Expert: Mary Gordon - 4/11/2011

Question
Hello, my mother was diagnosed with LBD in 2008. She has been going "down" slowly in both cognitive and motor sides. We have tried with DONEPECILO, then RIVASTIGMINA and we are now in GALANTAMINA (4 mg + 2 mg a day) for the cognitive facts. We have tried with LEVODOPA + CARBIDOPA for the stiffness in 2009, but the reaction was bad and we had to quit. Last week we started with LEVODOPA+CARBIDOPA+ENTACAPONA.
Even if she is completely dependent in 24 hrs a day help, she was doing well... not many hallucination, good sleeping, calm, not anxious, recognizing close relatives, being able to speak (perhaps difficult to understand what she was talking about), sometimes good phrases related to what someone else was talking about.., being able to walk inside the house or across the garden (always arm in arm with someone)
Last monday and tuesday her condition got worst. She spent most of the day sleeping, not talking, her eyes closed, poor feeding. On wednesday, the cognitive aspects started to come back, she started to talk again, she was able to recognize me, the next day she started opening her eyes again, but the feeding is still worst. Thursday, friday, saturday and sunday she has been only on liquids. She is drinking (juice, coffee with milk, yogurt), but she is not eating. If you offer her anything solid, she refuses not with her mouth shut. If by any chance, you manage to give her anything solid, she keeps it in her mouth for a long time.. and then she gives it back. She sometimes does the same with liquids, but not so often.
Do you think she is somehow trying to put this all off?
Is this the beginning of swallowing problems? (she is not choking, she is just shutting her mouth when you offer any food, but accepting some liquids)
Many thanks,
Virginia

Answer
Hi Virginia, as you know, one of the most frustrating features of Lewy Body can be the huge fluctuations in the cogntive symptoms moment to moment, hour to hour, day to day or week to week.
This may be part of what is going on right now, and she may come out of this. It's hard to say. What is going on could also be related to the start of the Parkinson's drugs.

I know you realize that Lewy Body has symptoms that straddle Parksinson's and Alzheimer's, with some very distictive features. Lewy Body patients respond much less dramatically to drugs such as Levodopa that are used to treat Parkinson's. Nerve cell loss in the subtantia nigra is not as severe Lewy Body as in Parkinson's. Parkinson's patients lose the neurotransmitter dopamine; Alzheimer's patients lose the neurotransmitter acetylcholine. Lewy Body patients lose both. You should be aware that Parkinson's specific drugs like Levodopa can actually aggravate other symptoms in people with Lewy Body, most notably the cognitive functioning.

When people with dementia start to develop dysphagia, they don't just have trouble with swallowing. They have trouble chewing and manipulating solids in their mouths because of issues with muscular control. They may chipmunk (which is part of what you are describing) which is keeping the food in their mouth and not swallowing (which puts them at huge risk for aspirating and choking). I have a friend whose mother literally passed away due to chipmunking banana pudding. The aide who was feeding her was not watching for swallowing, and the poor woman was keeping food in her cheeks, aspirated and passed away before help could arrive. You may want to ask for a referral to a dietician and a speech pathologist, who surprisingly enough, are the dysphagia experts in the system, and who can advise on feeding strategies. Even if she comes out of this temporarily, it will come to stay eventually, so you need to be prepared.

When people are developing dysphagia, they often have trouble with mixed textures, like cereal in milk, or anything requiring chewing. They also often have big problems with thin liquids. This is why they end up on purrees. They can need thickened liquids as well (i.e. there are actually products that you add to liquids to give them a thicker consistency to help with swallowing. You will want to make every calorie count if she will only take in limited quantitites - perhaps some liquid nutritional supplements such as Boost, Gain, Ensure if all she will take in are drinks.

I know it's tempting to want to ascribe deliberate planning to what she's doing, but I don't think this is possible. In order to be doing this "on purpose" because she's had enough, she would need to be aware of her situation, and be able to consciously plan out a course of action, know the consequences and carry it through. I doubt very much her poor injured brain is capable of that kind of effort.

An odd feature of advancing dementia and feeding issues is that they don't seem to feel hunger or thirst like a healthy person. Either they feel the physical sensations and don't know what they mean, much less what they should do about them, or they just don't feel anything. Perhaps they just don't know what food or drink is or why they should be bothered with it. Sometimes they won't show interest even with coaxing and frequent attempts, even when you'd think they should be very hunger or thirsty.

My first thought is unless you are seeing big improvements in her physically in response to the recent change in Parkinson's meds, you might want to consider if it's worth keeping her on these drugs, particularly if the meds might be having an impact on cognition, which seems suspiciously likely due to the timing. Everything has a price tag, and right now, in terms of quality of life, alertness and cognitive function might be top of the list for general quality of life.

Thinking of you.

Mary