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.
Saturday, 26 September 2015
Monday, 14 September 2015
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:
http://www.alzforum.org/news/research-news/when-theres-no-amyloid-its-not-alzheimers?utm_source=Alzforum+Weekly+Newsletter&utm_campaign=0372e368ea-September_14_2015_Newsletter&utm_medium=email&utm_term=0_944a562dd7-0372e368ea-91738709
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.
http://www.alzforum.org/news/research-news/when-theres-no-amyloid-its-not-alzheimers?utm_source=Alzforum+Weekly+Newsletter&utm_campaign=0372e368ea-September_14_2015_Newsletter&utm_medium=email&utm_term=0_944a562dd7-0372e368ea-91738709
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.
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..
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:
http://www.healthcare.uiowa.edu/minimedicalschool/documents/BeersCriteriaPublicHandout041012.pdf
http://www.healthcare.uiowa.edu/minimedicalschool/documents/BeersCriteriaPublicHandout041012.pdf
Saturday, 29 August 2015
50,000 page views
Today the blog has achieved 50,000 page-views since it began. I wanted to express my heartfelt thanks to all readers, wherever you are in the world.
If you have read my recent posts you will be aware of the recent difficulties that have made it impossible for me to post as much as I would like to. Things are beginning to settle down a little and I hope to resume something like 'normal service' very shortly.
If you have read my recent posts you will be aware of the recent difficulties that have made it impossible for me to post as much as I would like to. Things are beginning to settle down a little and I hope to resume something like 'normal service' very shortly.
Sunday, 9 August 2015
Will the NHS fund care?
This is a post mainly about the UK but may have some interest for readers in other countries.
We know that in the UK care funding is means-tested and large numbers of people have to pay for their care, even though they need care because they have a disease.
However, if a person's needs and the consequential risks are sufficiently severe, the NHS may fund care costs - regardless of their income.
We are in the process of trying to get this funding for what is called Continuing Health Care (CHC) for S. We have been encouraged to believe that she will get it. This surprises some people because it is often thought that you have to have very challenging behaviour (e.g. aggression, paranoia) in order to get the funding. You don't, though many people are funded mainly or partly because of their challenging behaviour.
There's a very informative video here, for people who wish to explore this area further:
https://www.youtube.com/watch?v=HrpFLLwGqhs
It lasts about an hour so I intended watching it in 'bite-sized chunks' but found it so engrossing that I watched it right through and took notes!
We know that in the UK care funding is means-tested and large numbers of people have to pay for their care, even though they need care because they have a disease.
However, if a person's needs and the consequential risks are sufficiently severe, the NHS may fund care costs - regardless of their income.
We are in the process of trying to get this funding for what is called Continuing Health Care (CHC) for S. We have been encouraged to believe that she will get it. This surprises some people because it is often thought that you have to have very challenging behaviour (e.g. aggression, paranoia) in order to get the funding. You don't, though many people are funded mainly or partly because of their challenging behaviour.
There's a very informative video here, for people who wish to explore this area further:
https://www.youtube.com/watch?v=HrpFLLwGqhs
It lasts about an hour so I intended watching it in 'bite-sized chunks' but found it so engrossing that I watched it right through and took notes!
Friday, 17 July 2015
Maybe it wasn't a fit after all
Some weeks ago I was trying to get information from the Parkinson's Disease consultant about the possibility of the fit being caused by the medication (fits are a possible side-effect of the Sinemet S takes). I was eventually put through to Parkinson's nurse who was thorough and very helpful. After I'd described the 'fit' and answered a lot of questions she said she would put money on it not being a fit but being the result of low blood pressure causing loss of consciousness. It's apparently something that's common in Parkinson's Disease and often happens 'on the loo'. S had actually finished on the loo but was sitting there and may have been straining very shortly before the incident. The rigidity that I witnessed (as opposed to any real shaking) was a big clue for her. The fact that S then slid down into a very uncomfortable position where her breathing was somewhat restricted wouldn't have helped. But her quick recovery, in terms of her vital signs, would also suggest that her explanation is at least a strong possibility.
Two additional factors that may support the theory: S has always had low blood pressure and another side-effect of the medication is - you've guessed it - low blood pressure. Whether this theory helps us at all in the long run remains to be seen, but it does seem that this loss of consciousness is less serious than any kind of fit.
Two additional factors that may support the theory: S has always had low blood pressure and another side-effect of the medication is - you've guessed it - low blood pressure. Whether this theory helps us at all in the long run remains to be seen, but it does seem that this loss of consciousness is less serious than any kind of fit.
Still here
I think I've just had the longest break from this blog since I started it. The reason is very simple. I've been too busy. During the weeks since the 'fit' we have had an astonishing number of different people coming into the house - sometimes I've been showing another one or two in (they often come in pairs) whilst showing others out. They are all trying to help us, which is appreciated, though some of them have let us down and I start to think it would have been better if they had never raised our hopes.
We have also had a stairlift installed. This has enabled us to get back to our bedroom upstairs whilst we are having a new bathroom installed. That project was started very quickly and will very soon be finished - at least that's what the builder tells me every day! The closer it gets to being finished, the slower the work-rate seems to become. When it is finished, we can plan our permanent move downstairs to a sitting room which has to accommodate S's 'hospital bed', a single bed for me and a hoist of some kind.
I hope to get back to posting more regularly but it's so hard to find the time.
We have also had a stairlift installed. This has enabled us to get back to our bedroom upstairs whilst we are having a new bathroom installed. That project was started very quickly and will very soon be finished - at least that's what the builder tells me every day! The closer it gets to being finished, the slower the work-rate seems to become. When it is finished, we can plan our permanent move downstairs to a sitting room which has to accommodate S's 'hospital bed', a single bed for me and a hoist of some kind.
I hope to get back to posting more regularly but it's so hard to find the time.
Thursday, 25 June 2015
How to create an invalid
I am very disturbed by the way things are going following S's fit. Already, less than three weeks since it happened, she is being treated like an invalid. No serious attempt to discover why she has practically lost her mobility has been made. It took two weeks and a very determined District Nurse to get her x-rays which have finally ruled out any fractures to the hips or pelvis. The District Nurse's intention then was that S should receive intensive help from physiotherapists to try and recover at least some of the mobility that she had before the fit when she was capable of walking 5 miles a week. But no-one is really interested in doing this. It seems to me that this is a result of the widespread if unspoken assumption that there is no point in wasting resources on someone with dementia.
We now have two daily visits from pairs of 'carers' who are not seeing an individual person who still has some abilities but a body that is incapable of doing most things. The less S has to move or be moved the better, as far as they are concerned. There is talk of hoists, hospital beds and commodes which she can be wheeled around on. Because they are now involved, I can see that, even though we will soon regain access to two bathrooms (a new one we are having put in downstairs and the original one via a stair-lift) the regime of minimal movement and bed baths will be hard to move on from. Ironically, I'm still the one who has to do any lifting and moving because we do not have the 'right equipment' yet.
An assessment by someone who gave no evidence of having any particular expertise resulted in a decision, it seems, that the mobility issue was probably a result of what was going on in the brain - now there's a surprise - rather than any physical problems with parts of the body. The conclusion was therefore that physiotherapy would not help. But, of course, as everybody should know, the brain and the body are intimately interconnected and it's quite possible that repeated physical activity of any kind could help to restore some of the previous connections that may have been damaged. One of the things that perplexes me and the district nurse is that after the fit S was able to use stairs and the loss of mobility occurred in the evening of the day after the fit. No-one can explain this, and, worse, no-one is remotely interested.
Once before, with my help, my brave and determined wife re-emerged from a total meltdown, which also involved mobility - in addition to extreme agitation and aggression, paranoia, and torment - to become again a person who in her own ways got something out of life and was as physically active as she was able to be. I want to try and help her to do something like that again. But 'they' seem bent on creating an invalid. That is their expertise. And what an appropriate word that is, by the way. It's no wonder that they stopped using it. It gives the game away.
We now have two daily visits from pairs of 'carers' who are not seeing an individual person who still has some abilities but a body that is incapable of doing most things. The less S has to move or be moved the better, as far as they are concerned. There is talk of hoists, hospital beds and commodes which she can be wheeled around on. Because they are now involved, I can see that, even though we will soon regain access to two bathrooms (a new one we are having put in downstairs and the original one via a stair-lift) the regime of minimal movement and bed baths will be hard to move on from. Ironically, I'm still the one who has to do any lifting and moving because we do not have the 'right equipment' yet.
An assessment by someone who gave no evidence of having any particular expertise resulted in a decision, it seems, that the mobility issue was probably a result of what was going on in the brain - now there's a surprise - rather than any physical problems with parts of the body. The conclusion was therefore that physiotherapy would not help. But, of course, as everybody should know, the brain and the body are intimately interconnected and it's quite possible that repeated physical activity of any kind could help to restore some of the previous connections that may have been damaged. One of the things that perplexes me and the district nurse is that after the fit S was able to use stairs and the loss of mobility occurred in the evening of the day after the fit. No-one can explain this, and, worse, no-one is remotely interested.
Once before, with my help, my brave and determined wife re-emerged from a total meltdown, which also involved mobility - in addition to extreme agitation and aggression, paranoia, and torment - to become again a person who in her own ways got something out of life and was as physically active as she was able to be. I want to try and help her to do something like that again. But 'they' seem bent on creating an invalid. That is their expertise. And what an appropriate word that is, by the way. It's no wonder that they stopped using it. It gives the game away.
Wednesday, 10 June 2015
S has had a fit
This was the first time I've seen anything quite like this. I had left her sitting on the the toilet waiting for the mobile hairdresser. When I went back in after a few minutes she was still sitting on the loo but twisted up. She looked as if she was wringing her hands and she looked very agitated. She was totally unresponsive. Also her breathing and a little bit of coughing suggested she might start to vomit.
Then she slipped down to the floor. I couldn't stop her but was able to stop her banging anything in the process. She was in an uncomfortable sitting position against the radiator but I was reluctant to move her in case we ended up in a worse position. Her breathing sounded quite laboured and gurgly so I decided to call 999. It wasn't considered 'life threatening' so it took a while before an ambulance became available during which time the operator stayed on the line though I can't say she said much. She asked but I was unable to say whether S was asleep or unconscious. Then a 'volunteer first responder' arrived. Finally, the ambulance. By this time things were looking a little better. S opened her eyes a bit (she normally has them closed for much of the time).
They decided on the Accident and Emergency department at our large local hospital. S's daughter had arrived by now which was great and she followed us to the hospital. In the ambulance S looked better still, holding her head up normally, not back on the pillow and with open eyes for much of the time.
I won't bore you with a full account but in the 5 or so hours we saw many different people in a variety of uniforms, most of whom did a little bit (mostly tests) then went away. Blood tests suggested she might have a slight infection. They gave her a chest x-ray which was fine and talked of testing her urine but dropped this idea, probably because they realised it would not be easy. Blood pressure, pulse etc were all in the normal range from almost the time we got there.
Eventually, they said she could go home but we could contact them if there were any further problems. I was fine with that.
She is not back to normal mobility wise yet but can stand and walk. She's eating normally. The stairs are more of a challenge than usual so we stayed upstairs on the first evening and had to stay downstairs yesterday as she just couldn't get up the stairs.
Then she slipped down to the floor. I couldn't stop her but was able to stop her banging anything in the process. She was in an uncomfortable sitting position against the radiator but I was reluctant to move her in case we ended up in a worse position. Her breathing sounded quite laboured and gurgly so I decided to call 999. It wasn't considered 'life threatening' so it took a while before an ambulance became available during which time the operator stayed on the line though I can't say she said much. She asked but I was unable to say whether S was asleep or unconscious. Then a 'volunteer first responder' arrived. Finally, the ambulance. By this time things were looking a little better. S opened her eyes a bit (she normally has them closed for much of the time).
They decided on the Accident and Emergency department at our large local hospital. S's daughter had arrived by now which was great and she followed us to the hospital. In the ambulance S looked better still, holding her head up normally, not back on the pillow and with open eyes for much of the time.
I won't bore you with a full account but in the 5 or so hours we saw many different people in a variety of uniforms, most of whom did a little bit (mostly tests) then went away. Blood tests suggested she might have a slight infection. They gave her a chest x-ray which was fine and talked of testing her urine but dropped this idea, probably because they realised it would not be easy. Blood pressure, pulse etc were all in the normal range from almost the time we got there.
Eventually, they said she could go home but we could contact them if there were any further problems. I was fine with that.
She is not back to normal mobility wise yet but can stand and walk. She's eating normally. The stairs are more of a challenge than usual so we stayed upstairs on the first evening and had to stay downstairs yesterday as she just couldn't get up the stairs.
Such events are always shocking. I know things might get worse again but at the moment I'm fairly hopeful that this might just be a one-off. She has been prescribed antibiotics for the suspected UTI but unfortunately the first med prescribed made her vomit so I'm hoping to get a replacement by this evening.
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