First time to post, though I do have to stop and say thank you to everyone who has posted their stories and experiences on this board. It has been a refuge of sorts for me as I try to sort out and deal with my father's journey with dementia.
I was curious about whether anyone has any experience or advice regarding the efficacy or procurement of physical therapy or massage in the late stages of dementia? Types of services to consult? Successes or failures? Any advice at all?
Background: My father is late-stage dementia (likely Dementia with Lewy Bodies), currently residing in a dementia-focused AL facility. During a recent bout with an unknown physical assailant (perhaps infection?) he went from a FAST 6e to 7d. The administered antibiotics were helpful (thus the infection assumption), and he recovered decently, back to about a FAST 7a, although he has lost ambulation.
We are, of course, struggling with weight loss and weakness, but we were hoping to see over the course of the next few weeks whether or not we can ride the wave of his groundswell recovery to see him regain an ability to walk. We aren't heart-set on it necessarily; I think, at this point, it's more about making longer-term (1-3 month) plans for his care than anything else.
So, back to the point: when we received the referral for home health PT services, we were excited, initially. We were disappointed, however, to find that they wanted to visit him once a week for 30 minutes; they say they are afraid of wearing him out, which we can understand, but at the same time, we feel that 30 minutes once a week is not sufficient to encourage any possibility of restoring him to walking condition. To our credit, since his illness, he has gone from an inability to self-feed to now feeding himself again, and he keeps trying to stand from his chair. Whether the will is there but not the way (too weak), we don't know, but we want to give him the best chance.
At the very least, we want someone to help him with limb movement, stretching and basic exercises for circulation, etc. Local massage seem uncomfortable coming to the AL where he resides (and dealing with an elderly man with dementia)... so who do we call? Is there a terminology I'm missing? A service I'm unaware of? This is probably very simple, so I'm hoping others in our shoes have gone through this and have an answer about who we might consult or call.
Apologies for the long post. First time dealing with all of this, and I (and my sibling) are really confused.
Last edited by tankerraid; 07-19-2011 at 10:27 AM.
Reason: del extra text
Jennifer... you can try PT if you want to but please do not put much faith in the possibility that he will regain the ability to walk independently. Any stressful situation or medical condition can set them back in the disease. They will come back but usually not to the level they were before. Or that is what my experience has been. We did have PT for Dad a number of times. To benefit from physical therapy the loved one needs to be able to cooperate and to have some recent memory to learn what they need to teach him. What I did find was the PT was good for flexibility and strength. Once Dad lost the ability to walk it didn't give him back that ability. That is when we stopped PT totally. With Mom she was having problems with her center. She has been leaning to one side when she walked. We tried PT, three time a week, and it made no difference. It was finally assumed that it was the disease process that is affecting her ability to stand vertically. In that case there is no PT that will fix it. It will do not harm to try but just don't have expectations of your father regaining his ambulation.
As for message therapy... touch is a very important human connection, even with late stage dementia. Rather than message therapy, it is usually called touch therapy and is a bit different from the message therapy that we see at the strip mall message spa. They need to be trained in dealing with the elderly dementia patient as well as the techniques of message. There is such a group here and I have spoken with them several times. They recommend starting small with a foot message, hand message, scalp message, or other localized message. See how the loved one responds to different touches and then use what is best for them. Mom responds well to foot messages and scalp messages. Check with your physical therapist, care facility personnel, doctor, elder omnibus, check the web, or other elder resources to see if there is elder touch therapy message in your area.
Thank you Deb, that is very helpful. It's hard to balance accepting the course of the disease with trying to give him every chance to maintain some semblance of life quality. Knowing when to try and when to move on is incredibly hard.
I am going to look into the touch therapy for sure. I figured there was a term for what we were looking for, and that's the one!
Again, thanks for taking the time to reply.
I know exactly what you mean Jennifer. It would be nice if there was something we could to to prevent loss of ability or to give them back what they have loss. If it does no harm by trying it's ok to try just be aware of the frustration that it may cause them if it is not successful.
I am a firm believer in touch therapy. Mom is a chronic wanderer and those foot messages are the few times she will sit still without trying to get up. I have started doing them myself. There is a book "Comfort Touch" by Mary Rose that is good. It's a text book and a little pricy but has some good information.
Just know we here on the health board do understand
Deb has said it well. I want to share with you about my FIL's walking situation.
Back in late 2007, he got overdosed on caumadin (the blood thinner.)
The ER saved him. He came home with a wheelchair and PT. The PT came almost every week until he gained his strength.
However ever since then, he had used a cane until this May.
He had used the cane for at least 3 years and 4 months.
He now has stage 6/7 Alzheimer's. Back then he was probably in moderate stage.
My FIL now needs a walker and he can barely support himself - he is too weak to get up and sit down (he does it slowly and has no perception about where the chair is behind him.)
My experience is that the patient will drop a bit and come back a little, but he will not be as same as before.
So maybe your Dad can try a cane. However, if he is weak on the walker and has late stage, don't expect him to walk as normal as before.
This is how dementia declines - it drops a bit and climbes back a little but never comes back to the original point. Each time he declines a little bit or a bit, he would be stable for a while like 6 months or a year or until the next trauma...
Quality of life does not mean total cure or healing. It is more for comfort care. We always hope the elder does not decline so fast and so we are happy when he comes back a little. But my FIL never came back to the old self.
The good thing is the decline is quite slow. However, evetually my FIL is reaching stage 7...
He is on pureed food now due to swallowing problem (it is prevention now.)
It is heartbreaking to see them decline, but at least it is slow.
Take care and I hope your Dad will recover better.
Deb, I never heard of touch therapy. Maybe we will look into it.
My mom too has gone through this. She stopped walking altogether last January. She had PT and they would come to her a few times a week...but when she finally stopped walking, the PT stopped. She has been wheelchair bound since. Your father is in a dangerous phase...easy to fall and hurt himself.
When mom finally stopped walking it was almost a relief...I was always worried about her breaking a hip. She had already broken one and it was a nightmare for her. The problem with being wheel chair bound is the risk of pressure sores. If I had known more about it I would have been more vigilant because mom now has a doozy on her tail bone and it is only getting worse. You just have to make sure, when the time comes for him, that they don't let him sit for hours at a time. Mom's problem came when we found out the evening aids were letting her sit til 10 at night instead of getting her into bed by 7 or 8. She was quiet so they dealt with the more difficult ones first, leaving her to last.
Touch therapy. We do it ourselves...plus we put cream on her arms and legs 5 days a week...and we massage her hands and feet. We try to stay away from her face or head because as soon as we touch there she falls asleep!