Do we know what our dementia loved ones are thinking?

[dcrowex]

I often wonder if there were any studies to determine what our loved ones are actually thinking. I sit with my friend, mostly non verbal, and she stares at the floor or the TV. If I make a comment, she does not usually respond. She may look at me, but usually not. So I wonder, does she know what I just said? When I make a comment about a character on TV, does she understand? When I ask her if she needs anything, does she understand what I am asking? When I mention her tray of food in front of her will get cold and she needs to eat, she just looks at the tray. I know she hears me but I do not think she can process what I am saying. She may mumble something and if I ask here what she just said as I didn't hear her, she does not respond or gets irritated. Anyone else wonder these things? I read what I can about this but I never see this being addressed.
Best regards to all, Debbie

 

[hillyjay]

That’s a really interesting point you've raised. I wonder if…you know when you’re coming round from a general anaesthetic and someone speaks to you and you know it but you have no impulse to reply ….could it be something like that? I think you could be right in that your friend is unable to process what you’ve said. When you mention the tray, she does know what you’re talking about but is maybe unable to take it any further than that as to the end results of not eating her food i.e. it will get cold.

 

[Kevinl]

I'm with hillyjay, like coming round from an anaesthetic or a bottle of whisky, you know what everything is but you can't put the pieces together to make the whole picture.
An ugly phrase but "zoning out" was how one social worker once called it, bit like when you're so emersed in doing something so intently that a knock on the window or the door makes you jump.
Lack of concentration and intense concentration have a lot in common. K

 

[Angel55]

I often wonder if there were any studies to determine what our loved ones are actually thinking. I sit with my friend, mostly non verbal, and she stares at the floor or the TV. If I make a comment, she does not usually respond. She may look at me, but usually not. So I wonder, does she know what I just said? When I make a comment about a character on TV, does she understand? When I ask her if she needs anything, does she understand what I am asking? When I mention her tray of food in front of her will get cold and she needs to eat, she just looks at the tray. I know she hears me but I do not think she can process what I am saying. She may mumble something and if I ask here what she just said as I didn't hear her, she does not respond or gets irritated. Anyone else wonder these things? I read what I can about this but I never see this being addressed.
Best regards to all, Debbie

💗 I do ponder yes and sometimes I notice it seems as if I am speaking another language entirely and I re phrase what I am saying or simply smile. Maybe it feels all wool like, you know when you have a head cold and everything can sound fuzzy and your head just feels wrong somehow. My loved one could see their shoes were on the wrong feet but didn't know what to do about it, they just could not 'think' how to if that makes sense.

 

[maggie6445]

I'm not sure how they could do research on this ... Maybe scans or some way if recording electrical brain response, when questions are being asked, but would it be ethical on a vulnerable person unable to consent?

It certainly would be informative on a personal and possibly medical level

When I ask my OH to do something,e.g. lift a foot for a shoe, , he'll say " I am" but he isn't moving! He obviously thinks he is . So the link between thinking and the brain receiving the message and telling the foot to move is broken.

It must be a horrible feeling if your brain is telling your foot to move and the foot won't!

I've mentioned before that when I tap my OH left foot and ask to lift up for socks and shoes he'll lift his right foot! Same if I tap the right foot he'll lift the left. The brains wiring from sense of touch to response is opposite. It can happen with other body parts occasionally but is most noticeable with his feet! Every time!!

 

[canary]

Just curious, @maggie6445

Does your husband have LBD? Because with this they will often to the opposite to what they are trying to do eg, lean back when they are trying to lean forward, or push when they want to pull and their muscles often "freeze" when they are trying to move, but can't.

 

[SeaGirl]

Just curious, @maggie6445

Does your husband have LBD? Because with this they will often to the opposite to what they are trying to do eg, lean back when they are trying to lean forward, or push when they want to pull and their muscles often "freeze" when they are trying to move, but can't.

That's a really interesting observation. My husband has LBD and it may give a clue about why he struggles with some things, like getting the two parts at the bottom of a zip to align.

 

[Dunroamin]

Sometimes it is just as well you do not know what "we" are thinking! 😂

 

[maggie6445]

Just curious, @maggie6445

Does your husband have LBD? Because with this they will often to the opposite to what they are trying to do eg, lean back when they are trying to lean forward, or push when they want to pull and their muscles often "freeze" when they are trying to move, but can't.

@canary , Thank you canary. His original diagnosis was Alzheimer's with possible Lewy Body . Scans were inconclusive , both scans showed some evidence of damage . Psychiatrist and I were going expecting vascular given his heart record but that area showed normal!! Must be all those heart meds🙂

A lot of his original symptoms fitted LB , misinterpretation of visual things, hallucinations and spatial awareness. Also loss of sense of time and money. His score was 64/100 on dementia test and I was surprised how poor it was. He was an intelligent man and obviously good at managing his problem!

He's having heart Investigations again as Dr isn't sure if his issues are heart or dementia related. He has a neurologist appointment September 30 for symptoms of Parkinson's. . Saw cardiologist this week and he's been taken off his beta blockers and to have a review of memantine.

His pulse rate dropped to 25 for several hours 2 weeks ago and spent a day in hospital, how is he still alive?

A lot of issues the medics are trying to pull apart to determine cause and best course of medication.

 

[canary]

Wow, @maggie6445 there's a lot going on there. It must be complex trying to juggle all of that lot

 

[maggie6445]

Have to say ,despite all his ongoing issues he's generally a smiley contented person . Even with the low pulse rate he presented as his normal! Sleepy but his normal Found on routine checks and sent to A and E

Juggling all the appointments is an issue for me. Thank heavens for a mobile phone with a calendar and reminder system 🤣

 

[Steve metz]

Still at early stages no big problems yet

 

[dcrowex]

Your responses make so much sense to me, thank you. I hate to be ill informed, but may I ask, what is "LBD"?
Thank you. Debbie

 

[maggie6445]

Your responses make so much sense to me, thank you. I hate to be ill informed, but may I ask, what is "LBD"?
Thank you. Debbie

Lewy Body Dementia. One of the many types of dementia which have slightly different symptoms and progression rates to start with but sadly, ends very similar to all dementias.

 

[Banjomansmate]

That's a really interesting observation. My husband has LBD and it may give a clue about why he struggles with some things, like getting the two parts at the bottom of a zip to align.

I have outdoor coats like that!

 

[Gosling]

Still at early stages no big problems yet

Welcome @Steve metz to this friendly and supportive forum. I hope being here will help with any support you may need. People here really do understand and want to help in any way they can. Take care.

 

[MatthewB]

I'm I'm read so many of this one times but I don't think I get it is is ask dementia people what they think? Or is ask other ones what dimension people think? Is ask on on got dimension talk but most is not to mention people to answer? I'm sorry if I'm maybe I'm not understand right I'm sorry but now I'm curology some curiosity oh this is Matt

 

[canary]

Hello @MatthewB
I think the person who started this thread was curious and anyone can answer. It is always good to hear answers from people who have dementia, because us carers can only guess.

 

[Collywobbles]

I'm I'm read so many of this one times but I don't think I get it is is ask dementia people what they think? Or is ask other ones what dimension people think? Is ask on on got dimension talk but most is not to mention people to answer? I'm sorry if I'm maybe I'm not understand right I'm sorry but now I'm curology some curiosity oh this is Matt

You’re very good at telling us how you feel Matt, which really helps us. And I hope it helps you, too. But many folks going through this, can’t explain what they are thinking, so we have to guess. We really do appreciate you sharing your thoughts and feelings so clearly. It is a privilege to have you talking to us. Thank you.

 

[David Joseph]

David Joseph said,
The problem is that what a dementia person is thinking is nearly impossible to tell, for several reasons. In the earlier stages it is obvious sometimes to find that the individual is having some mild difficulties in word-finding and expressing themselves intelligibly and without mistakes AND it is less obvious that the person is having difficulties in understanding what exactly is being said. At the moment, both of these symptoms have caused me difficulties, though sometimes this is intermittent, it comes and goes, and sometimes worsens. If my wife asks me to do something simple, I find it hard to comply correctly because I don’t understand what she is saying. She thinks I am hard of hearing but I know I am not. She has to point out what she means, where a certain object is, and what she wants me to do, but it’s like listening hard to something garbled and confusing. I want to help her physically, like lifting and moving items, which I can do, but frequently get it wrong by not knowing what her words mean. This is not selective, intentional or deliberate!!!
Unfortunately, expressive and receptive dysphasia can and often do worsen, sometimes unevenly, sometimes with good days and bad days and unpredictably.
Very sad.
David Joseph