I intended to make a brief mention about my wife's noise making, but I've expanded it somewhat.
The official list of symptoms for PSP (and associated conditions) found in medical information, is often of a technical or general nature. Even when there is good detail about such things as swallowing difficulties or continence problems, there are still many missing elements of those symptoms that carers find in their loved ones with PSP. One of these is "moaning".
This forum has already shared on the subject of the moaning, groaning, growling or humming (plus other descriptions of unusual sounds). Nevertheless, it might be useful to revisit it in case those new to this site may not be alarmed at this activity, should it occur down the track.
Very little has been officially documented on this subject, and those who have written the occasional study have suggested that unusual noises from PSP sufferer's may be similar to noises and babbling made in dementia patients (Alzheimer's in particular). The mechanism is elusive, even to neurologists and speech therapists, but probably is associated with damage to the brain in PSP (interruption of the fronto-corticobasal circuitry).
It has been suggested that the "noises" in PSP are due to throat clearing, complaining (perhaps of pain), a comforting mechanism, trying to stay in a conversation, and so on. Additionally, side effects from some medications can lead to hallucinations and noises (even screaming).
It should be noted that most evidence points away from these noises being associated with pain. However, a carer would need to make sure that pain is not an issue. Even if the loved one cannot speak anymore (just making noises), every effort should be made to assess any problems of pain. Perhaps long before our loved one stops speaking (and this will not occur in everyone), we set up some type of communication system with them (remembering they will almost invariably be aware of their surroundings and what you are saying to them).
My wife hums a lot (and occasionally groans). Strangely, I had never asked her until recently why she "hummed". After a short period of silence, she said slowly "Because it's comforting". I found that answer "comforting" to myself.
I know when "groaning/moaning" occurs all night, it can be "discomforting" to the carer.
I wonder what may be the experience of others on this forum?