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.

Would you please consider signing these petitions?

Here are two petitions that readers in the UK might wish to sign. They both deal with the thorny issue of Continuing Healthcare funding (CHC). CHC can be granted to people who have serious, complex health problems and it means that the National Health Service (NHS) pays for their care.

The decision in each individual case is taken locally and it is clear that a 'postcode lottery' exists. People in some areas are much more likely to be funded in this way than people in other areas.

These petitions address this issue:

https://you.38degrees.org.uk/petitions/investigation-into-the-malpractices-of-nhs-continuing-care

https://petition.parliament.uk/petitions/114241

A beginner's guide to incontinence pad and pants

People with dementia eventually become incontinent. Many people who look after them may have had no previous experience of dealing with this issue. It took me a long time to get my head round all the differing products. I'm hoping this round-up may be of help to others.

There are many brands out there, some of them household names and some of them relatively obscure. Just because you know the brand name it doesn't necessarily follow that a particular type of product is going to be ideal for the person you are looking after. There's a certain amount of research and trial and error necessary and, over time, needs will change.

There are 4 main types of pants or pant/pad combinations.

1) There are washable pants with separate disposable pads.

2) There are washable pants with built-in washable pads. These are intended for less severe incontinence.

3) There are 'nappy-type' disposable pads which are adult versions of what most people use for babies these days.

4) There are disposable 'pull-ups' with a built in pad.

Whichever type you go for it's a good idea to look at the absorbency which the manufacturers claim for the product. Obviously in normal use you can't be sure that you'll get the capacity that the manufacturers may claim. All sorts of things like whether the person with the incontinence moves about a lot or how well the product has been fitted will have an effect here. My general rule would be that if you keep getting wet or soiled clothes or bedding it's time to see if you can find something that works better for you.

Of course the best products are not cheap. In the UK many Local Authorities have a continence service which may provide free pads/pants but, sadly, it's often the case that the meagre number of pads per 24 hours provided is not enough and the pads themselves are pretty useless if you are dealing with moderate to severe incontinence. You should remember also that the costs of washing those products that can be washed may be considerable over time.

When S first used these products we settled for the separate pads and pants provided by the continence service and these were OK until the incontinence became severe when we had to look for more absorbent pads. The loss of mobility also made things more difficult and we finally found that the only things that worked pretty well for most of the time were pull-ups with the maximum claimed absorbency but even these cannot be expected to last all night.

I haven't attempted to cover faecal incontinence but small amounts will usually be contained by many of the product discussed above. The best way to deal with faecal incontinence, by the way, may not be with medication which is often prescribed. I have blogged in more detail here:

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

Respite

It's very common for carers to be offered 'respite'. Typically, the person they care for will spend a night, or some night(s), in a care home so that the carer can have a day or few days respite from the demands of caring.

I haven't done this yet but since S has been given Continuing Healthcare funding I could easily do it in the future. There's a specific budget available. But, and this is something that you have perhaps to experience to appreciate fully, even now I find that my efforts to do more, get out and see friends etc are limited by my need to know that S is OK - even though I know that she is being well looked-after. There's almost a time-limit sometimes - I feel the pull and have to come home. Even though I talk about longer respite - even a single overnight away e.g. - I currently find it hard to imagine myself doing that. She still depends on me - I've kept her going. And as a result, I'm somehow dependent on her.

I think I might well eventually come to accept that extended respite, i.e. beyond a weekly 'evening off', will be necessary but I also feel that the difficulty that many carers have in accepting this is underestimated.