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.'

Thursday, 16 April 2015

New Hope for Alzheimer's Research?

'Between 2002 and 2012, 99.6% of drug studies aimed at preventing, curing or improving Alzheimer's symptoms were either halted or discontinued.'

A staggering quote from this Guardian article:


The author explains how researchers are finally realising that they have made an appalling mistake in concentrating, to the exclusion of almost everything else, on trying to find drugs that would remove beta-amyloid plaques from the brains of people with the disease. This turns out to have been possibly the biggest, most expensive and most pointless wild goose-chase in the history of medical research.

There is also summarises the recently-reported research which suggests a different approach to treatment or cure which looks promising and even opens up the possibility that lost memories may one day be regained.

A breath of fresh air!

Saturday, 4 April 2015

A very sad lament from a carer

This is the text of a letter that appeared in the Guardian:

Is it true that if re-elected the Tories are considering cuts for carers? I ruined my physical and mental health by being a carer for elderly/infirm parents who were not coping in their council flat and dreaded the thought of a nursing home. I also ruined my financial health. They came to live in my terraced home. I was already a carer for my disabled son, so that made three. Eventually I had to give up my job and career because caring became a 24/7 job. They were with me for 17 years until their death in their 90s but I was never eligible for carer’s allowance. What a mug! Years ago when I was working I heard a businessman saying that he could not accept his elderly mum into his home as “my son, Nigel, needs the 2 spare rooms for his studies”. At the time I thought “how selfish” but years later I was not so sure.If carers get cuts in allowances, do not be a mug like me. Refuse to be a carer. You are important too, so don’t lose your identity. What am I saying? At the age of 88 (89 if I live until November) I’m still the sole carer for my son and, of course, will carry on as long as I can.
Barbara MacArthur

Saturday, 28 March 2015

Carer's Allowance under threat

In the UK, where we still have a vestigial welfare state, there is a paltry means-tested Carer's Allowance.

Now it is under threat.  But it has been shown that the contribution of all the carers saves the country a staggering £119bn.

There's a comment on this from the excellent charity Carers UK here.

Sunday, 8 March 2015

Parkinson's Update

I've posted previously about my wife's Parkinson's symptoms.  You can find these posts by putting 'Parkinson's' into the search box (top left).

We last saw the Parkinson's doctor when my wife was up to three-quarters of a normal daily dose of Sinemet (Co-caroldopa).  We had tried going a bit further but upping the first dose of the day caused horrible vomiting. He said it probably was the Sinemet and that anti-emetics might help. I explained that because of S's past history, I was a bit wary about this and he was quite happy for me to continue with three-quarters for a while though he said that, in time, the dose would have to be raised to get some benefit and we might need the anti-emetic then,

He also told us he was retiring and wouldn't be seeing us again. I was disappointed about this - he's good. He said he would refer us to the local 'Day Hospital' where a multi-disciplinary team assesses and assists people with PD/Parkinsonism.

We got an appointment there quite promptly.  There was a fairly thorough assessment, though some repetition, and we had a conversation with the doctor who suggested that another way to deal with the drug side-effect problem was to keep to the same individual dose but take it 4 times a day instead of 3, thereby avoiding larger individual doses. We have gradually raised the dose, without any ill-effects and some improvement in flexibility and alertness.

I was a bit disappointed by the physio aspect. They gave us a handout which has some useful-looking ideas but most of which would probably be beyond someone with dementia. I looked online for exercises and this looks good, though again some things would not be possible.

I'm still searching for appropriate exercises that can be done for/with someone.

Wednesday, 4 March 2015

What does it feel like to die?

Living in the dementia world you cannot escape thinking about death. Regularly, you read online about the end if life experience of people with dementia and their carers.  Similarly, people you meet at the various activities you attend disappear from time to time and months or sometimes weeks later we hear of their passing.

And everyone who cares for a person with dementia knows that they are likely to have to face the death of the person they are keeping alive, unless their own death comes first.

I came across this interesting article which seems to offer some comfort for those who believe in life after death but also to those who would find the inevitability of their own death easier to accept if there was a fair chance that it could be painless, peaceful and, even, uplifting.

Sunday, 22 February 2015

'I hate Alzheimer's...'


(The person who posted this powerful and moving statement online is happy for it to be copied.)

I hate Alzheimer's because, many years ago, it barged its way into my dear wife's life and began the ruthless, agonisingly slow process of squeezing the life force out of her.

I hate Alzheimer's because, not only did it take away the pen with which she could write new memories but, with cold-blooded efficiency, it also began the process of erasing the memories she had already written.

I hate Alzheimer's because, even as our two sons and I hugged each other, sobbing at Brenda's bedside after she had passed away, it brazenly stood there, hands held aloft saying "Don't blame me! It wasn't me that killed her - it was the pneumonia or heart problems or loss of swallow-reflex" and yet it was the Alzheimer's as surely as any drug-pusher or illegal gun-supplier is responsible. It may not have pulled the trigger but it certainly provided the weapon.

I hate Alzheimer's because, if I had bought a punchbag on which to take out my frustration over the many years of Brenda's decline and even if I had knocked seven bells out of it at regular intervals and even if I had kicked and clawed and battered it again and again and again, today it would still look as unscathed and unbothered as the day I bought it. Alzheimer's would have simply shrugged it off with a cocky "Is that all you've got?"

But, you know, Alzheimer's, we are going to get you. Every penny we raise, every test we do, every trial we endure, every hopeful lead we see falter and fail takes us one day nearer to making you a hideous nightmare of the past and you will no longer cast that awful shadow over mankind. I truly believe that with all my heart and we will get you.

I promise.