Expert: Mary Gordon - 8/14/2010

Question
Mary,

I've written to you before;  you've been very helpful.

My mother is in Stage 7 of AD.  She currently is completely dependent on her caregivers, living at home with my father.  She sleeps off and on all day, is fed baby food by her caregiver and is completely incontinent.  She is confined to a lift chair during the day and a hospital bed at night.  The caregivers are able to get her walking, with a walker and their assistance, briefly once or twice each day.  Several months back she began making very loud growling noises that have gotten progressively worse.  They can occur during the day, but mostly are made after being put to bed at night.  They often escalate into loud yells/screams, like she's possessed.  When this occurs at night, she may or may not appear to be sleeping.  It's very disturbing to hear.  Blood-curdling at times.

I've not found much information as to why this occurs.  Any insight?

Eternally thankful for your help,
Sharon

Answer
Hi Sharon, I know this is really upsetting for the family and the caregiving team, but it isn't super rare. Some people in later dementia get into saying a particular garble phrase over and over and over, or yelling a specific word, screaming, growling, barking. It  may be more common for individuals with impaired language or communication abilities. In such cases, screaming may be an attempt to communicate something in the absence of intact communication abilities.

On my mother in law's AD ward, there was a lady who sat very quietly and passively in the hallway in her chair. She looked quite comfortable and safe, and physically relaxed yet she would yell "HELP! HELP ME!!" over and over, particularly in the evening in a very odd monotone. It was very loud but she didn't really sound upset. I've also seen people say a single name over and over again tonelessly (which can drive a caregiver nuts if it goes on long enough).  My mother in law would get very animated and yell nonsense phrases rhythmically - sort of a "na, na, na, nunga nunga nunga" noise that is hard to describe. And, as per your poor mother, I've heard screaming and wailing, moaning - very distressing noises like someone was being tortured.

It's almost like a tic - and it can be a form of agitation behavior. It can also be a side effect of some medications. It can even be an attempt to communicate something in the absence of intact communication abilities. It can also be a response to unmet needs, or discomfort.

Here are two articles (Part 1 and 2 by the same author), the first about the potential causes and the second about approaches and interventions.

http://www.stacommunications.com/customcomm/Back-issue_pages/AD_Review/adPDFs/ja...

http://www.stacommunications.com/customcomm/Back-issue_pages/AD_Review/adPDFs/20...

Hope this helps. This one can be a tough nut to crack, given that you basically have to be a detective, make some assumptions, and try various things - and you can't always successfully figure out a cause or a good solution. Hopefully these articles will give you some thoughts for things to consider or try.

Mary