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. 

The myth of intelligence

It may not be immediately be obvious how this post is relevant to dementia, but bear with me.

I have always thought that our society is mistaken in being so in awe of 'intelligence'. This view has been strengthened by the current controversy over the GCSE 'moving the goalposts' fiasco. Regardless of the rights and wrongs of that issue, much of the discussion has accepted the need to have an exam at 16 which will sort sheep from goats and correctly identify the most 'intelligent' who will become the movers and shakers of our society. We're constantly told that universities and employers are interested in the 'best' (by which is meant 'most intelligent') students.

In fact the exams as currently formulated are largely memory tests, i.e. slightly more sophisticated than the memory tests given to people who might have Alzheimer's or some other kind of dementia. 'Who is the prime minister?' is a common question that's asked of 'dementia suspects'. I'm indebted to someone posting on an online forum for passing on novelist Iris Murdoch's answer (she had Alzheimer's): 'I don't know, but does it matter?'

The answers to so many exam questions are taken to be indicative of 'intelligence' in the same way that knowing who the prime minister is a potential 'get out of jail' card for the dementia suspect. This is, if I may say so, a bit mad. What does the ability to answer this kind of closed question really tell us about the person, other that that in these cases they remember or they forget? 'Does it matter?' is an appropriate response in all cases.

Not surprisingly, in the public consciousness intelligence and the memorising of facts are seen as synonmous. Thus contestants on 'Who wants to be a millionaire?' routinely describe the people they've chosen as friends in 'phone a friend' as 'very intelligent'. Now that almost every fact that you might wish to know is a few keyboard taps away, this confusion might eventually fall away. Then people can start finding out about, for instance, Gardner's 'multiple intelligences'. But I digress.

I think that one of the reasons why people with memory disorders/dementia are treated (and I realise that word has more than one meaning) so badly is that 'intelligence' is prized so very highly  -  this is the other side of the coin. No memory? So no intelligence, no brain, no humanity.

We come back again to personhood. And there is a link also to education and preparation for life. If I'm right, and there are things that are more important than 'intelligence'  -  the ability to consider the needs and views of others, the ability to form relationships, the ability to cope with disappointment and tragedy, the ability to understand other people, the ability to 'read' situations from non-verbal clues and many more  -  then these things should have at least as much of a look-in, as far as education is concerned, as 'intelligence'. Very difficult to include in league tables but in reality vital abilities for many employees.

It is so much easier to relate to people with dementia, to appreciate their personhood, if you can escape the myth of 'intelligence'.

Personhood

I've mentioned personhood previously, and this is one of the posts that I'd urge everyone to read:

http://adventureswithdementia.blogspot.co.uk/2012/04/person-is-more-than-their-cognitive.html

In 'I'm Still Here', (see previous post), John Zeisel poses a question that should really stop us in our tracks: 'Does a person have to speak intelligibly, to remember the names of recent prime ministers, or to be independent in caring for him or herself in order to be a person?'

There's only one answer to that.

But accepting the answer intellectually, as most people who aren't neurologists would, doesn't necessarily make it certain that you will always remember the answer and act accordingly. As I've indicated at various points in the blog, I read what some experts say about people with dementia and wonder if they spend much time reflecting on the nature of 'personhood'.

This may be the book I've been looking for

My son mentioned that this book  -  'I'm Still Here' by John Zeisel  -   had been recommended as an inspiring read at a course he attended  -  not a course about Alzheimer's. I read the reviews on Amazon and decided to buy it there and then. I've only read the first chapter so far but the whole book is about a very positive, person-centred approach to the business of caring for people with dementia. I'll try to reserve judgement until I've read the whole book, but so far I'm very impressed. It looks like the book that everyone should read.

Anyone with a Kindle can try a free sample (which will probably be the first chapter that I've read).

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?

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.

A person is more than their cognitive ability

It's obvious really, but this extract from a Gransnet Q & A with Professor Alistair Burns, the government's 'dementia tsar', explains with great force and clarity why a person-centred approach is vital when dealing with dementia  (and the same could probably be said of all mental health conditions).

A criticism of the focus on dementia is that it puts too much emphasis on what is lost (memory) and not enough on what endures.

This plays into ageism by creating the idea that life is a process of inevitable decline.

The obsession with cognitive ability - which is actually prevalent throughout life, from the classroom onwards - leads us to a very narrow view of human nature and how to age well.

Do you agree that stereotypes of dementia are creating the idea that cognitive ability inevitably falls away in middle age? And that this obsession makes it very difficult to respect the selfhood of older people?

How do we treat the disease while avoiding this negativity?

Dear bridgeofsighs,

You raise a very important point in terms of re-ordering the way in which we regard and treat people with dementia. While we do know that cognitive ability (predominantly memory) does decline with age, there is the assumption, which as you say is completely false, that dementia is part of normal ageing. This brings up the profound therapeutic nihilism to which you are referring and, as you say, can lead to a narrow view of human nature.

You raise the key point of selfhood of older people. In dementia we call that personhood and the preservation of personhood enshrined in person-centred care is a key aspect of improving the treatment of people with dementia.

In terms of your last question, about treating the disease while avoiding this negative view, our awareness campaigns - while directed at alerting people to the early signs and symptoms of dementia - will help in this regard. The honesty and openness of people like Sir Terry Pratchett in declaring his Alzheimer’s and how he is living well with dementia is also an important part of rebuffing this negativity.

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.

The fatalism of the experts

There is no such thing as remission in Alzheimer's, or so we are told. I saw a web Q & A with David Shenk, author of 'The Forgetting', a fascinating 'history' of the disease, and he said this in so many words. And you can find several other eminent professionals on the web saying the same thing.

Yet reading Shenk's own book I came across Morris Friedell. Shenk was obviously impressed with his abilities, in 1999, and it appears from his web presence that he is still going strong  -  and is in touch with other people who also seem to be holding the disease at bay. This is inspiring.

What increasingly depresses me about the experts (and actually Shenk is essentially a journalist so may have some excuse) is their fatalism about the disease. I think it must arise from the fact that this is so predominantly a disease of old age. Maybe there's an unspoken assumption that as they're soon going to die anyway, it doesn't really make a lot of difference that there's no remission, no cure  -  and precious little effective treatment. Whatever the reason, it would be good to see more attention paid to people like Friedell and what the experts who haven't experienced the disease themselves might learn from some brave spirits who have. We rightly admire and laud people who 'struggle' with terminal cancer, but people with dementia are seldom if ever talked about in the same way, even though many of them may really be doing themselves a great deal of good by refusing to accept that their fate is sealed.

Progress report

There's no doubt that, over the last few weeks, things have improved significantly for us. As I've noted before, we have started getting out for walks again, though the weather is sometimes a deterrent. Even though S talks non-stop all the while we are walking and is often quite agitated this seems to 'get it out of her system' and she will sit quietly for a long time when we get home. It's also encouraging that her walking is as good as it's been for years. We've also been supermarket shopping together and had lunch in the cafe without any problem. On another occasion, we stopped off for a pub lunch whilst out walking. These are simple things but, when life was at its worst I didn't really expect to be able to do them again. You may be wondering how this has happened. The support we've had from family, friends and 'online friends' have certainly been invaluable. I know from reading online forums how many dementia sufferers, particularly the elderly, have to spend so much time 'home alone' and how many carers seem to have little in the way of support and my heart goes out to them. I think also that we've got more used to our situation - the sudden decline last autumn really hit me like a brick so that even though I'd always known that things would get worse I'd never expected it to happen so dramatically and then for a while things just seemed to carry on getting worse. I realise now that S was probably just as shocked and distressed as I was and that she didn't want to be the apparently helpless person that she seemed to be so has been making real efforts to respond to my suggestions, requests, and thoughts about what might help. Over time too her 'conversations' have become generally quieter and are not quite as negative as they were - more happy talk - though she still gets agitated and aggressive in brief bursts. Getting her to bed has become so much simpler than it was at one time as we have established a routine and she rarely protests when I or her daughter (who is still round at bedtime a couple of times a week) suggest going up to get ready for bed. Plus we've got better continence aids at night from the clinic so this cuts down the washing and means we both get a better night's sleep as S does not wake up too early. There has also been some improvement in terms of the incontinence.And there's good news on the food and drink front. Sheer persistence and lots of tips from different people, including the community dietician, have worked. I just have to accept that she is keener to talk than to eat and that meals take a long time. I tend to do a lot of calorie rich sandwiches but some kind of evening meal with dessert for which we sit up at the table. This week we've started sitting up at the table for breakfast too. S is only drinking apple juice at the moment but drinks a lot. Now she is over 8 stone and gaining weight all the time. People keep telling her she looks better. She does, and I keep reminding her that this is because she is eating and drinking properly. Support from professionals is still very patchy but I was put in touch with carer with long experience of working in dementia homes and I pay for a few hours from her each week. She gets on well with S, who really likes her and the carer is able to do more for her and with her as she gains her confidence. So I'm able to do a little more of the things I need to do and even some of the things I want to do! I think both of us are benefiting from this arrangement. In the last few week both my stepdaughter and I have noticed that S is more aware of us, asking how we are and responding more often to attempts to talk to her. She's also taking the initiative more with the cats which I'm very glad about as we got them for her but initially she barely seemed to notice them despite being a lifelong cat lover. There could be all sorts of reasons for this but I'm pretty much convinced that the fact that I've carried on giving her small daily doses of Aciclovir - the anti-viral drug prescribed for her herpes outbreak is a factor in the general improvement. 
(New readers see this: http://adventureswithdementia.blogspot.com/2012/01/more-about-possible-relationship.html)


So all in all, there's a lot to be grateful for but I keep reminding myself not to expect too much.

Entering S's universe or trying to drag her back into ours?

This must be a bit of a dilemma for anyone trying to care for someone who has auditory hallucinations and is almost constantly engaged in conversations with figments of her imagination. For instance, very often and almost always when I'm trying to get S to do something she will suddenly announce,, 'She's gone!' and sometimes get very distressed.  I can either ignore this or try to reassure her.  But I can only reassure her by to an extent playing by her rules and at least briefly accepting the reality of her universe.  My rational self tells me that there is something wrong with this.  But sometimes I cannot stand listening to her distress.  I'll ask her, 'Who's gone?' and she'll reply, 'Micia' (the name of one of her 'friends'  -  named for a cat that we used to look after).  I'll say, 'Don't worry, she always comes back.' because she always does.  I don't know if this really helps S but sometimes it seems to and my concession to her distorted brain is a small price to pay.

There is something called validation therapy which, as I understand it, involves entering into a person's imagined universe in a big way and 'validating' their experience and perception.  I'd be very unhappy with that  -  and I'm sure I'm not alone  -  as I instinctively feel that it would be better if S spent less time in her universe and more time in the 'real' one.  And of course there's an approach that tries, probably with people at an earlier stage of the condition, to reorientate people to reality by, for example, putting great emphasis on the date, day of the week, time etc. This is called, unsurprisingly, reality orientation.

As usual, it seems to be a question of balance and going with your gut feeling.  So I am getting used to sometimes entering S's universe, usually to reassure her, and sometimes trying to get her to understand the real world again, usually when I need her to do something, or when I need to do something for her that requires her co-operation.  Once again, I count myself lucky that I can usually get her to 'snap out' of her imagined universe long enough to get things done, though often, as with eating, there's an almost farcical stop/start sequence involved.

How can S still be helpful?

S's sense of herself - she still has one - includes, very firmly, a belief that she should be and is helpful to others. This is absolutely correct, she was a single mother from the time her kids were very young and a teacher whose roles were often specifically and always predominantly to do with caring for and helping those in difficulty of one sort or another. I believe she would like to still be doing this sort of thing and is frustrated that this is just one of the things that she can no longer do - or as she sees it - is not allowed to do. I have realised this from listening to numerous versions of a conversation where she is trying to sort out girls' problems (she finished her career, premturely, in a girls' school).

Her daughter and I have found that a sure way to get her co-operation, even when she's angry, is to ask her to help us.

I would love to find some other way(s) that she can be truly helpful and that we can keep praising her for. The cats we have acquired are one possibility. I agreed to the pressure from her daughters as I believe they could help to occupy and calm her but my line will be that by paying attention to them and stroking them she will be helping them - that will be her vital contribution to their care whilst I'll do the easy things like feeding them (though, of course I'll stroke them a bit too!).

If anyone else has any ideas - it's very hard - please let me know by commenting.

Direct questions

One oft-repeated piece of advice about interacting with dementia patients is to avoid direct questions - easier said than done, I admit. But what do the professionals do when 'assessing' a person with dementia? Yep......question after question.

Sometimes helping is not helpful

One of the things I've learnt, and I wish I'd understood it sooner, is that helping S when she is having difficulty with some task is not necessarily a good thing.

Typically, something will become harder for her, let's say some aspect of getting dressed. If you follow your natural inclination and help her, she will let you. I won't say that she's happy to let you because, initially, she still feels that she should be able to do it herself. But as time passes, you do it more and more and she does it less and less though still, on occasions, will be able to do it without help. Over time though, what started as hard becomes very difficult and then impossible. One more skill is lost.

Now, I try much harder to resist the temptation to help when I think that she might just be able to do it herself. But still I often intervene as she is finding it so frustrating.

There's no point in dwelling on these things - you can only do what you can do - but if I was starting again I would try much harder to preserve her independence at all cost.