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.
Friday, 29 May 2015
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?
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.
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!
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).
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.
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