Possibly the most exciting research into dementia so far

It's not new. I've posted previously about the nuns' study:
http://adventureswithdementia.blogspot.co.uk/2012/05/nuns-study.html

I have found an article that explains, more clearly than ever, why this research should receive so much more attention:

Perhaps the single most important conclusion from the study is that Alzheimer disease is not straight forward. In several cases, pathology studies of brain tissue from the deceased nuns did not correlate with their performance on cognitive function tests. Sometimes the pathologist would score a brain as having signs of extremely advanced AD, only to learn later that the nun herself scored extremely well on all cognitive tests. Other times a brain would show only slight damage associated with AD, and the nun was characterized as exhibiting the signs of advanced cognitive decline and dementia.

I often wonder whether there is anything new from this study. Apparently the original researcher has retired but the University of Minnesota is hoping to continue the work:

Additionally, the University of Minnesota has announced that it will begin a second study, with a new group of volunteer nuns, to delve further into the mysteries of Alzheimer disease: Why do some people develop symptoms and not others? Why do some people with advanced brain damage: plaques, tangles and tissue loss, not show any symptoms, while others with minimal brain damage show symptoms of advanced AD?

How odd that these questions are so rarely referred to in discussions of the disease!

Here's a link to the article:
http://promega.wordpress.com/2009/05/04/alzheimer-disease-and-the-nun-study/

Sweet Tooth

I was telling a professional, when my wife was not eating much, that she tended to prefer sweet things. 'Ah yes, they develop a sweet tooth'. Me: 'No. She's always had a sweet tooth'. 'Ah yes, it's very common. They develop a sweet tooth.'!!!!! 

However, some people with dementia do seem to develop a sweet tooth. But I have recently learnt that, as people get older, the taste buds begin to disappear (along with many other things!) and, with far fewer taste buds, people tend to favour foods that make the strongest impact, e.g. sweet things. People with dementia are predominantly elderly.......

So mostly it's not to do with having dementia, it's to do with ageing. I definitely know that my sense of taste has deteriorated, and I probably like sweet things more. I am quite old but I don't have dementia.

Another example. Plates of a certain colour are allegedly easier for people with dementia to see the food on. But, guess what? There's no agreement about which is the best colour  -  yellow, blue, red  -  because everybody's different. And the issue could be to do with deterioration in the eyesight (i.e. the actual eyes becoming less efficient) or with problems relating to the link between the eyes and the brain (which are a feature of some types of dementia). So when someone says 'Yellow plates are best for them', they might be right about some of them but, even for those some, the problem could be to do with ageing rather than with the dementia.

There are so many examples of this attempt to portray 'people with dementia' as almost a different species. They are, of course, just people.....who happen to have dementia.

An interesting phenomenon

We take note of all the details of a disease and yet make no account of the marvels of health.
MARIA MONTESSORI

This is quoted in Zeigel's book 'I'm Still Here'. It came to mind when I was taking part in a discussion on an online forum about a common phenomenon (we know it's common as many carers have reported it) which occurs when a person with dementia is confronted with a professional or, less commonly, with someone they don't know, and puts on a 'public face' presenting themselves, quite convincingly. as 'fine', as a person who has no particular problems.

This is understandably frustrating to carers, particularly those who know that when they are alone again with the person they care for, they will have to endure aggression and, sometimes, physical violence. It's also frustrating if they have anticipated that when the professional sees the real problems, useful support will be forthcoming (of course, a positive outcome is by no means guaranteed even if the real problems are observed!).

I was interested in the fact that these brain-damaged people, whose behaviour is normally reckoned to be entirely beyond their control, are apparently capable of deciding on some level to be on their best behaviour, sometimes throughout a lengthy conversation. (It's very common for people, with and without dementia, to answer that they're fine when asked how they are, but we're talking about something much more elaborate).

Whilst recognising the frustration, I was surprised that people didn't seem to realise how remarkable this was. If a person can have this control in some situations, why not in others? Could we, perhaps, persuade them to behave differently in other situations?

Anyway, I was reminded very strongly of the Montessori quote when I read some of the discussion. 

Who am I caring for?

Am I caring for a dementia sufferer?

Or am I caring for a woman who has:
daughters (and sons-in-law),
grandchildren,
a husband,
a father who's still alive,
a brother and sister-in-law,
stepsons (and step daughters-in-law),
many friends,
an interesting and varied career to look back on,
a deep love of music,
many wonderful, and some very sad, memories,
etc, etc, etc,
and who now has dementia?

There is a difference.

New readers catch-up 2: Causes/contributory factors

In my effort to try and understand the disease, I've looked so far at three possible causes/contributory factors. Unlike some of the stuff that you can find online, these have all been discussed and researched by perfectly reputable scientists, and at least two of the three were taken seriously by the memory clinic and its very highly respected head.

Just click on the links which take you to various posts on this blog:

1) Lyme disease

2) Tamoxifen  and here  mice experiments

3) Herpes and here

(There's more on Herpes and the best way to find it all is to put the word into the search box (top left) and click 'enter')

Empowerment - and disempowerment

One of the most frustrating things for someone with dementia must be the sense of losing control, of being unable to do things for yourself, of having to rely on other people for help with the most personal of tasks. Just the thought of being in this situation is pretty scary for most people who aren't in this situation.

Even if we weren't able to work this out for ourselves, people with dementia who are still able to do so tell us that this is the case. Much of the agitation and aggression commonly demonstrated by people with dementia who no longer have the language skills to explain their feelings probably arises from this frustration.

It might therefore appear strange that one common method of communicating with and dealing with people with dementia stresses the idea that they can feel secure in the knowledge that all their needs will be taken care of, that they no longer need to worry about doing anything for themselves. Is this what you wold want to hear in that situation?

To me, the approach appears deeply flawed. You're telling people who feel totally disempowered that they ought to enjoy that feeling. How frustrating is that!

More importantly, the best way of losing a skill is to stop trying to use it. If everything is going to be done for you, the few things that you can do for yourself will soon fall away. And your carers will have no idea of what you might be able to do with a little help and encouragement.

It's very easy for a carer to fall into this trap even if they don't accept the ideology. In many ways, life appears to go more smoothly if you do everything for the person with dementia because you can do almost anything more quickly and more efficiently.

But then you'll wake up one morning and realise that there's nothing they can do for themselves.

New readers start here

As the blog is nearly one year old, it occurs to me that as new readers come along, it could be helpful to point them towards some significant posts that chart the perhaps unusual developments in my wife's condition.

This is one of the earliest posts:

http://adventureswithdementia.blogspot.co.uk/2011/10/slipping-away-from-me.html

This was one of the lowest points, though looking back, my anger probably helped me through this period:

http://adventureswithdementia.blogspot.co.uk/2011/11/dreadful-negative-experience.html

This was another awful time:

http://adventureswithdementia.blogspot.co.uk/2011/12/today-is-special-day.html

In the New Year, things started to improve:

http://adventureswithdementia.blogspot.co.uk/2012/01/bit-calmer-some-things-happening-lot-of.html

This was an interim 'progress report':

http://adventureswithdementia.blogspot.co.uk/2012/02/progress-report.html

I'll leave it at that for now, but post further selections on the near future.

It is of course possible to read any or all past posts by clinking the links at the bottom and right of the page. 

What are, and what aren't, symptoms of dementia?

This is the title of a section of John Zeisel's 'I'm still here'. It's all very obvious once you've read it, but it's really helpful to have all this set out so clearly.

Zeisel differentiates between the primary symptoms of Alzheimer's disease, the secondary symptoms and the tertiary symptoms (which may not be symptoms at all, but rather natural reactions to social and physical environments).

The primary symptoms are directly attributable to either cognitive or functional impairments. Memory difficulties are the most obvious example of cognitive impairment but executive function (referring to our ability to organise the complex sequences of activities involved in, for example, using tools and even in the activities of daily life, such as dressing) is also very significant as are speech deficits.

Secondary behaviours would not occur if it were not for the primary symptoms but are not immediate reactions to them. So a primary symptom might be difficulty in controlling ones impulses but if this leads to aggression, as it can do, it isn't the case that aggression is a primary symptom, rather it is a reaction to not being able to handle what is happening to the person. It's important to distinguish between those secondary behaviours which are disturbing to others and those which aren't. There's a tendency to just accept the latter  but it might be quite possible to help a person who is apathetic and listless by involving them in meaningful activities, for example.

Tertiary symptoms are behaviours that may not be symptoms at all. Two examples Zeisel gives are things such as withdrawing from participating in meaningful activities and uninvoked aggression.

Then he discusses the nonsymptoms which he classifies as caregiving nonsymptoms, social environment nonsymptoms, medical treatment nonsymptoms and physical environment nonsymptoms. I'll return to these in a future post.

The reason why this kind of analysis is important is that once you accept the approach it is clear that at least some of the secondary and tertiary symptoms might be susceptible to treatment. And Zeisel points out the difference between cure and treatment: As yet, there is no cure for dementia, but a lot of the symptoms and nonsymptoms are susceptible to treatment.

People with dementia have a lot in common with people who don't

This may sound obvious, but it's interesting to realise that many of the things that people with dementia do, and which sometimes attract comment, are things that people who don't have dementia also do.

Two recent examples that I've come across online:

Someone noted that their husband cried when moved by music. This is very common. In fact, I would think that most people at one time or another have experienced this themselves. In the case of a person with dementia it could be considered something worthy of celebration that this happens, as people with dementia can become apathetic and fail to respond to most external stimuli.

It's well known that many people with dementia talk to themselves and/or make noises when, for example, they are trying to concentrate on something. So do many, if not most, other people. Admittedly, people without dementia often talk to themselves silently but it's not uncommon for them to do this aloud.