Believe Grandma Received Incorrect Diagnosis

[blu]

I took my 94 y/o grandmother for a dementia screening last week and the doctor thinks she has pseudobulbar affect. However, in researching this, I don't see how she can have it, she doesn't seem to have any of the symptoms. She doesn't laugh ever. She doesn't really cry. If she does, I believe there are reasons for it - like when she can't put her feet up in the recliner because she can't pull the lever back.

It's unclear whether she received a dementia diagnosis, but she's due for a follow up next month so I'll find out for sure then. I had mentioned she's been vocalizing but couldn't describe what she's doing, I described it as a moaning/crying type of thing. After the appointment, I realized I should've said it was a moaning/whimpering noise. The doctor did get to witness some of it. He thinks it's emotional based because she does it when she does things she doesn't want to do - like get up and walk to the bathroom, go to the doctor's office, go to the store. I didn't think to mention that I can usually get Grandma to be quiet if I give her a lollipop or similar hard candy on a stick - I call it an adult pacifier.

When it came to the dementia screening, Grandma did fairly well. She didn't know the year, month or date despite having a calendar and digital calendar clock beside her at home. She also couldn't remember the three words she was asked to remember. Other than that, she did ok.

Any thoughts on this? I had to wait several months for this appointment and I feel like it was useless. I kind of just wanted to know what's causing these vocalizations, even if there was nothing we could do about it. I hate to think she could be in pain (she says nothing is wrong) or having anxiety or depression. She is aware she makes these noises, but she doesn't know why and can't stop. Other times she says she is just grunting and it makes her feel better.

 

[Cat27]

Welcome to DTP @blu
If you think she’s in pain could you try giving her two paracetamol daily & see if that helps?
Please keep posting as you’ll get lots of support here.

 

[Lawson58]

I can't really comment on the pseudo bulbar affect but what you describe about your grandmother doesn't seem to be a normal response to the situations you mentioned.

I would also say that if she couldn't recall the three words when requested then she has some fairly disfunctional short term memory problems.

My understanding is that this affect is often a symptom of a few quite serious conditions so I think you need to wait until the follow up appointment before deciding that the assessment so far has been a waste of time. The doctor did witness some of her behaviour and though they don't always get it right, perhaps it might be helpful for you to wait until you know more.

 

[canary]

Pseudobulbar Affect isnt a diagnosis - its a symptom.
PBA is often a symptom of dementia, but can also be a symptom of other forms of brain damage.
The things you describe dont sound like normal responses and the fact that she doesnt know why she is making these sounds and cant stop is probably why the doctor says its PBA.

 

[blu]

I just found the paper work from the doctor. It lists the diagnosis as "dementia without behavioral disturbance, unspecified dementia type" and Pseudobulbar affect (PBA).

The information I was given describes the symptoms of PBA as, "frequent, involuntary and uncontrollable outbursts of crying or laughing that are exaggerated or not connected to your emotional state." Grandma does not cry or laugh. She does something that looks like crying, but it's not crying. The noises she makes are almost always related to getting up and moving around. Sometimes she might make them in bed, but it seems to be when she wakes up. Other times she makes the noises when she's hungry or wants something (like help putting her feet up). I don't know why she just doesn't say she's hungry or that she needs something. It's only a small percentage of the time that she makes the noises for unknown reasons. Sometimes when we're playing a card game that has seven hands/rounds, she'll start making the noises very quietly as we approach the fifth hand. She definitely struggles with gameplay as the difficulty increases. In fact, in the last two hands, I often have to help her a lot because she doesn't know what cards to play. This card game is called Contract Rummy.

I just can't see how any of that adds up to PBA.

 

[TNJJ]

I just found the paper work from the doctor. It lists the diagnosis as "dementia without behavioral disturbance, unspecified dementia type" and Pseudobulbar affect (PBA).

The information I was given describes the symptoms of PBA as, "frequent, involuntary and uncontrollable outbursts of crying or laughing that are exaggerated or not connected to your emotional state." Grandma does not cry or laugh. She does something that looks like crying, but it's not crying. The noises she makes are almost always related to getting up and moving around. Sometimes she might make them in bed, but it seems to be when she wakes up. Other times she makes the noises when she's hungry or wants something (like help putting her feet up). I don't know why she just doesn't say she's hungry or that she needs something. It's only a small percentage of the time that she makes the noises for unknown reasons. Sometimes when we're playing a card game that has seven hands/rounds, she'll start making the noises very quietly as we approach the fifth hand. She definitely struggles with gameplay as the difficulty increases. In fact, in the last two hands, I often have to help her a lot because she doesn't know what cards to play. This card game is called Contract Rummy.

I just can't see how any of that adds up to PBA.

Dad does that sometimes in the afternoon.It is usually a "mmmmm".He is either in his chair or going to the toilet.He knows he is doing it but not why.His reply is "Something to do"! It drives me mad!

 

[blu]

Dad does that sometimes in the afternoon.It is usually a "mmmmm".He is either in his chair or going to the toilet.He knows he is doing it but not why.His reply is "Something to do"! It drives me mad!

I've read that this type of thing is fairly common in dementia and Alzheimer's, but I've never come across anything that states what it is or why they're doing it. If it's that common, I don't know why this doctor (a neurologist) doesn't know about it. I just searched through this forum and there are lots of people saying their loved one makes those noises. So how this doctor came up with a diagnosis of PBA is beyond me. I just wish more research was done on dementia.

 

[Lawson58]

So you have been given a diagnosis of dementia of an unspecified nature which seems to have a wide range of possibilities, which usually means that he is leaving his options open.

My husband was diagnosed with Alzheimer's over five years ago and has been given four different variations in that time. Does he have dementia? Absolutely. Does he fit any of the boxes usually associated with Alzheimer's? Some of the time but not always.

So your opinion differs to that of the neurologist but I am not sure why you are so concerned about it. It is a symptom and may well change at any time in the future. The dementia diagnosis is the bit that is of most concern.

 

[blu]

Thanks.

I don't want an incorrect diagnosis being on Grandma's medical records. It has the potential to cause problems. Also, I'd rather the doctor focus on what's really going on rather than focusing on an incorrect diagnosis.

 

[Cat27]

Dementia is an ever changing thing. The diagnosis of variants may change with time.
I think that you need to focus on getting the right care & support in place rather than the label.

 

[Louise7]

Raise your concerns at the follow up appointment next month, but in the meantime try the advice given above with regards paracetamol to rule out any pain. It's quite common for symptoms of pain to be overlooked as 'dementia' related when they're not and based on this thread and earlier ones it appears that your grandmother has a tendency to make the noises when moving. My Mum vocalises when she is in pain but saying that your grandmother is 94 so general aches and pains are to be expected. Maybe giving her a bit of a break from walking to the store, and reducing the number of rounds in your card games, might be worth trying to see if it helps.

Also, I'd rather the doctor focus on what's really going on rather than focusing on an incorrect diagnosis.

I'm not sure what dementia follow up is like in the USA but here in the UK it is very 'hit & miss', and often once a diagnosis is made and medication is given there's not a lot else given by way of dementia treatment. As others have stated, the diagnosis is mixed dementia, with pseudobulbar being more a 'symptom'. If you're not happy with the 'label' given by the doctor let him know, and ask for more details at the next appointment. I understand that those with pseudobulbar effect may be prescribed anti-depressants, and you suggest in your first post that this might be a possibility, so anti-depressant medication would help prove or disprove this. Sometimes you have to rule out other things before you can find the cause, although that's not to say that the doctor is wrong, and we're not medical experts here. Hopefully the follow up appointment will help to put your mind at rest.

 

[Lawson58]

P

Thanks.

I don't want an incorrect diagnosis being on Grandma's medical records. It has the potential to cause problems. Also, I'd rather the doctor focus on what's really going on rather than focusing on an incorrect diagnosis.

I think you are focussing on the pseudo bulbar affect as being the diagnosis which it is not. The important thing on your grandma's record is the diagnosis of dementia and that will be the thing that has implications for her care. It is easy to confuse a diagnosis and symptoms. Symptoms can change but the diagnosis is not likely to so don't get hung up on this. Your grandma's future depends on her diagnosis of dementia and where you go from here.