Physioptherapy for person with dementia

[Travis95]

Hi all,

My mom who has dementia, had a fall about 3 months ago. Her forehead was very swelled when it happened, though the hospital checked it, there is no fracture, just a bit of hematoma which we were told not to worry about because it will go off by itself.

Background:
A few months later, it seems like she is gradually struggling to lift her head up straight. You can imagine it as her body stands straight, but her neck is bent towards the front, and her face looks down 90 degrees.
So instead of the neck being straight, facing forwards, her neck is bent 90 degrees she is looking at the ground all the time.

What the doctors said:
We have spoke different departments of the hospital. These are what we were told:

Orthopaedics:

1. They did full X-ray on her neck, and skull, totally no fracture at all, so referred her for physiotherapy.
2. We can't assess her nervous system because she has dementia, she can't tell us if she feels weird electrical shocks.

Geriatrics:

1. There are too many moving parts, we can't tell for sure. Could be true that the fall caused some muscle weakness and therefore physio is the way.
2. On the flip side it could be a genuine deterioration of her condition. Part of the brain responsible of keeping her head up is damaged, so there is no reason to do a physiotherapy.
3. We cannot tell for sure what happens if we stops it. We may not see any differences after doing physiotherapy because it is supposed to be a long recovery process. We don't know either maybe not doing it is going to make her neck worsen even quicker.

What we have been doing:
As advised by the Orthopaedics, we have been doing physiotherapy 3 times a day everyday. It is a very taxing routine for everyone at home because we need at least 2 person doing it. One to hold her because she resists very hard not to let us do it. The other forcefully twists her neck as part of the physiotherapy.
I am getting very anxious and worried doing it everyday because she screams loud every time we do it, sounded like a scream in agony.
I am well aware of her stress every time we do it. It is logical to believe this consistent stress will deteriorate her condition even faster.

What we have tried:
We have tried to calm her down to let her allow us to move her. It rarely works.
Neither we can speak to her to get her permission, she can't understand us anymore as this is a middle-late stage dementia

My questions:
Of course I will seek proper medical advice from our doctors, but it takes awhile before the next appointment, so I have to ask:

1. Is it even worth doing it now? It feels like it does more harm than good.
   We may or may not heal her neck problem, but we are definitely stressing her out everyday. We know stress is only going to worsen her dementia.
   
   
2. More or a physiological question: Is there any point if we forcefully do the physiotherapy on her?
   My understanding of a physiotherapy is to gradually stretch the stiff muscle back to its original flexibility.
   However in our case, it is like a tug-of-war with mom. As we are moving her neck one side to stretch her neck, she tries very hard to move her neck to the opposite side. She uses every part of her body trying to throw us away for forcing her.

 

[Melles Belles]

@Travis95
Please get in touch with your healthcare provider because this just doesn’t sound right forcibly moving someone's head.
As dementia progresses many people lose the ability to keep their head up and there chin seems to rest on their chest. This happened to both my dad and my FIL and there is very little you can do to solve it. It is disease progression.

 

[Jessbow]

She screams when you do it- i'd not do it. it maybe that its the way she is telling you it hurt.
Will see look up if you show her something /to watch TV...whatever? If so i would guess she is choosing to hang her head

She must be terrified- hold me and someone twist my head against my will? no thank

 

[Travis95]

@Travis95
Please get in touch with your healthcare provider because this just doesn’t sound right forcibly moving someone's head.
As dementia progresses many people lose the ability to keep their head up and there chin seems to rest on their chest. This happened to both my dad and my FIL and there is very little you can do to solve it. It is disease progression.

I see. that is the whole reason why I brought this up, to discuss it with people who may have experienced the same

 

[Travis95]

She screams when you do it- i'd not do it. it maybe that its the way she is telling you it hurt.
Will see look up if you show her something /to watch TV...whatever? If so i would guess she is choosing to hang her head

She must be terrified- hold me and someone twist my head against my will? no thank

I dont think it hurts. Because when the physiotherapist does it in the clinic, she is very calm, just let the doctor do whatever she wants. Could it be the setting, she realize its a clinic and it is safe?

We were suggested to do "play therapy", where we kind of play with her with a ball, throwing it to her left and right making her catch it, this way she will sub-concsiously move. This however works only a tiny bit, most of the time she move her eyeballs rather than her neck.

I can imagine too why she is screaming, she probably things someone is trying to strangle her. But I am really unsure what can we do about it. What are the long-run implications if we skip the physiotherapies?

 

[Jaded'n'faded]

Please don't do it! You're not going to fix her!

There could be all sorts of reasons why she's looking down with neck bent - injuries from the fall, progression of her dementia, etc. It could just have become a habit. But many people in the later stages start to lean or bend forwards.

Your forced neck exercises are clearly causing your mum a lot of distress and I'm not surprised. I think most people would react in a similar way if held tight and subjected to forced neck twisting!

​

We don't know either maybe not doing it is going to make her neck worsen even quicker.

Let's hope you're not making it worse.

Talk to the medics. You may have to accept this is just the way she is now.

 

[Rosettastone57]

I agree with others. There comes a point when some things in dementia aren't going to get fixed. My mother in law had physio for a short period for a leg problem but it was soon abandoned after she refused to comply with instructions

 

[KP1985]

My dad (68) is in a dementia care home, he's in the final stages of the disease. He has also recently developed this bent neck and he bends forwards alot when sitting too so his nose is touching a table. The only way he can look at you is if you crouch down to get in his eyeline. Ive been googling today to see if it's dementia related, meds related or could be something like Parkinsons? I really dont know what's best as it's clearly causing dad pain. when we lies down it doesn't straighten but at least some of the gravity strain can be taken out of it. I think it's part of the disease but if you find out anything please update the post as I'll watch this thread, I'm interested to know more about this too.

 

[Travis95]

I agree with others. There comes a point when some things in dementia aren't going to get fixed. My mother in law had physio for a short period for a leg problem but it was soon abandoned after she refused to comply with instructions

I see. Was it the doctor's advice to stop it?
I think I am having slight challenge here because the Orthopaedics doesn't necessarily understand the issue with dementia patients. Maybe it is a very rare case for them, they don't understand why mom doesn't want to comply, and perhaps encourage us to continue.

I get it, ignoring dementia, it is best to continue. However looking at the bigger picture, I am increasingly worried - even if we did fix her neck, at what cost?

 

[Travis95]

My dad (68) is in a dementia care home, he's in the final stages of the disease. He has also recently developed this bent neck and he bends forwards alot when sitting too so his nose is touching a table. The only way he can look at you is if you crouch down to get in his eyeline. Ive been googling today to see if it's dementia related, meds related or could be something like Parkinsons? I really dont know what's best as it's clearly causing dad pain. when we lies down it doesn't straighten but at least some of the gravity strain can be taken out of it. I think it's part of the disease but if you find out anything please update the post as I'll watch this thread, I'm interested to know more about this too.

This was exactly what we faced!

At the worst time, she can't eat properly. Her face is so low that she kind of burried her face on her food, of course we stopped it immediately.

At the moment, we are using 2 neck supports. Both are intended for people with neck injury.
The first one (A) is a cushion one meant for general neck/muscle injury.
The other one (B) is a more heavy duty one meant for fractures around the neck.
With A, she still bends her neck to some degree because the cushion can be pressed. We let her wear this when we need to bring her out involving meals.
With B, it does a better job at holding her head. However this one is very rigid, she cant chew with it. It gets uncomfortable too, she attempts to break it open.

In terms of sleeping, she used to scream loudly every night when we lay her onto the bed. We noticed it was the sudden bent of her neck, from bent to straightened, so we held the back of her head to lay her very very gently.
We started the physio, at least she doesn't scream anymore when we lay her down.
I really want to say physio did help,
But the cost of it is her suffering 3 times everyday when we do her physio. So it is really a dilemma whether to stop it or not.

One thing that really helped us for a short while was applying Deep-Rub Ointment on her neck before her sleep. It did miracles on her sleeping quality, but the miracle lasted only for weeks, and then the effect is wearing off even with the rub.

 

[Rosettastone57]

I see. Was it the doctor's advice to stop it?
I think I am having slight challenge here because the Orthopaedics doesn't necessarily understand the issue with dementia patients. Maybe it is a very rare case for them, they don't understand why mom doesn't want to comply, and perhaps encourage us to continue.

I get it, ignoring dementia, it is best to continue. However looking at the bigger picture, I am increasingly worried - even if we did fix her neck, at what cost?

This was a referral from the GP who was aware of the dementia. My mother in law had a history of not complying with professionals. The physio tried to get her to complying with instructions but she either couldn't understand or just point blank refused. As far as she was concerned there was nothing wrong with her. The physio took the view that with the time taken on a home visit, there were more needy patients out there to deal with. A view I fully supported.

 

[Jessbow]

At the moment, we are using 2 neck supports. Both are intended for people with neck injury.
The first one (A) is a cushion one meant for general neck/muscle injury.
The other one (B) is a more heavy duty one meant for fractures around the neck.
With A, she still bends her neck to some degree because the cushion can be pressed. We let her wear this when we need to bring her out involving meals.
With B, it does a better job at holding her head. However this one is very rigid, she cant chew with it. It gets uncomfortable too, she attempts to break it open.

Are these hospital issue or somethig you have purchased?

 

[Travis95]

This was a referral from the GP who was aware of the dementia. My mother in law had a history of not complying with professionals. The physio tried to get her to complying with instructions but she either couldn't understand or just point blank refused. As far as she was concerned there was nothing wrong with her. The physio took the view that with the time taken on a home visit, there were more needy patients out there to deal with. A view I fully supported.

I see. Totally understandable in the big picture, they can still help someone else.
As a family member though, how did you accept the fact that there is nothing you can do about it?.
I always ask myself why am I so desperate to fix her neck? What do I get out from this?

 

[Travis95]

Are these hospital issue or somethig you have purchased?

I bought them myself on a walk-in pharmacy, and the heavy duty one from e-commerce websites. It is very cheap because it comes from China.

 

[Rosettastone57]

I see. Totally understandable in the big picture, they can still help someone else.
As a family member though, how did you accept the fact that there is nothing you can do about it?.
I always ask myself why am I so desperate to fix her neck? What do I get out from this?

My mother in law's response wasn't out of the blue. She had pre existing mental health issues way before the dementia diagnosis so I expected her to ignore the physio . She had been difficult for the last 30 years ,so I didn't experience a crisis of "how do I accept the situation ?" It was just the way it was. My mother in law was a self absorbed unpleasant person who physically and mentally abused my husband and his sister throughout childhood and into adulthood. As a family we made sure she had the best care ,but it was out of a sense of duty. If she couldn't be helped further, then so be it. Sounds callous perhaps, but not every family is a loving one

 

[Jaded'n'faded]

I always ask myself why am I so desperate to fix her neck? What do I get out from this?

Perhaps because you can't fix her dementia?

Dementia is so challenging, causes so many heart-breaking symptoms and behaviours and there's nothing we can do. Perhaps you see the neck thing as something that maybe - just maybe - you can fix, so you're trying your absolute best to do that because at least it would be something...

Completely understandable. I wish I could give you a magic wand.

 

[helpingpeggy]

Hello, I am a physiotherapist. It seems very unusual to advise anyone to forcefully twist or move an older person’s neck: I would be very concerned about causing more damage. Can you go back to the physiotherapist who advised that this be done and inform them of your relative’s response?

 

[Travis95]

Perhaps because you can't fix her dementia?

Dementia is so challenging, causes so many heart-breaking symptoms and behaviours and there's nothing we can do. Perhaps you see the neck thing as something that maybe - just maybe - you can fix, so you're trying your absolute best to do that because at least it would be something...

Completely understandable. I wish I could give you a magic wand.

I agree.
I think one day if I look back, at least I dont feel guilty because I know I tried what I think would work.
If I don't do anything now, I will probably have to live with the guilt for not trying

 

[Travis95]

Hello, I am a physiotherapist. It seems very unusual to advise anyone to forcefully twist or move an older person’s neck: I would be very concerned about causing more damage. Can you go back to the physiotherapist who advised that this be done and inform them of your relative’s response?

Hi helpingpeggy,

I am very excited to hear from a physiotherapist itself!
We are definitely going to speak to our physiotherapist about the situation. Before doing that though, I foresee all they can do is to layout the fact that there is no guarantee the exercise will fix it. But if we don't do anything, it is definitely not going to be fixed. And then they will let us make the final call.

To make the final call, I need to weigh the pros and cons of fixing her neck. What benefit do I achieve if I do fix it? Do I cause even more damage to her dementia generally?


Also a physiobiological question I would like to ask you, a physiotherapist.
My understanding of a physiotherapy is to gradually stretch the stiff muscle back to its normal flexibility.
But if the patient doesn't even try themselves, instead go against it, go the opposite direction.
Does the therapy even work at all this way? Even if we forcefully twist the neck, will it regain the flexibility?

If the answer is no, forcing it like that doesn't meet the objective of regaining flexibility, then there is literally zero benefit of doing it. The action purely does damage.

 

[helpingpeggy]

To be honest I have never (in 35 years of being a physio) heard of people being advised to forcefully twist an older person’s neck with the level of force that you describe having to use. It may be that something has been misunderstood between what was advised and what is being carried out. Or it may be that I’m misunderstanding what you’re describing.
I can only advise that you go back to the physio who gave this advice and ask them to clarify things, as soon as you possibly can.