be contributing.

Generally in the US, most hospice programs will take dementia patients when the prognosis is a survival time of six months or less and be in Stage 7. To qualify the person usually has to have a pattern of continuing weight loss, repeated infections and be having trouble holding up their head. Here is some information. You will have to do some research and talk to local facilities to find out about the palliative care and hospice options and programs available where you live. Here are some links.

http://www.aboutagingparents.com/2010/02/hospice-care-for-alzheimers-and.html
http://www.alz.org/national/documents/medicare_topicsheet_hospice_benefit.pdf

Hope this helps

Mary G.