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:

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 Sue 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'. Sue 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 Sue 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: Sue 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 Sue'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.

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.

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.  

Friday, 29 May 2015

Do what works

Online, someone asked how best to help their partner who has dementia. All kinds of approaches are explained and championed. How do you decide what to do for the best?

I would say be pragmatic. Do what works for you and your partner. You have to give it a fair trial of course, no point in giving up the first time it goes wrong.

The most important thing to remember when thinking about all the issues around caring for someone with dementia is 'everybody is different' . People often pay lip-service to the truth of this statement then these same people go on to make sweeping generalisations about people with dementia. We can certainly learn from people in similar situations, but we can't just treat the person we care for exactly as some guru, authority figure or other genuine carer tells us to. Well, we can, but if we do we are setting ourselves up for failure and frustration.

Sunday, 24 May 2015

Carer's dependency

There is a kind of dependency that carers can experience. Just as the people we care for depend on us, so we can come to need them, however much we would like to be able to get away and do just what we want. So even if/when we know they are being looked after, probably well, we are so used to having them in our lives with all the difficulties and, if we're lucky, still some kind of communication and satisfaction that we are, to an extent, coping that it's very difficult to 'forget' about our loved one and we may even start to feel anxious, even if we are doing something we really want to do. The longer I'm away from S the stronger this feeling becomes.

Saturday, 23 May 2015

And another article worth a look

This is an article about recent research into the supposed link between beta amyloid and Alzheimer's, still the predominant focus in the search for dementia drugs that might actually work.

It seems to me to contain some bizarre explanations as to why the researchers' investigations do not produce exactly the results which they have convinced themselves are inevitable.

This is perhaps the best example, but you will see several others if this interests you enough to try to follow the article:

'previous trials of anti-amyloid drugs on people with dementia failed because their brains were already too damaged or because some patients, not screened for amyloid, may not have had Alzheimer’s.'
So I wonder what disease it was that was wrecking the lives of those patients who had been diagnosed with AD but did not screen for amyloid?

Tuesday, 19 May 2015

Some exciting research

This is an interesting article which I found on AlzForum, an excellent if very challenging (to the non-professional), site.

These two paragraphs give the background:

Cognitive reserve was originally defined as the extra protection against cognitive decline afforded to people with greater intellectual enrichment (see Stern et al., 2012). Given the same amount of brain pathology, people with a higher cognitive reserve (often measured as a great number of years of formal education) were found to be less susceptible to cognitive decline than people with a lesser reserve. Viewed from a different angle, others reported that given the same level of cognitive performance, people with higher reserves tended to have more brain pathology, indicating that their mental acuity was somehow shielded from the encroaching pathology (see Nov 2008 news).

However, some recent studies have suggested that cognitive reserves may do something even better—prevent pathology from occurring in the first place. For example, William Jagust’s group at the University of California, Berkeley, reported that AD biomarker signatures in the cerebrospinal fluid developed more slowly in people with higher cognitive reserves, and that ApoE4 carriers with higher cognitive reserves had less Aβ accumulation in their brains (see Lo et al., 2013, and Wirth et al., 2014). However, others have failed to find such a relationship (see Vemuri et al., 2012).

And this is the thought-provoking conclusion of the article:

Yaakov Stern of Columbia University in New York, one of the early proponents of the theory of cognitive reserve, said that he had originally never considered the idea that such reserves could alter brain pathology; rather, they could boost resistance to it. Now, the idea that lifestyle factors such as cognitive stimulation or even exercise could also dynamically influence brain pathology is gaining traction, he said. He added that Okonkwo’s study sample was relatively small and did not parse out the contributions of other factors associated with education. However, he said the results raise the interesting possibility that the people with higher cognitive reserves in the study may be spared not only from elevated CSF biomarkers, but also from the onslaught of dementia.

My own initial thought is that this is a fascinating area of study. If cognitive reserve can either give some protection against cognitive decline or even prevent the brain changes that are associated with dementia that might be great news for those who are fortunate enough to have some cognitive reserve but not much consolation to your average person.

The most interesting finding for me is explained in the passage in red above. Here we have people performing better than their brain pathology would suggest. Forget for the moment the uncertainty about what exactly is responsible for this positive for these people. Once again it seems clear that people with the same degree of 'brain damage' (in the simplistic jargon) perform very differently, i.e. people with the same amount of 'brain damage' can have significantly different levels of cognitive decline. It reminds me very much of the nuns study* and it's something that deserves to be much more widely investigated. 

*I've blogged about this exciting research and you can read these posts by putting 'nuns study' into the search box (top left).

For people coming across my blog for the first time, I should stress that I am certainly not a professional! When I started the blog I did not expect to be delving into such research but it's just too interesting to ignore even if I can't be sure that I've understood it!

Tuesday, 12 May 2015

Visual problems

There was an online discussion I saw where the issue of people with dementia and their problems with vision was discussed. PWD often appear to struggle to see things clearly and, for example, may come to a halt if the colour of the floor changes. Although some people PWD are registered as blind, the problem is perhaps more often to do with the link between the eye and the brain. If this is not working too well the brain cannot properly interpret what the eye is seeing. 

Particularly when they are tired or stressed, even people without dementia can temporarily misinterpret what they are seeing, though usually only for a very short period. I've noticed this effect more as I've got older. This is one more example of the many similarities between PWD and people without.

We're all just people, when you get right down to it.

Tuesday, 28 April 2015

Disempowerment again.

Empowerment-and-disempowerment is the third most read AWD post.

Here's another take on the issue, in a very different situation two and a half years on.

I still believe that it's important to preserve abilities for as long as possible even when it might be easier for us to take over. A current example for me: I've been pre-loading S's spoon and getting her to hold it and feed herself longer than I care to remember. This is incredibly time-consuming and can be very frustrating when she drops the spoon or spins it round so that food drops off. Sometimes towards the end of a meal I feed her the last few spoonfuls and that is a lot easier. But there are now so few things she can do for herself that it seems perverse to stop her doing one of them. It's so easy to disempower someone.

Interestingly, the (very experienced) carer who comes in twice a week always feeds her. As she's generally very good, I put up with this but it makes me even more determined to continue to load the spoon myself when I'm in charge.

Wednesday, 22 April 2015

Message in a Bottle Project

This looks like a useful idea for people living with dementia and their carers. In fact many people might find it interesting as, 'whilst it is focused on the more vulnerable people in our community, anyone can have an accident at home, so this scheme can benefit anyone, including you.'