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About Mary Gordon
Expertise
Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience
Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

You are here: Experts > People/Relationships > Senior Health > Alzheimer`s Disease > agitation

Alzheimer`s Disease - agitation

Expert: Mary Gordon - 10/26/2009

Question
I have been caring for a 94-year old Grandmother with Alzheimers for over two years now, but she had been diagnosed for many years. Up until two months ago she was still shuffling about with a walker and didn't have a lot of noticable symptoms, except for memory lapses, occasional "fuzzy days" and the like. After a bout with a UTI two months ago, she has not regained her ability to walk, has increasing agitation (first moaning, then screaming) and problems swallowing, sleeps about 18 hours a day (when she sleeps at night), is talking much less and some days has problems sitting upright in her wheelchair. Although this was a sudden change from the status quo, the Dr. treating her for UTI checked for strokes and did not find any.

In the last week or so she has become very disinterested in food. When I try to feed her more than a few bites she will roll it around and spit it into a napkin (even if its pureed). However, she will still drink Boost and water. (She had a healthy appetite before.) Reading the other questions posted has helped me understand the symptoms like walking, sleeping and eating, but I haven't seen much about agitation. She will respond "no" if I ask if she is in pain, but screams or moans anyway, day or night. The last few days she has taken to barking like a dog at the top of her lungs. At first, I think it was when she needed something like to have her diaper changed, or wanted a light on or off, or wanted someone to come to her. And, at first she would stop screaming when someone entered the room. Now she responds that she doesnt know why she is screaming or if she wants anything. Sometimes she is able to gradually wind down at night, but not always.
I have resisted giving her any pain medication to help her sleep, for one reason, it causes constipation, which is also a constant problem. Also, she needs to be awake at least as much as she is now to get any nutrition/fluids. Any suggestions?
Melanie

Answer
Hi Melanie, the UTI alone can be enough to really plunge a person into a spiral mentally. I'm not sure what the doctor did to check for strokes, but short of a brain scan (which would be very difficult to put her through), it's hard to spot small ones. Sometimes the person has no obvious symptoms - just a noticable drop in cognition and abilities. It's really academic, since the information might have been satisfying just to know, but that wouldn't have helped do anything to improve her situation. She is frail, she is 94 and she is in late dementia.

Having said that, there are medications for agitation - you should talk to her doctors about that. The goal now is really palliative. You want her to be as comfortable and content as possible.

There is no magic bullet here. Every drug has a down side in terms of potential side effects, and not every drug works the same in every person. Be prepared to try a couple of different medications and have to try different doses to get the right outcome. You just have to try different things and watch carefully for effectiveness and side effects.

Antipsychotics (also known as neuroleptics) are drugs that were originally developed and are effective for the treatment of people with schizophrenia. They are the most commonly used drug treatments for the treatment of restlessness, aggression and psychiatric symptoms in people with dementia. The two drugs with the best evidence of effectiveness are risperidone and aripiprazole

Anticonvulsant drugs, such as sodium valproate and carbamazepine, and antidepressants such as trazadone and citalopram are also sometimes used to reduce aggression and agitation.

It is often very hard to tell if a person is in physical pain by the time they get to Stage 7 dementia, since their verbal abilities are so impaired they can't really answer questions. As you note, sometimes they make a lot of noise just when they are feeling upset or they want something. You mention noticing some patterns of needing attention to her vocalizing. That can be helpful if it lets you head her off at the pass (i.e. give her some attention before she really gets going, change her schedule around, change her environment etc.)

Her eating problems sound like they are related to her dysphagia, which goes with later dementia. I would ask her doctor about having her assessed by a speech pathologist (who are the specialists who evaluate chewing and swallowing problems). The speech pathologist may be able to work with a dietician to review what can be done in terms of potentially changing what she is fed, when, how often etc.

Hope this helps a bit.

She's very lucky to have you looking out for her.

M

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