A 'breakthrough' in treatment that might actually deliver worthwhile treatment

As we know, stories like this come along all the time but this does sound more promising:

https://www.newscientist.com/article/2099108-alzheimers-drug-that-failed-trial-may-still-slow-disease/

UPDATE:

Sadly this story was shot down almost immediately:

http://www.alzforum.org/news/conference-coverage/first-phase-3-trial-tau-drug-lmtm-did-not-work-period

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.

Donating your brain

Whether they believe in life after death or not, most people do not think of the body as having much use to anyone after death, which is why it is usually burnt or buried.

For many years now the principle of removing organs for donation where appropriate has been generally accepted and, in many cases, this can lead to other people's lives being saved.

You cannot, yet, donate your brain for potential transplant  -  and it is not hard to understand the problems, beyond the technical, that would be involved with that.

But you can still donate your brain, and your gift might help in the understanding of brain disease which could, eventually lead to potential treatments and cures. Neither you nor your relatives can use your brain after you and it are dead so that it could be put to use in this way is surely worth thinking about.

I hadn't thought about it at all until dementia came into my life.  I still don't think about it much but I'm starting to consider donating my own brain.  Even if it is not affected by dementia  -  and 20% of people in their late 80s will develop dementia  -  it could still be of use to researchers.

You can find out more here:

http://www.hta.gov.uk/bodyorganandtissuedonation/howtodonateyourbody/donatingyourbrain.cfm

There's even a Brains for Dementia Research Centre.

A treatable disease that can be mistaken for Alzheimer's

I came across this online.  There's a condition called  Normal Pressure Hydrocephalus (NPH) that causes, amongst other things, dementia that can be mistaken for Alzheimer's Disease:

http://www.alz.org/dementia/normal-pressure-hydrocephalus-nph.asp

In some cases the disease is treatable.  Sometimes patients can make an almost complete recovery.

Everyone interested in dementia should be aware of this disease as it is one of the few conditions involving dementia for which there is, sometimes, a 'cure'.  If someone with NPH is diagnosed as having AD, the consequence could be that they miss out on the possibility of successful treatment.

Alzheimer's 'breakthroughs'

These come along pretty regularly and are announced, and re-announced, with great fanfares.

The BBC have run with three of them, as main news headlines, in about a week. First there was the 'new' blood test (which has certainly been mentioned before). Here's an interesting take on it:

http://www.todmordennews.co.uk/news/health/blood-test-for-alzheimer-s-no-better-than-coin-toss-1-6721224 

This morning the main headline on the Breakfast Programme mentioned two tests, one which would involves cells from the eyelids and one that would test sense of smell.  There doesn't seem to be a current online link but a Google search suggests that both have been mentioned by the BBC before.

Of course, the 'small print' always tells you that the tests won't be ready for general use for years, if at all.

And it's sadly also the case that there is no cure for Alzheimer's  -  existing treatments, at best, help with some symptoms but cannot slow down the progression of the disease.  Between 2002 and 2012 99.6% of trials of drugs aimed at preventing, curing or improving the symptoms of Alzheimer's failed or were discontinued. (BBC website article)

So these really aren't breakthroughs in any meaningful sense.  Unless you regard thousands of people knowing they are destined to develop a terminal disease as a breakthrough.

A sense of achievement

Being a carer is stressful, even when the person you care for is as amenable and calm as S. When I talk to other carers it's clear to me that some of them, like me, are helped to keep going by trying to solve the problems that the condition throws up or those that arise when you try to lead as normal a life as possible.

For example, people ask me why I continue to take S away in our camper van, especially as we have gone abroad at least once each year even since she was first referred to the memory clinic and we still do this. First, of course, I have to say that I wouldn't do it if S objected. But not only does she not object, I am sure that, like me, as well as still being able to enjoy aspects of the whole experience, she feels a real sense of achievement and often smiles and gives other signs of satisfaction when I'm talking to other people about our adventures.

Another example: I never expected to be writing about bowel habits on this blog but.....move away now if you are offended. I always describe my wife as doubly incontinent as that is how she would be described medically, and the continence specialist to whom we were referred assumed that this would now be a permanent symptom of the condition. Urinary incontinence usually strikes first and those who believe in 'the stages of dementia' put it in the later stages and remark that late stage dementia often involves double incontinence.

I've always thought it odd that for S things developed the other way round.  Like so many people, S had a longstanding tendency towards constipation. So when, three years ago, she started to have soiling problems, we used any number of laxatives and other drugs which various medics swore by. They turned out to be worse than useless. They simply complicated the issue and, whatever dose of whatever drug you used, you never really knew if there was any progress. Sometimes there seemed to be, but then you were suddenly back to square one.

Fast forward three years. For weeks now, there hasn't been a problem. S has emptied her bowels around 4 times a week and is completely clean all the time, i.e. 100% goes down the pan. This hasn't been achieved suddenly of course. There have been false hopes in the past but overall things have gradually improved over time.

How has this been achieved? I expect that this is what some carers reading this will want to know. So these are my tips, mostly discovered by trial and error:

1)  Regular exercise, e.g. we aim to walk at least 5 miles a week whatever the weather and we usually exceed this target.
2)  Vegetables are very important. We tend to eat a lot (we don't eat meat). Some vegetables are extremely effective - carrots, sweet potatoes, squash, onions all work well for S so I concentrate on these every second and, if necessary, third day.
3)  Insoluble fibre, particularly wheat bran and anything that contains it, has to be treated with caution as it can have exactly the same unwanted effect as the drugs.
4)  Soluble fibre, in particular oat bran, is great and much of the improvement can be traced back to when we started to have porridge for breakfast - real porridge not instant refined muck.
5)  We discovered that immediately after the evening meal was the optimum time for a successful visit to the loo.  If there is no result at first, I have found that a fruit dessert, e.g. apple crumble, nearly always does the trick.
6)  Before every meal I give S fruit finger foods  -  mango, melon, apple, pears. I've always understood the importance of fruit but this fairly recently introduced tactic means that S eats more fruit than she did before.
7)  Obviously, it's also important to keep hydrated and this is sometimes difficult  -  S has to be watched to avoid spills and she sometimes drinks very slowly.

I'm sure none of the above is particularly novel.  And what has worked for S may not work for others but I hope that they may be of some use to someone.

Now I'm turning my attention to the urinary incontinence though I reckon this will be an even harder nut to crack, especially as S has used pads for so long

Looks like a great resource for HSV1 and Alzheimer's

I recently came across this:

http://www.alzforum.org/res/for/journal/detail.asp?liveID=188

It interests me greatly and not just because there is a lot of detail (I've barely scratched the surface) about the link between herpes simplex and Alzheimer's (a link that was first looked at in the 1970's).  I'm also intrigued that what is clearly a reputable Alzheimer's Research site is taking the growing body of research in this area seriously.

I simply cannot understand why the comparable bodies in the UK are neglecting this research.  I think it's scandalous.

Sometimes it's the little things that drive you mad

Twice today, ironically because we've had a nice weekend with one of my sons and his wife, I was quite relaxed and not quite as 'on the ball' as I usually force myself to be  So after handing S a drink I watched her start it and then carried on lighting the fire.  She then tried to put the drink down and, as so often, she managed to put it down on top of something else.  I heard it roll over and fall onto the carpet.

That meant quite a clean up, though as it had fallen onto a rather grubby bit of carpet I at least had the consolation of feeling that this was something I would probably have had to do in the near future.

But how to explain that I did a very similar thing a few hours later!  This time I left S, sitting down at the table, with a drink of fruit juice.  This is usually a bit safer, but you'd think I would have kept an eye on S until the glass was empty in view of the earlier spill.

Anyway, whilst I was happily getting on with the washing-up, S was busily walking up and down the hall carrying the half full glass of fruit juice at an angle that meant that most of it ended up on the wooden floor.  This was rather more annoying as I knew it would be much more difficult to clean up.  Though I know there's no point I did briefly remonstrate with S before remembering that there's no point.  This didn't help, though in the past I would have been much more obviously annoyed and frustrated and she would have been much more agitated.   So that's something positive I suppose.

Another herpes virus (CMV) has been found in the brains of 93% of people with Vascular Dementia

These herpes viruses cause a wide range of problems.

The article mentioned in this link dates from 2002  -  2002, for God's sake.  Any progress since?

http://www.sciencedirect.com/science/article/pii/S0969996101904656

You may wonder why this fact is not more widely known and why there has not been much research into the relationship between CMV and VD.

There is great hostility to this kind of research.  This may be because research tends to be funded by 'big pharma'.  Why would they be interested in a treatment that involved a cheap and widely available anti-viral drug?

New readers' catch-up 3

 As promised, here's a selection of more significant posts from earlier in the year:

How S has improved

Possible explanations for S's improvements

Beacons of hope

Not forgetting the first two catch-ups:

http://adventureswithdementia.blogspot.co.uk/2012/10/new-readers-start-here.html

http://adventureswithdementia.blogspot.co.uk/2012/10/new-readers-catch-up-2.html

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

Rashes and viruses

My wife's dementia was preceded by many years of ill-health involving viral infections. These often produced ME-like symptoms that were a problem for months at a time. I've discussed these before:

http://adventureswithdementia.blogspot.co.uk/search?q=viruses

It's always seemed to me possible, if not likely, that these infections have had something to do with the development of the dementia.

For as long as I've known her she has 'broken out' in rashes very frequently, usually when she is ill. They are the kind of rashes, mostly on her back or chest, that often come as quickly as they go.

I've mentioned previously that since she has had the dementia, the viral illnesses have disappeared (though until she started taking Acyclovir, an anti-viral medication, she was having regular herpes outbreaks). But the rashes I'm talking about have continued and often coincide with periods when her dementia symptoms worsen.

I'm going to try and discover whether other people with dementia have similar rashes. I'd be interested to hear whether anyone else with dementia has experienced similar rashes.

Rebooting

I think it's quite well-known that people with dementia can be quite sensitive to transitions  -  for example, a visitor arriving or leaving.  So sometimes when the person's mood suddenly changes, for better or worse, you can look for any change that has recently taken place.

I've realised that this can be used to advantage.  S was particularly restless one night and I asked her if she needed the toilet.  She is, fortunately, prepared, almost always, to see if she needs the toilet.  On this occasion, it turned out that she didn't, but once she had settled back into bed her mood had changed and I was able to fall asleep to her usual happy 'conversations'.

It's as if a change is rebooting the brain.

When she is noticeably happy, I try to avoid much change so as to prolong that state.

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.

So many things can make dementia worse

As I've read other people's experiences I have become more aware of the various things that can cause rapid deterioration in a person's dementia symptoms:

Hospitalisation, general anaesthesia, medication (side effects), medication (interaction), herpes outbreaks, constipation, urinary tract infection, undiagnosed pain and dehydration commonly cause people caring for someone with dementia to panic about the sudden decline that they witness. The good news is that in very many cases the deterioration can be arrested and often reversed.

Urinary tract infections (UTIs) are particularly nasty in their effect. Often, people are given broad-spectrum antibiotics which don't deal with the infection adequately. Proper urine testing needs to be done in order to decide which antibiotic is needed.

There are probably other things that I've overlooked. It's very important that everyone involved with dementia care knows about all this. The underlying condition is horrible enough without any further avoidable aggravation.

And of course, the way a person is treated by other people may well influence the course of the disease and the severity of the symptoms.

Unanswered questions

Browsing online forums, I've seen two interesting questions raised. Neither of them has been answered. In fact they've been more or less ignored.

The first questioner, whose parent has vascular dementia, asked about the possibility of rehabilitation. One can see where she is coming from. Vascular dementia is often described as a series of mini-strokes (though some of them are not so mini it seems). We frequently hear about stroke patients who appear to have lost many of their abilities but gradually regain them with intensive help. So why, apparently, is no attempt made to give similar help to vascular dementia patients following a mini-stroke. They are often described as typically 'plateauing' after each mini-stroke and this would seem to be the appropriate time to attempt to help them make good some of their deficits, at least partially.

If I'm right in believing that this is rarely, if ever, attempted is it because the assumption is that any ground regained will quickly be lost when the next downturn occurs? Is it down to lack of resources? It would be interesting to know.

Another person asked about the possibility of counselling to help people with dementia. To those with no experience of family members with dementia, this might seem a silly question. It's not, for at least two reasons. These days, some people are often diagnosed quite early  -  at a time when they are able to communicate pretty adequately and when they often have a fair degree of awareness of their condition. There are also people that one comes across who have the ability to communicate effectively even with people who are at an advanced stage and who could probably help them in a 'counselling' way.

Actually there do seem to be some pockets of good practice in this respect, but mention the idea to most professionals and it doesn't seem to get you anywhere.

It amazes me that, given conditions for which there is no cure, so little effort is being put into developing effective treatments, other than into drugs which help some people to some extent but also often have unpleasant side-effects.

One way in which people become institutionalised

Since we started attending events and sessions organised for people with dementia, we've got to know a fair few of the people that turn up regularly at the same places as us. One of them recently disappeared from view. It turned out that she had been living with the family of one of her children and has now, for reasons unknown, gone into a care home or possibly into sheltered accommodation.. Now this woman, and I've had the opportunity to observe her in various settings, does not come across as anything other than pretty old and a bit confused. She can hold perfectly sensible conversations and take part in all sorts of activities  -  singing, dancing, playing musical instruments, playing board games, etc.

I know there is an argument that it is best for people to move into care sooner rather than later as they are more likely to be able to adjust and be contented. But I can see no reason why it is necessary for them to immediately drop all their usual activities, and have no further contact with friends and acquaintances they may have known for years. I do know she still lives within easy reach of all the venues and I've even offered to give her a lift. But what surprises me is that the relatives don't seem to have considered what effect this sudden cessation of activities and friendships might have. We know the disease changes people, but why is it necessary to add in additional completely unnecessary changes?

Beacons of hope

There will be people who come across this blog hoping to find some answers, and maybe some hope.

As anyone who cares for someone with dementia, or who has dementia will know, answers and hope are in short supply.

However, in my search, I have found some glimmers of hope  -  if not for S, then maybe for others who are just starting out on this journey. For new or irregular readers here are links to some stories and summaries which I have found interesting and, in some cases, inspiring.

Morris Friedell

Herpes       more     the research     a possible herpes vaccine
(It's worth noting that 'the research' is the most viewed post in the whole blog.)
Steve and Mary Newport

Centenarians

The nuns' study

Belts and braces

I am interested in some of the ideas discussed by Dr Mary Newport, and  her website is worth a look for anyone interested in alleviating dementia symptoms. This link will take you to a document which itemises the improvements she has noted in her husband since she has been giving him coconut oil:
Click here to download the Word document (you'll open a box allowing you to save it wherever you want to.)
One could fairly say that Dr Newport majors in coconut oil.

The problem though is that, in addition to the coconut oil, she has been giving him any number of dietary additives/supplements as well as several conventional drugs. Among the drugs, she has been using Valaciclovir, which is a supercharged version of the anti-viral drug Aciclovir, which S has been taking during the time when she has made marked improvements. So Mary Newport also believes that the herpes virus might be a contributory factor.

With an approach that involves so many different belts and three kinds of braces it would seem quite impossible to separate out the factors(s) responsible for the improvements. One can easily understand the thinking  -  let's try anything that might help  -  but is it really necessary, or desirable to take them all at once?

Also, I can't find much about the kind of life Mary and Steve lead. This could also be relevant.

Possible explanations for S's improvement

So how were the improvements achieved?

1) I realise now that S was probably just as shocked and distressed as I was when she had the awful and sudden decline. She didn't want to be the apparently helpless person that she seemed to be, so she made, and has continued to make, real efforts to respond to my suggestions, requests, and thoughts about what might help.

2) S got her appetite back, but we don't really know why. I had a lot of help from the dietician to whom we were referred. She advised forgetting everything I'd ever learnt about a healthy, balanced diet and to give S loads of calorie rich stuff  -  cream, butter, honey etc. It was hard and I had to keep reminding myself when looking at nutrition information that I wanted the calorie count to be as high as possible. Gradually she started to eat more. Breakfast and lunch were thick sandwiches, I tried to establish a sit-up evening meal  -  with some success  -  and presented all kinds of between meals snacks. My brother and sister-in-law invited us over once a week for a proper meal and the fact that S usually ate 'properly' there, with minimal help, was greatly encouraging. Gradually things began to improve and success bred success, old habits were re-established and I was eventually able to start reducing the cream, butter and calorie-rich snacks. She has now reached what is probably her ideal weight and our diet is gradually returning to normal.

I'd actually lost quite a lot of weight with the stress of the decline. It was quite pleasant to have a period of eating whatever I liked,, when I liked. Now I've got back to where I think I should be so neither of us really needs anything other than a normal healthy diet. We are maybe a little deficient on vegetables as S, despite being a non meat-eater, is not very keen on most vegetables. But we eat a lot of fruit and S drinks apple juice almost exclusively.

3) I've mentioned the benefits of walking previously. I'm still very impressed by the ease with which S manages to walk at a reasonable pace considering how she was back in the autumn. She talks non-stop and the 'conversation' is often more agitated than when she is at home but when she gets home after a walk there is usually a lengthy period of calm.

4) We're attempting to suppress the herpes virus with aciclovir (an anti-viral medication and the only medication she has taken for several months. There are several posts on the possible link between Alzheimer's and herpes so if you haven't read them already, just put 'herpes' into the search box at the top left. I was interested to learn that the manufacturers recommend a dosage for suppression of the virus and that this can be used for months or years. I originally thought it might be difficult to get a continuous supply form the GP, but he was very helpful. I feel that S has become more aware of other people since we started this treatment but it is hard to prove.

5) We were introduced to a wonderful woman whose working life has been spent in care homes. She's now retired and hadn't worked for a few years but for whatever reason decided to work as a carer for people with dementia. We employ her for between 3 and 6 hours a week. It's very good for me, having time for myself to do things I need and/or want to do. Sometimes I stay at home and keep out of the way. I've also met friends for lunch, been for bike rides, and gone shopping in a relatively relaxed way, amongst other things. This wouldn't be nearly so easy if I didn't have someone who so clearly had an immediate rapport with S and who clearly had the skills and personality to deal with any foreseeable difficulties. From what I can see, S is very relaxed in her company and is always calm and happy when I take over again. So we are both benefiting. 

6) Finally, for now, there are the groups and activities that we now attend. The Young Onset Centre proved a real let-down but eventually the admiral nurse and the occupational therapist between them pointed us in the direction of singing, social and music therapy groups. These are all quite challenging for S -  she is usually the most challenged participant by far  -  but, because she is essentially a very sociable person, she certainly appreciates that side of the activities. And other people are generally able to see past the unusual behaviour and appreciate her real personality. She has never shown the slightest reluctance to go to these groups, despite the fact that our schedule is somewhat more hectic now. 

P.S. One of the most important factors has been the help and support of S's daughters. One of them is 3 or 4 hours away and now has two young children but she is as supportive as possible. The other one, who lives locally, sees S several times a week and has a wonderfully relaxed attitude to what must at times be quite distressing behaviour from S. It's made an enormous difference to me to have someone who now knows more about S's problems and strengths than anyone else apart from me. I don't know what I would have done if she hadn't risen to the challenge so magnificently. I can talk to her about S from our shared experience and we have learned from each other. Other family members, from both sides, have done all that they can, as have many friends.

A Herpes Vaccine may help

If, as seems at least possible, the Herpes Simplex virus is either a cause of, or a contributory factor in, the development of Alzheimer's disease in people carrying a particular gene (the research is summarised here), then the vaccine against Herpes Simplex (discussed here) offers some hope for these people.