Diagnosis again

I know I've posted about this before but I still have very mixed feelings about the importance of a quick diagnosis. Someone asked online how long a diagnosis would take.

I'm afraid it can be as long as the proverbial piece of string.

Part of the problem is that whilst memory clinics can usually decide whether someone has some sort of dementia, it can take a very long time to identify which condition a person has. Dementia can have many causes. Increasingly, as well, clinicians seem to come up with a 'mixed dementia' diagnosis as if covering their backs.

My wife was referred to a well-regarded memory clinic in 2000. She got the following diagnosis in 2011: Probable Alzheimer's disease (posterior cortical atrophy). Probable !! Since then she has had an additional diagnosis of Parkinsonism.

But during the many years of waiting we got on with life as best we could and created many happy memories. If you think a quick diagnosis will help then it might be a case of being careful what you wish for.

Now I know some people can benefit from some medications and that a diagnosis is usually required before drugs are presribed but I also know, from our experience, and from my reading that this is not always the case. S was tried on a number of  meds before she had a diganosis.

A national Dementia Atlas

Apologies if this has been posted about already but I couldn't find it if it has.

The atlas can be viewed here:

https://shapeatlas.net/dementia/#6/52.955/-2.153/l-p65


According to the Guardian, this is just the start of an exercise that should give a lot of information about how different areas perform in their approach to dementia:

https://www.theguardian.com/society/2016/aug/16/new-care-atlas-reveals-disparity-in-dementia-care-across-uk

EDIT: The previous link to the Atlas was out-of-date.

A heartwarming story

This story has, understandably, caused quite a stir. An elderly man with dementia who has been singing publicly for many years is still able to sing his songs even though his dementia often means that he is lost for words when he tries to communicate:

http://www.itv.com/news/granada/update/2016-08-05/heartwarming-video-of-dad-and-son-singing-goes-viral/

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

Fit number 6

This one happened about 5 a.m. so no chance of getting assistance unless I wanted to get the emergency services involved. I managed to stay calm enough to quickly hook Sue up to the oxygen and checked the level straight away  -  99% which was reassuring.

I used the Buccolam 'fit buster' prescribed after 5 minutes. On the previous two occasions I've used it I've waited longer but I've read that fits are more serious the longer they go on. Almost immediately there was a change in her breathing for the better and within a short while there were the usual and reassuring small movements.

She's now sleeping quite peacefully  -  the Buccolam has a sedative effect so this is quite normal. Hope to post again soon.

Genetic test could predict people at higher risk of memory problems

This recent piece of research may be of interest:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2625

Brexit Could Threaten Neurodegenerative Disease Research in Europe

The respected US-based Alzforum (Working for a cure) has some thoughts on the potential effects on research of 'Brexit' (the decision by the UK to leave the European Union):

http://www.alzforum.org/news/community-news/brexit-could-threaten-neurodegenerative-disease-research-europe

Sometimes you get nice surprises

Some months ago, I got out our Yamaha keyboard (quite a sophisticated one left here by my younger son Joe) at our care/PS's suggestion. We wanted to see if S would 'play' it. Early attempts were not promising and we didn't really persevere.

Earlier on this week I started making a list of the various ideas we have tried by way of 'activities' for S, as getting her outside is usually very stimulating for her but recent uncertain weather has made this difficult.

We decided to try the keyboard. It was amazing. She sat in front of it and played around for at least an hour and a half. We helped a bit for the first 5 minutes and then we left her to it. At first she was hitting several notes simultaneously but soon concentrated on single notes, leaving regular pauses. The effect was rather like the kind of musical sounds that might be used for a meditation tape or video. It was quite relaxing. The keyboard has many different voices and we had set one that sounded like this anyway but the pauses she left between the notes she played added to the effect. I should say that she has never learnt to play a piano or any other musical instrument.

I would never have believed that such an activity would have lasted so long. Truly a revelation and we decided to see if this can become a regular activity. She has had another session two days later. Her daughter and an old family friend were equally amazed.

It's very easy, when so many attempts to engage a person have proved fruitless, to stop trying. This is a reminder that we should never do that.

Incontinence bedpads

An earlier post (16/12/15) discusses incontinence pads and pants. But as even the best of these are by no means foolproof, many people also use washable or disposable bedpads which can go between sheets and the bed user. These are often referred to as 'Kylies' (actually a brand name). I used to use washable ones until I found disposables that do a very good job of keeping sheets dry and have 'wings' which help to keep them in place. They are Attends Cover-Dri Plus 80 x 170cm and they come in packs of 30. Prices vary so you need to shop around online. I think they are good value, bearing in mind that you will be spending money every time you wash and dry a washable Kylie. Attends and other firms make various sizes of disposable pads but these are the only ones I've found that stay in place (because of the wings).

What kind of fits?

I haven't blogged much recently. I seem to be spending more time checking up on S when I'm alone here and she is resting or sleeping. When the PAs are here, I still spend a lot of time with S.

I'm still very concerned about the 'seizures/fits', particularly their length and apparently increasing frequency. This morning I've found this very interesting website which seems to describe every known type of seizure:

http://www.epilepsy.com/learn/types-seizures

What happens to S doesn't come close to matching any of the detailed descriptions on this site. Also, I haven't searched exhaustively but all the duration times mentioned are much less than the 10-12 minutes which S's events seem to have lasted, though as the event seems to gradually morph into very deep sleep it's difficult to be sure. It's all very perplexing.

Another thing I've picked up from the site is the possibility that Omega 3/oily fish may help reduce the number and duration of seizures. This may be worth trying even bearing in mind the possibility that these are not epileptic seizures

Fit number 5

S had another fit today - the fifth, I think. This time I hadn't even got her up. I was upstairs on the exercise bike and I always have the baby monitor attached to the handlebars. I was suddenly aware that S was making the horrible gargling which I now know means 'fit'. Straight downstairs and no doubt about it. As I have her sleeping in what is just about the recovery position there wasn't much to be done. I felt a little calmer than the last time but it's always horrible being on your own. I tried a few calls to people who might have been available. The first few weren't, but eventually I had a friend, a Carer/PA who was due later and came straight round and S's daughter plus husband and kids. By the time the first of them arrived, things were definitely on the mend and S was in a deep sleep. Every so often there was a bit of drool from her mouth including a faint trace of blood which I reckon was probably because she'd bitten her tongue slightly. After about 12 minutes I gave her the Buccolam spray (prescribed sedative) but not the whole syringe full as she coughed a bit as I squirted it onto her inner cheek.

Don't know how long she slept but she had her first drink not much later than she usually has it (around 10 a.m.) followed by pretty much normal breakfast.

S's daughter and family stayed right into early p.m. and daughter has said to call her straight away if there are any further problems.

There's been some progress in dealing with the fits in a way. After each of the first two we spent most of the day at A & E and weren't much the wiser after all the testing. Following fit 3 we phoned the surgery as the GP had suggested and he came round shortly after. During fit 4 we were able to talk to him on the phone. This time we couldn't even do that because of the weekend but I'm not really worried. Hopefully, we'll have 3 or 4 months before the next one.

Anniversary of the first fit

A year ago yesterday S had her first fit. I've just looked back at what I wrote during the first few days after the fit and I sound pretty hopeful that S would walk again. Several thoughts occur to me about this now. One is that if we had not been so let down by physios she could have managed to walk again - after a fashion and never without support. But I also see now that her walking was becoming more and more erratic in the weeks leading up to the fit and it's very likely that, even without the fit, we would probably have been in a a very similar situation regarding walking as we are now. In fact, S can take a few paces with support and we get her doing this at least once a week She is always keen to do it and I'm sure it does her good in a number of ways. It also makes me think that, in the event of a fire, we could stagger to and out of the front door which is only a couple of metres from the bedroom door.

I also realise that had we not had the crisis a year ago we may have struggled on with the fairly modest level of help we had (6 hours a week) for much longer and that situation could easily have led to more potentially serious falls. It's also unlikely that we would ever have met the wonderful carer K and our other very good carer who have made such a difference to both our lives. And, of course, it's quite possible that, although we would have had to get more help eventually we would not now have nearly as much as we do.

Finally, it's important for me to keep reminding myself that S is not essentially different from how she was just before the fit a year ago and she is actually better cared for now than she was then.

The essence of the person

Some time ago now, a neighbour was asking after S and I tried to explain that, even though she can hardly speak or do much for herself she is still, demonstrably, S. The neighbour, who has had some experience of dementia said, 'The essence of S is still there!' This summed-up the situation so well that I was overcome with emotion and had to end the conversation.

I realise that we are very lucky in this respect. Some people with dementia turn into a completely different person who may be aggressive and spiteful where they were once friendly and caring, for example. Others may become such a shadow of their former selves that they are barely recognisable even to their loved ones. Some may reach a stage where they do not recognise their loved ones and may become suspicious and wonder why a stranger is in their house.

But S is still very clearly there. She still smiles a lot as she has always done (except for a brief period of about 3 or 4 months when she was tormented and paranoid). She still does her best to be helpful when she is being moved around from commode to bed to wheelchair or 'rolled' from one side to the other whilst being dressed. She still mouths the words to some of her favourites songs when we go to our weekly 'Singing for the Brain' and occasionally actually sings some words softly.

It wasn't so long ago that she clasped a carer's hand after something that had been done for her and said 'Thank you'.

She still understands a good deal of what is said to her, providing she is not too distracted by what is going on in her brain.

Most encouragingly, whenever we help her to stand and take a few paces (with a good deal of support) the determination she shows is unmistakeable.

She was always a quietly determined person  -  it's part of her essence.

The way the media portray dementia

We need a balanced view of dementia from the media. The smiley grey-haired little old lady and her smiley carer should share the billing with the tormented, paranoid, and violently aggressive person.

We need an understanding that, whilst some people suffering with dementia do die a horrible death others pass away peacefully.

We need it made clear whether they are talking about dementia (a condition which can have many causes) or Alzheimer's (which is now an umbrella term for a growing number of diseases).

In fact we need, and the media should help with this too, to put the word 'Alzheimer's' into the dustbin of history where it belongs, as an outdated description of lots of different diseases. Dr Alzheimer discovered a lot about a specific case of a disease affecting a person in middle age and I'm sure he would be amazed to learn that his name is used as to cover so many different diseases and, often, as a synonym for dementia, which is not a disease but a condition caused by many different diseases. No wonder people are confused about things when the name is used so lazily and ignorantly.

Perhaps most importantly, what cannot be overemphasised is that everyone is different and no two people with dementia have the same journey, though there will always be some similarities between them and  a lot of other people and reading about how other people and their carers are dealing with the issues as they arise can be tremendously helpful.

(We are coming to the end of Dementia Awareness Week in the UK and this post was prompted by some of the media coverage.)

NHS double standard for people with dementia in care homes

Thanks are due to the Alzheimer's Society for bringing to light what might well be described as a scandal:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2599&_ga=1.208937239.428393088.1433590610

Whether anything will change as a result of this revelation remains to be seen.

'Just in Case' medication

People with dementia, as well as many other people, are sometimes prescribed 'just in case' medication packs as they approach the end of their lives. The general idea is that appropriate medications should be available to those who are caring for the person approaching the end of their life when they are needed rather than when the surgery or pharmacy may be open.

The BMA have published a very useful paper about this:

http://www.bma.org.uk/support-at-work/gp-practices/service-provision/prescribing/focus-on-anticipatory-prescribing-for-end-of-life-care

Share the Orange

This video is self-explanatory:

Alzheimer’s Is Not Normal Aging — And We Can Cure It

I thought this was worth posting. He says some interesting things but it's a bit of an anti-climax when you realise that, as with so many new ideas that are discussed, there's still a long, long way to go. The images shown from 3.05 are very powerful:

Another fit

When I went to get S into a position so that I could give her her breakfast yesterday morning she winced and clutched the top of the arm that she had probably been sleeping on and then almost immediately went rigid. I got her into the recovery position quickly. She was breathing noisily through her nose. I tried hard to see if her tongue was obstructing her throat but her teeth were clamped tightly together. All S's fits have lasted longer than most I've read about but when it got up to 10 mins I decided it was time to try the Buccolam medication which you squirt inside the cheek. I did this at about 11 or 12 mins. It was easier to squeeze than I thought and all went in on one side with some coming out and there was some choking that quickly subsided.

What I hadn't realised was that it's a sedative - the GP told me this when I phoned after I'd given it - so it was difficult to know initially whether/when the fit had morphed into a pretty deep sleep. She eventually did sleep for a long time. I told him the GP that the oxymeter was showing fluctuations and was mostly in the low nineties which I'd read was a cause for concern but he was happy that it hadn't gone below 90. I'd managed to contact a friend of S's who lives a few streets away and who has given me her number for this purpose. She came round fairly promptly and it was a great help having her there. I phoned the GP again and was reassured that the sleeping was OK - I even got him to listen to her breathing.

Daughter and baby came later and this was also a great help. Things returned to somethings like normal. The only after-effect seemed to be extreme tiredness. She ate and drank and used the commode as normal. We also had a couple of smiles. I think she slept pretty well and had her breakfast as normal so I'm hoping we'll get her to our 'Singing for the Brain' group this afternoon.

But these things are scary when you're on your own.....

The recent drop in the number of people developing dementia

It has recently become clear that in the UK dementia has fallen by a fifth over the past 20 years. This is possibly down to lifestyle and education changes. If so this highlights the potential benefits of preventative action:

http://www.theguardian.com/society/2016/apr/19/drop-in-dementia-rates-suggests-disease-can-be-prevented-researchers-say

However a letter published in the Guardian suggests another possible reason for the reduction:

http://www.theguardian.com/society/2016/apr/21/perhaps-unleaded-petrol-heads-are-less-susceptible-to-dementia

I think most people know what a healthy lifestyle involves and it obviously makes sense to try to live healthily. However it is important to realise that there can be no guarantee that a healthy lifestyle will stop the development of dementia in an individual case. And therefore the fact that some people who live a healthy life still develop dementia should not discourage people from taking the steps that may well improve their chances of avoiding dementia.

Reasons for getting a diagnosis

I have always been somewhat somewhat sceptical about the push for more people to get an early diagnosis and I've posted about this before. It took a long time for S's diagnosis to be arrived at, more than a decade. We knew fairly early on that she probably had some form of dementia but nothing more specific.

I know some people and their carers deliberately avoid diagnosis and I can understand this.

However, there are some arguments for seeking a diagnosis:

1) There are drugs available which might help (they may not though and may have side-effects). And some forms of dementia do not really respond to any medication.

2) A diagnosis ought to give you access to a lot of valuable support. But people often report that this desirable result is not forthcoming.

3) Blood tests might show that dementia-like symptoms may be caused by a number of conditions which can often be cured or kept at bay:

http://www.helpguide.org/harvard/whats-causing-your-memory-loss.htm

Music on the Brain

I am very grateful to a member of the Alzheimer's Society's 'Talking Point' forum for posting a link to this very interesting video:

Memory retrieval, not storage, hinders mouse models of Alzheimer’s

I found this report on a research project very interesting:

http://www.alzforum.org/news/research-news/memory-retrieval-not-storage-hinders-mouse-models-alzheimers

All the usual caveats apply, of course  -  many years before this knowledge could lead to a treatment, probably doesn't apply to all dementia, etc. But I've always felt that S's most significant problem as the dementia progressed was retrieval of memories rather than storage. I felt many times that the memory was still in there somewhere and occasionally its retrieval could be 'triggered' by an event, what someone else said, a picture, music.....

Alzheimer’s disease could be caused by herpes virus, warn experts

Link to an article in the Daily Telegraph:

http://www.telegraph.co.uk/news/science/science-news/12188092/Alzheimers-disease-could-be-caused-by-herpes-virus-warn-experts.html

Regular readers of the blog will know that the herpes virus HSV-1 has been linked to Alzheimer's Disease by several research studies. There are a number of posts that discuss this. Please enter 'herpes' in the search box (top left) to find these posts.

Interestingly, google shows a link to several other major diseases such as MS and type 2 diabetes. 

End-of-life care

The British Medical Association has produced a report which addresses some important issues and prompts some questions about how people approaching the end of their lives should be treated. These issues are often of great concern to the carers of such people:

http://www.theguardian.com/society/2016/mar/14/doctors-may-treat-dying-patients-for-too-long-finds-bma-report

The loss of abilities

This post was prompted by someone mentioning online that her husband is only able to blow his nose intermittently which is, of course, very frustrating.  But it seems to me that this is the way that abilities mostly disappear - gradually. S hasn't been able to blow her nose for ages and prior to losing the ability it was very much hit or miss as it was also with, for example, spitting out teeth cleaning water or successfully negotiating stairs. I suppose at least when it starts to happen you can look at ways to compensate for the loss (if they exist!). So when the stairs are increasingly difficult it's time to look at stairlifts or moving downstairs. When an ability disappears suddenly it can be devastating. Following S's first fit she effectively lost her mobility in 48 hours and it has taken me months to accept this.

However abilities disappear, it's always a sad reminder of what else is to come. So I think it's all the more important to celebrate things that can still be done. For ten days or so, S has been more vocal than she has for many months. She's not making any sense but it's still somehow good to hear. Her first sounds this morning were "I know!" followed by made up words and unintelligible sounds. I haven't heard her say very much that makes sense apart from 'yes' 'no' or 'thank you' for a long time so it was quite a good way to start the day

A problem with research

There are daily reports of dementia-related research. A recent study, reported by Reuters Health (and others no doubt) suggests that 'repeated use of a certain class of drugs for gastric reflux or peptic ulcers was linked with a higher risk for dementia among patients in Germany'.

I'm interested in this as I've been on Lansoprazole or Prevacid (one of the drugs mentioned) for several years, though rarely on a large dose. After a period of only taking it when I really felt discomfort I recently decided to try and manage without it. Purely coincidentally I also cut right back on milk after I came across Oatly products and liked them. After a couple of months I have had very few problems with acid reflux. (I have also drunk fresh lemon juice first thing in the morning for several years and found that that helps, by the way.)

But Google reveals that lansoprazole allegedly lowers blood pressure.......and raises it! Maybe there'll be research along soon suggesting that it protects against dementia.

It seems that, as some people in the UK used to say (perhaps they still do)  'you pays your money and you takes your choice'.

The importance of diet

The more I read and about and experience the effects of various diets on people with dementia, the more it seems to me that every person with dementia (every person, come to that) really needs a diet to be arrived at, by knowledge of them and by experimentation, that meets their particular needs. Their particular dietary regime then needs to be followed consistently. In certain cases, where someone has dementia involving, for example faecal incontinence, or has an additional diagnosed disease, the consequences of not getting the right diet are potentially serious.

What are the chances of the diet being consistently observed in any Care Home or hospital?

Another reason, if you are caring for a family member, for looking after them at home for as long as you possible can.

The NHS Continuing Health Care Process

This should be helpful to anyone in the UK who is trying to obtain National Health Service Continuing Health Care Funding. The link below will take you to a booklet which includes a lot of information about the CHC Process and I think the Flow Chart at the beginning is particularly good:

https://www.england.nhs.uk/wp-content/uploads/2015/04/guide-hlth-socl-care-practnrs.pdf

Fit number 3

S had another fit today. Our carer had not been here long and was feeding S her lunch. I was in the kitchen when the carer called me to come quickly. I went straight in and it was just like the last fit. We lowered the bed and got her into the recovery position. There was a small bit of regurgitated fruit that came out and the dreadful-sounding gurgling breathing. The carer asked if we should phone for an ambulance but I reminded her that the GP said, after the last fit, that we call the surgery and he or the other partner would come as soon as they could. So rather than ringing 999 we decided to hold on. The surgery was closed for lunch so we couldn't call for 15 mins.

The fit subsided after about 8 mins though it's difficult to be exact as she was fairly passive during and after and the breathing gradually sounded a bit more normal as she seemed to drift onto quite a deep sleep. I was able to use the oxymeter and found the level was normal, at 97, even during the fit. This was a bit of a relief. Temperature was also normal.

At bang on 2 when the surgery opened, I phoned and got straight through! The receptionist talked to the GP on the phone and eventually came back with the message that he would call round in about 30 mins.

When he came S was pretty much back to normal, though tired. He did her BP and listened to her chest - no problems. We discussed whether she should be on an anticonvulsant and he thought that as all three fits had happened at similar times and she is nearly always on the hospital bed or in the wheelchair, comparatively safe, it was probably better to avoid the possibility of complications with other meds, at least for the time being. Fine by me.

So all in all, much less traumatic and tedious than the ambulance trips to A and E for the day, yet the same positive news that we would have got there. I would do the same again unless the oxygen level was a concern.

It's still very scary - particularly for the carers who hasn't seen S have a fit before - but I'm glad we held our nerve.

S soon ate the rest of her lunch quite happily and is, as far as we can see, back to normal.

No wonder people are confused

I'm sceptical about this article and not just because it's in the Daily Mail:

http://www.dailymail.co.uk/news/article-3413873/Alzheimer-s-cause-discovered-Poisonous-algae-freshwater-lakes-reservoirs-UK-fuelling-dementia-epidemic-afflicting-1m-people.html#ixzz3y9MDkzK4

I also read in latest issue of 'The Week' an article which quotes Professor John Hardy telling the Royal Society about 'drugs to halt AD within a decade'. The Week article and also contains this 'fact' (though it's not clear where it comes from):

Since 1980, there has been a 20% drop in dementia incidence (in Britain), possibly as a result of people taking actions to reduce their cholesterol levels.

I've never seen this before and most statistics suggest a growing problem. The Mail article talks of 'increasing rates of Alzheimer's'.

And even if it is true I think his possible reason is pretty implausible.

So much of the stuff you read about AD, even when you discount the massive amount of obvious twaddle, contradicts other stuff. And the media never delve into these matters in any detail at all but just wait for the next press release to come along.

Finally, so many of the articles and news items talk about dementia and Alzheimer's as if they are one condition with one cause (whatever that happens to be this week).

Pure ignorance across the board.

Early diagnosis

I have touched on this before, but I still feel strongly that the emphasis placed on early diagnosis of dementia is not necessarily helpful. I'm really talking about attempts to diagnose the exact type of dementia which is deemed necessary but is often much more problematic than people realise. I read regularly about people who have been 'diagnosed' after seemingly minimal investigation. Each time we attended the memory clinic a leading expert on dementia told us that there was a definite problem but that an exact diagnosis was not easy. Every avenue was explored until, 11 or 12 years after the initial referral, we did get a diagnosis, for what that was worth. After each appointment I spent time reminding my wife of all the positives that the expert professor had mentioned - he was a very positive guy, urging us to live as good a life as we could. We carried on doing everything we were still able to do, with increasingly frequent adaptations, finding ways to compensate somewhat for the abilities that were failing.

Do I look back at this with regret? Absolutely not! A diagnosis is just a word or two. It's not uncommon for diagnoses to be changed, sometimes more than once as the condition progresses. Drugs may work a bit for some people and help with some of the symptoms. None of them helped S and she had some unpleasant side-effects.

I would just advise other carers to concentrate on what the person they care for can still do and to find ways of compensating for the abilities that are less secure. We have had 16 years since the clinic referral and had some wonderful times. Of course, it's much more difficult now, but life goes on. I hope you will have many more years together.

An Update on S

I realise that I'm probably posting less about S these days. I've mentioned her two fits this year and given readers some idea of how the loss of mobility has changed our lives. But I feel that I have not properly recorded how NHS Continuing Healthcare Funding is helping us to get back to a way of life more like the one we had before the first fit. We are able to employ carers who not only help me carry out basic tasks like getting S safely onto the commode or into a bath but also accompany me when I take S out in the wheelchair which we do as often as we can. It's clear that she really enjoys getting out of the house after months of 'imprisonment', just like me! We have also exchanged our car for a wheelchair accessible vehicle. After a little practice we can get S and the chair up a ramp, into the car and have both the chair and S safely strapped in very quickly. We have been able to return to the weekly 'Singing for the Brain' sessions that we so enjoy. S occasionally joins in with the singing and always enjoys the social side, meeting people we have have now known for several years. But such activities are also quite tiring for her now. She often dozes, after a late breakfast, and wakes up at lunchtime but if she has had a busy day the day before she sometimes sleeps for much of the afternoon.

It helps enormously that we have one extremely positive and helpful carer who we see nearly every day and have just appointed a second carer who will clearly be very helpful as well.

Despite this I am still solely responsible for S's health and welfare for many more hours in the week than I am jointly responsible with a carer. I do feel down at times when I'm coping on my own, particularly when things are not looking good. But I always appreciate the fact that being able to look after S personally, with very helpful support, is a great privilege. I don't know how I would cope if she were being looked after elsewhere.

In the Personal Budget, there is financial provision for 'respite'. This is normally taken to mean that the person living with dementia is looked after for a short period in a care home or by home carers whilst their partner has a break from caring. I have not yet reached a point where I would feel happy doing this. I currently use the money to pay for home care one evening a week to enable me to go back to a jazz improvisation group I was attending before S lost her mobility. I do find this therapeutic.

I will try to post more regular updates on S as we are learning new things about how to cope fair regularly

Relationships in care homes

I gather that some 'care homes', believe they have a right, a duty even, to separate two residents who have developed a close relationship  -  even to the point of asking for one of them to be moved elsewhere. I'm finding it hard to believe that an organisation thinks it has the right to interfere with such a relationship simply because the two people involved are living with dementia. Of course, if there appeared to have been any evidence of coercion of one person by another there would need to be some investigation and probably action, but whether two people are just good friends  -  holding hands say  -  or decide to take things further, they have, prima facie, the same rights as any other people. This is, after all the twenty-first century.

A useful way of looking at the whole issue, and it can be applied to many other areas, is whether the fact that the two people involved are living with dementia inevitably means that there are different rules that should be applied to them by people who aren't living with dementia and therefore know 'better'. Many people not living with dementia get themselves into relationships which their 'loved ones' and others deem ill-advised. People without dementia may misunderstand what the other person in a relationship really wants, may abuse the other person mentally and physically, sometimes to the point of murder, and generally make their close relatives very unhappy.

Such a relationship may upset other people, become embarrassing to other people, make life complicated - all things that can happen when any relationship between any two human beings develops.

Take a situation where two people in a care home living with dementia and having no living family develop a relationship which becomes physical. Is that 'acceptable'?

If someone is unequivocally incapable of making a decision as to whether they want a relationship, physical or otherwise, then clearly action is required. But just to mention 'capacity' is not a good enough reason to act. People can easily disagree about it and it is a slippery concept at the best of times.

I hope and suspect that most care homes would recognise the subtleties involved and not have a blanket ban on relationships between residents.

Horses for courses

Those looking after a person living with dementia often discuss the best way of dealing with the situation where the person you are caring for believes something that is not true  -  believing that their partner is their parent, for example. 

I think that you have to play it by ear depending on your own circumstances. You will find some people for whom honesty will always be the best policy and others who will always go along with what the person they care for says, even adding details they have invented themselves to the person's 'story' . I tend to try not to go down the path of invention which, it seems, can easily get out of hand and even catch you out. Often a bit of distraction works and you don't even need to start spinning an appropriate story. But the ultimate test is what is most likely to make the person feel happy or, at least, untroubled.