Saturday, 26 September 2015

Dementia death

A couple of times I've come across statements online to the effect that deaths from dementia are uniquely horrible. I know some people with dementia do, sadly, die in pain and torment. But many do not. I've written here about my mum's 'dementia death'. I have also read many accounts of the dying moments of people with dementia and some of them clearly just faded away. Indeed, some of them die in their sleep just as some people without dementia do,

People have also stated that what makes the death of a person who has dementia uniquely awful is the way in which loved ones lose the person 'bit by bit'. Of course, this is true in one sense but it's also true that some families find that they can still find and communicate with 'the essence of the person' right up until their death,

It is also true that there are many other truly horrible ways to die. I do not need to spell them out here.

So whilst I understand that the last days or hours of a loved one dying from dementia can sometimes be truly dreadful, I don't see that there is anything to be gained from expecting it to be or claiming that it always is.

Monday, 14 September 2015

The global impact of dementia (graphically described)

When There's No Amyloid, It’s Not Alzheimer’s

This is the heading to a fascinating article in the latest Alzforum weekly newsletter. Here's a link to the article:

And the first paragraph gives you the gist:

Reporting in the August 24 JAMA Neurology online, researchers led by Eric Reiman at Banner Health in Phoenix, confirm what others have suspected from PET imaging, namely, that as many as one-third of the people clinically diagnosed with mild to moderate Alzheimer's disease do not meet criteria for significant amyloid accumulation in the cerebral cortex. Reiman and colleagues came to this conclusion after examining brain tissue postmortem—the gold standard for assessing amyloid burden. The finding puts the kibosh on the idea that some PET scans are negative because amyloid ligands bind poorly to particular forms of amyloid in some AD patients. It also reinforces questions about the accuracy of clinical diagnoses of AD and leaves the field struggling to explain what causes dementia in these amyloid-negative individuals. This promises to be an intense area of investigation, said Reiman.

Articles like these are often difficult for a lay person to understand. But from what I can understand and already know I would say the title is begging the question a tad. It should be no surprise that many people diagnosed with AD are found post mortem not to have amyloid accumulation in their brains. But surely this could be because either, as the title says, people without the amyloid must have a different disease or different diseases OR because, as other research suggests, amyloid accumulation is not as significant in AD as is so often claimed.

Sunday, 13 September 2015

Still trying to get S walking

We have had a second visit from the private neuro physio. She noticed some improvements in S's movement and balance. The main problem is still that the bent knees aspect of the 'Parkinson's gait' stops S from standing up properly and this is not helped by her understandable lack of confidence after so long off her feet. This is something that might be helped by increasing the dosage of the Sinemet (Parkinson's med), When S first took it about a year ago, the improvement in the gait was noticeable. I have spent a lot of time chasing the Parkinson's clinic for a home visit to assess and prescribe. They do do home visits, it turns out, but it might be a long wait.

In the meantime, the physio was all in favour of us getting S out and about once we are downstairs and have a wheelchair, and she is confident that S has the strength to allow her to be moved from the wheelchair to a car seat. She mentioned a transfer board. If this proves possible it will open up new horizons for us even without S being able to walk. She had some helpful suggestions about ways to make transfers more efficient and safer. When she had gone, K and I transferred S from chair to bed using the suggested technique and S actually took a couple of steps during the process. She was fully supported by us but still this is more than we've seen for quite a while.

We've agreed that she won't come again at least until we have the wheelchair, in 3-4 weeks. I do feel that she is reluctant to try too much for fear of injuring S and is also very reluctant to do things that cause S to be agitated. But the agitation she is seeing is very minor from our perspective. She repeated something that she has said before which is that we may find that with increasingly regular activity S may just start to to walk. I'm sceptical as S was needing a lot of support to get started even before the 'event'. But I do feel that if we are a little more active in supporting her she may eventually overcome her fear of being on her feet, which is currently a major factor.

So there is still some hope.

Wednesday, 2 September 2015

Trying to get S walking again

My biggest disappointment is that efforts by a physio to get S walking again (or I should say to keep walking as I was getting her to walk a few paces for some weeks after the 'fit'), which has been my number one priority, turned out to
be spasmodic and half-hearted. On three occasions I saw him and his assistant helping her to walk and once she walked round in a tight circle in our living room (a difficult manoeuvre) holding onto her walker/travel chair whilst they had their hands at the back for safety. But then we didn't see him for nearly a week and we were back to square one. It seems blindingly obvious to me that the only way to help her would be very regular visits  -  maybe every other day  -  and the resources just aren't there to do that. A handful of further visits followed though he ducked out after another week long absence and was replaced by a couple of less-qualified people. Then we were told that, as they were a short-term service, they could not continue. No NHS physio who saw her was a neurological physio (trained in helping people with neurological conditions) which could account for the main man's official report that he had stopped because S 'could not follow instructions'. There could of course be two reasons for that - Alzheimer's Disease and Parkinson's Disease.

Eventually I started investigating private neurological physiotherapy but it is difficult to find suitably qualified people who do home visits. However, we finally found one who came last week for a very expensive initial assessment. Although, understandably, she made no promises, she was impressed with S's strength and the fact that there has been very little muscle wastage in her little- used legs. It was reasonably successful I felt as did our wonderful new main carer K. The physio was pleasant and seemed to get a good grasp of the situation. The biggest problem seems to be that when S is up on her feet, with help, she is always leaning backwards. We have to work on this. One exercise is to have her sitting on the edge of a chair and encouraging her to keep leaning forward (which she can do) to hold onto something. We will also continue with the various passive exercises we have been doing, mainly with her legs. Her hips are very stiff and the physio said that we should get her out onto a chair for several hours a day and that the hospital bed isn't doing her any favours.

When we move back downstairs (which will be soon now), it will be easier to move about. She can have breakfast in the kitchen/diner, sitting up at the table as she did pre the 'event'. Then she can sit on a comfortable chair or sofa in the living room.

The physio is coming back in a week's time. Both K and I and I feel S is continuing to make progress and is taking the initiative and weight bearing to a greater extent when we move her from the bed to the commode etc..

Tuesday, 1 September 2015

Drugs to avoid

I came across a link to this site online. I think everyone who cares for someone living with dementia and every person living with dementia who is still able to take responsibility for their own medication should know about this. It's a list of drugs which which are best avoided by the elderly and, particularly, people living with dementia: