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
Monday, 7 December 2015
Sunday, 6 December 2015
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
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
Sunday, 29 November 2015
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 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.
Friday, 20 November 2015
S has had another fit
Fortunately it's clear that it wasn't as bad as the last time. Although it was horrible to witness and hear (she was breathing in a strange gurgly way for 7 or 8 mins) she recovered quickly in terms of vital signs. The first responder got here before the fit was even properly over and her oxygen level was normal (it helped that as she was in the hospital bed I was able to get her into the recovery position very quickly, unlike last time when she was in a very awkward crumpled position and it was deemed potentially dangerous to move her).
I've looked at the NHS Choices page on seizures (fits):
It was scary - you know anything can happen but it's still a shock when it does - but I found I was able to cope. I was very reluctant to go to A & E after our last experience and I phoned our GP before I agreed and he said to go, if only for the bloods. Our carer came straight to the hospital, as did S's daughter who brought her very recently-born baby with her. So the waiting was actually quite bearable.
All the tests were fine, including a chest x-ray (as the thing started when she was drinking and coughed so there was a risk of aspiration pneumonia developing) ECG and various blood tests. Her chest sounded fine as well.
Rather than wait 3 hours for an ambulance home, S's daughter drove me to collect the wheelchair and vehicle. I then drove back and our carer helped me lift S into the chair and we came home in tandem. We then got her back on the bed and settled ready for an evening snack. She had eaten most of a sandwich at the hospital so no problems with her appetite. Two days later everything suggest that she is pretty much back to where she was so just a 'normal' fit, if there is such a thing, but we shall see.
http://www.nhs.uk/Conditions/Epilepsy/Pages/Symptoms.aspx
It confirms that there is an enormous range of symptoms that can constitute a seizure, e.g. S regularly has what could well be Myoclonic seizures, particularly at breakfast time and these can occur in conjunction with other types of seizure.
Also, it confirms that not all seizures are due to epilepsy.
It looks as though this is yet another area that I need to get clued-up about.
It confirms that there is an enormous range of symptoms that can constitute a seizure, e.g. S regularly has what could well be Myoclonic seizures, particularly at breakfast time and these can occur in conjunction with other types of seizure.
Also, it confirms that not all seizures are due to epilepsy.
It looks as though this is yet another area that I need to get clued-up about.
Tuesday, 3 November 2015
A very powerful cry from the heart
She's FINE - so we the authorities don't need to do anything but YOU should...
Take the morning/day off to get her to all her medical appointments because otherwise she won't go. Ring them and apologise for her non-attendance and rearrange another appointment, booking yet another day off when she says she doesn't feel like it today.
BUT SHE'S FINE.
Attend said medical appointments and sit slightly behind her in order to nod or shake your head to indicate whether what she's saying has some basis in reality or is a complete and utter nonsense.
BECAUSE THAT'S COMPLETELY NORMAL AND ROUTINE THING TO DO FOR PEOPLE WHO ARE "FINE".
In fact, go everywhere with her now because she's visibly vulnerable when she's out, and a target for the unscrupulous. She's also not really safe on her own out and about any more due to all the falls and her inability to access public transport or cross roads by herself any more.
COS THAT'S NORMAL FOR PEOPLE WHO ARE "FINE".
Nearly get hit by a car yourself when she runs out into the road like a naughty toddler, but unlike a toddler you can't put her on reins.
BUT SHE'S FINE. (YOU"RE A NERVOUS WRECK BUT WHATEVER.)
Do all her shopping because the only thing she can cope with buying anymore is bread and biscuits. Which is lucky because that's pretty much all she eats.
BUT SHE'S FINE.
Supervise her 24/7 because she wanders and has a tendency to turn up places in distress, very frightened and confused.
BUT SHE'S FINE.
Supervise what she's wearing because she tends to wear exactly the same clothes whether it's a heatwave or a snowstorm.
BUT SHE'S FINE.
Remind her to bathe and wash her hair because she doesn't know what day it is, so she doesn't know it's bath day or hairwash day.
BUT SHE'S FINE.
Remind her to use the loo and get out of her chair now and then because otherwise she can sit there in front of the tv for hours and hours and hours and then have an accident.
BUT SHE'S FINE.
Clean up the mess when she has an accident because she "couldn't be bothered to do that now/didn't feel like it/ didn't have time."
BECAUSE THAT"S STANDARD BEHAVIOUR FOR SOMEBODY WHO IS "FINE".
Turn her heating off when it's 26 degrees outside and she's whacked it all the way round to the max "because it didn't come on".
BUT SHE'S FINE.
Go down there to turn her heating on when you ring her to remind her to eat or take her pills and you can hear her shivering.
Also make her put the cardigan on that's sat over the arm of the chair next to her, and press "ON" on the electric fake gas fire that you had fitted because you hoped it would stop her fiddling with the central heating.
SHE'S FINE THOUGH.
Ring her and remind her to eat and take her pills a few times every day.
YOU KNOW, BECAUSE SHE'S FINE.
Go down there immediately every time "the tv won't work" because she can't work the tv all the time and she can't follow instructions over the phone, but it's Ok because it's a two mile walk and the exercise is good for me.
SHE'S PERFECTLY FINE THOUGH.
Realise that you've just got used to most of the downstairs curtains being closed all day every day "because people are looking at her".
SHE'S FINE THOUGH.
Get a Power of Attorney then register it with the bank so that you can pay all her bills for her because otherwise she wouldn't, and everything would get cut off.
BUT SHE'S FINE.
Remove all banking paperwork and her bank card from her home and give her pocket money - because she's been stuffing charity envelopes with hundreds of pounds every month and giving her bank details to people on the phone and strangers on the doorstep.
BUT SHE'S FINE. AND DEFINITELY NOT BEING FINANCIALLY ABUSED BY THESE CHARITIES, CHUGGING COMPANIES AND INTERNET SUPPLIERS/INTERNET SECURITY SALESMAN ETC BECAUSE THEN WE'D HAVE TO DO SOMETHING.
NO. NOT EVEN THE ONE WHO MORTALLY OFFENDED HER BY TELLING HER TO GET HER CARERS TO BUY HER A MAGNIFYING GLASS SO THAT SHE WOULD BE ABLE TO READ OUT HER CARD DETAILS OVER THE PHONE. (CARERS?! HOW VERY DARE YOU! SHE'S FINE.)
Redirect her post to your house so that she no longer receives the charity begging envelopes full of raffle tickets etc because she treats the "suggested donation" part as a bill she has to pay. If it says "Suggested Donation £30" then that's what she sends them.
Except that she doesn't really know which note is which any more so she puts three notes in, but not being sure which ones they are she puts another few in to be on the safe side. And in this way she could draw out £150 from the bank on Monday morning and have none of it left on Wednesday afternoon despite not having left the house except to post a couple of letters.
SHE'S FINE THOUGH. THIS IS JUST SOMETHING YOU HAVE TO DO FOR PEOPLE WHO ARE FINE.
Register the Power of Attorney with the phone company so that you can a) pay the bill and b) so that you can buy her a phone and stop her renting one from the phone company, because she could have bought many many many phones for the amount of money she's paid to rent the same one since 1985, and c) so that they will talk to you because you need to get Caller ID on the line so that you can buy a TruCall machine which will screen her calls - both to protect her from salesman/criminals and because she says "debt collectors" are ringing her to ask questions about her neighbours and she's giving them chapter and verse about who's got a new car, and who stays where overnight, and who she thinks isn't really disabled. You don't know if this is true or not, but you can forsee lots of trouble with the neighbours if she should mention it to them.
SHE'S FINE THOUGH.
Buy a TruCall box and set it up so that only friends and family can ring her.
BECAUSE SHE'S FINE.
Buy her a Buddi telecare system which she refuses to wear, even though she's had several falls. Because she's not going to fall again you see.
SHE'S FINE THOUGH YEAH? TOTALLY.
Be at her house when she gets up in the morning. (Anywhere between 5 am and 9 am.) And again when she decides to go to sleep. (Piece of string) And also if she gets up in the night. Because she can no longer manage cleaning her contact lens regularly and keeps injuring her eye by not putting the neutralising tablet in, taking the contact lens out out too soon, confusing saline solution with cleaning solution or by not cleaning it at all and putting a cracked dirty contact lens into her eye.
OR
Replace her £120 contact lens about every three to four weeks before it cracks, and take her to A&E regularly when she forgets to put the neutralising tablet in or takes the lens out too soon before it has worked.
SHE'S FINE THOUGH. SHE'S NOT ENDANGERING HERSELF AT ALL. NOTHING FOR THE AUTHORITIES TO HELP WITH HERE.
Fill in all forms and do all life admin - because she can't.
SHE'S FINE THOUGH. THIS IS ABSOLUTELY NOT A SIGN THAT SHE NEEDS ANY HELP FROM THE AUTHORITIES.
Guide her step by step through how to sign her name when she needs to - because she can't really write any more, and can't remember what to write either.
SHE'S FINE THOUGH.
Turn down invitations to people's weddings because you can't leave her unattended, don't have a holiday for the last six years or the next 15, realise that the idea of having a social life or even a gym membership is ridiculous and give up your whole life to supervising her.
BECAUSE SHE'S FINE.
Take whatever abuse she wants to throw at you very day cheerfully and compassionately, always validating her reality and negating your own.
YOU NEED TO DO THIS BECAUSE SHE"S FINE.
Fight back tears when an entire bus queue gives you sympathetic looks and pats your hand or shoulder as they get on because of the evil things she's been saying to you at the top of her voice for the last eight minutes while they all queued for the bus.
BECAUSE THAT'S FINE.
Buy her a cup of tea in town and then get back on the bus with her after she refuses to do the shoe shopping you came into town to do because you've upset her by not having the energy to cry and she likes it when she's able to make you cry.
STANDARD. NORMAL. "FINE".
Take anti depressants and sleeping pills just so that you can cope with the stress of dealing with her because her behaviour is so "challenging".
WE WOULDN'T NORMALLY INSIST THAT YOU STAY IN AN ABUSIVE RELATIONSHIP AND DRUG YOURSELF SO THAT YOU CAN COPE, BUT WE WILL ABSOLUTELY EMOTIONALLY BLACKMAIL YOU IF YOU SEEM TO BE SUGGESTING THAT YOUR MENTAL HEALTH MATTERS TOO.
BECAUSE SHE'S FINE.
Take the morning/day off to get her to all her medical appointments because otherwise she won't go. Ring them and apologise for her non-attendance and rearrange another appointment, booking yet another day off when she says she doesn't feel like it today.
BUT SHE'S FINE.
Attend said medical appointments and sit slightly behind her in order to nod or shake your head to indicate whether what she's saying has some basis in reality or is a complete and utter nonsense.
BECAUSE THAT'S COMPLETELY NORMAL AND ROUTINE THING TO DO FOR PEOPLE WHO ARE "FINE".
In fact, go everywhere with her now because she's visibly vulnerable when she's out, and a target for the unscrupulous. She's also not really safe on her own out and about any more due to all the falls and her inability to access public transport or cross roads by herself any more.
COS THAT'S NORMAL FOR PEOPLE WHO ARE "FINE".
Nearly get hit by a car yourself when she runs out into the road like a naughty toddler, but unlike a toddler you can't put her on reins.
BUT SHE'S FINE. (YOU"RE A NERVOUS WRECK BUT WHATEVER.)
Do all her shopping because the only thing she can cope with buying anymore is bread and biscuits. Which is lucky because that's pretty much all she eats.
BUT SHE'S FINE.
Supervise her 24/7 because she wanders and has a tendency to turn up places in distress, very frightened and confused.
BUT SHE'S FINE.
Supervise what she's wearing because she tends to wear exactly the same clothes whether it's a heatwave or a snowstorm.
BUT SHE'S FINE.
Remind her to bathe and wash her hair because she doesn't know what day it is, so she doesn't know it's bath day or hairwash day.
BUT SHE'S FINE.
Remind her to use the loo and get out of her chair now and then because otherwise she can sit there in front of the tv for hours and hours and hours and then have an accident.
BUT SHE'S FINE.
Clean up the mess when she has an accident because she "couldn't be bothered to do that now/didn't feel like it/ didn't have time."
BECAUSE THAT"S STANDARD BEHAVIOUR FOR SOMEBODY WHO IS "FINE".
Turn her heating off when it's 26 degrees outside and she's whacked it all the way round to the max "because it didn't come on".
BUT SHE'S FINE.
Go down there to turn her heating on when you ring her to remind her to eat or take her pills and you can hear her shivering.
Also make her put the cardigan on that's sat over the arm of the chair next to her, and press "ON" on the electric fake gas fire that you had fitted because you hoped it would stop her fiddling with the central heating.
SHE'S FINE THOUGH.
Ring her and remind her to eat and take her pills a few times every day.
YOU KNOW, BECAUSE SHE'S FINE.
Go down there immediately every time "the tv won't work" because she can't work the tv all the time and she can't follow instructions over the phone, but it's Ok because it's a two mile walk and the exercise is good for me.
SHE'S PERFECTLY FINE THOUGH.
Realise that you've just got used to most of the downstairs curtains being closed all day every day "because people are looking at her".
SHE'S FINE THOUGH.
Get a Power of Attorney then register it with the bank so that you can pay all her bills for her because otherwise she wouldn't, and everything would get cut off.
BUT SHE'S FINE.
Remove all banking paperwork and her bank card from her home and give her pocket money - because she's been stuffing charity envelopes with hundreds of pounds every month and giving her bank details to people on the phone and strangers on the doorstep.
BUT SHE'S FINE. AND DEFINITELY NOT BEING FINANCIALLY ABUSED BY THESE CHARITIES, CHUGGING COMPANIES AND INTERNET SUPPLIERS/INTERNET SECURITY SALESMAN ETC BECAUSE THEN WE'D HAVE TO DO SOMETHING.
NO. NOT EVEN THE ONE WHO MORTALLY OFFENDED HER BY TELLING HER TO GET HER CARERS TO BUY HER A MAGNIFYING GLASS SO THAT SHE WOULD BE ABLE TO READ OUT HER CARD DETAILS OVER THE PHONE. (CARERS?! HOW VERY DARE YOU! SHE'S FINE.)
Redirect her post to your house so that she no longer receives the charity begging envelopes full of raffle tickets etc because she treats the "suggested donation" part as a bill she has to pay. If it says "Suggested Donation £30" then that's what she sends them.
Except that she doesn't really know which note is which any more so she puts three notes in, but not being sure which ones they are she puts another few in to be on the safe side. And in this way she could draw out £150 from the bank on Monday morning and have none of it left on Wednesday afternoon despite not having left the house except to post a couple of letters.
SHE'S FINE THOUGH. THIS IS JUST SOMETHING YOU HAVE TO DO FOR PEOPLE WHO ARE FINE.
Register the Power of Attorney with the phone company so that you can a) pay the bill and b) so that you can buy her a phone and stop her renting one from the phone company, because she could have bought many many many phones for the amount of money she's paid to rent the same one since 1985, and c) so that they will talk to you because you need to get Caller ID on the line so that you can buy a TruCall machine which will screen her calls - both to protect her from salesman/criminals and because she says "debt collectors" are ringing her to ask questions about her neighbours and she's giving them chapter and verse about who's got a new car, and who stays where overnight, and who she thinks isn't really disabled. You don't know if this is true or not, but you can forsee lots of trouble with the neighbours if she should mention it to them.
SHE'S FINE THOUGH.
Buy a TruCall box and set it up so that only friends and family can ring her.
BECAUSE SHE'S FINE.
Buy her a Buddi telecare system which she refuses to wear, even though she's had several falls. Because she's not going to fall again you see.
SHE'S FINE THOUGH YEAH? TOTALLY.
Be at her house when she gets up in the morning. (Anywhere between 5 am and 9 am.) And again when she decides to go to sleep. (Piece of string) And also if she gets up in the night. Because she can no longer manage cleaning her contact lens regularly and keeps injuring her eye by not putting the neutralising tablet in, taking the contact lens out out too soon, confusing saline solution with cleaning solution or by not cleaning it at all and putting a cracked dirty contact lens into her eye.
OR
Replace her £120 contact lens about every three to four weeks before it cracks, and take her to A&E regularly when she forgets to put the neutralising tablet in or takes the lens out too soon before it has worked.
SHE'S FINE THOUGH. SHE'S NOT ENDANGERING HERSELF AT ALL. NOTHING FOR THE AUTHORITIES TO HELP WITH HERE.
Fill in all forms and do all life admin - because she can't.
SHE'S FINE THOUGH. THIS IS ABSOLUTELY NOT A SIGN THAT SHE NEEDS ANY HELP FROM THE AUTHORITIES.
Guide her step by step through how to sign her name when she needs to - because she can't really write any more, and can't remember what to write either.
SHE'S FINE THOUGH.
Turn down invitations to people's weddings because you can't leave her unattended, don't have a holiday for the last six years or the next 15, realise that the idea of having a social life or even a gym membership is ridiculous and give up your whole life to supervising her.
BECAUSE SHE'S FINE.
Take whatever abuse she wants to throw at you very day cheerfully and compassionately, always validating her reality and negating your own.
YOU NEED TO DO THIS BECAUSE SHE"S FINE.
Fight back tears when an entire bus queue gives you sympathetic looks and pats your hand or shoulder as they get on because of the evil things she's been saying to you at the top of her voice for the last eight minutes while they all queued for the bus.
BECAUSE THAT'S FINE.
Buy her a cup of tea in town and then get back on the bus with her after she refuses to do the shoe shopping you came into town to do because you've upset her by not having the energy to cry and she likes it when she's able to make you cry.
STANDARD. NORMAL. "FINE".
Take anti depressants and sleeping pills just so that you can cope with the stress of dealing with her because her behaviour is so "challenging".
WE WOULDN'T NORMALLY INSIST THAT YOU STAY IN AN ABUSIVE RELATIONSHIP AND DRUG YOURSELF SO THAT YOU CAN COPE, BUT WE WILL ABSOLUTELY EMOTIONALLY BLACKMAIL YOU IF YOU SEEM TO BE SUGGESTING THAT YOUR MENTAL HEALTH MATTERS TOO.
BECAUSE SHE'S FINE.
I came across this online. The person who wrote it has given me permission to post it. They said they are going to edit parts of it as they did it at 5 a.m. and 'it is not very well written'. I beg to differ.
Wednesday, 28 October 2015
A sad and shocking story
http://www.theguardian.com/uk-news/2015/oct/27/man-84-awaiting-deportation-died-in-handcuffs-home-office-inquest
We hear a lot about dementia awareness in the UK. It seems there's still some way to go.
We hear a lot about dementia awareness in the UK. It seems there's still some way to go.
Sunday, 25 October 2015
Diagnosis again
Even now, 15 years after S's referral to the memory clinic. I have learnt something new about her diagnosis, a diagnosis that was only made in 2011. The doctor who finally did the home visit following my pestering after she was 'discharged' from the Movement Disorder Clinic (because a Movement Disorder - inability to walk - meant she couldn't attend the Clinic!) has written to the GP and helpfully copied to the letter to us.
Under 'Diagnosis', I read 'Probable AD (posterior cortical atrophy)'.
This is something of a surprise since this has never been mentioned by any of the medics who have dealt with her previously, which include a leading expert on dementia who saw her regularly between 2000 and 2011 when she was finally diagnosed, by a neurologist, as having AD.
Having had a quick look at PCA online, this doesn't seem any more appropriate than any of the other diagnoses that have been 'tried on for size' during the 15 years.
Just as well, as no-one suggests that it makes a scrap of difference to how S is treated or, rather, not treated.
The only suggestion he makes, apart from a tweak in the Sinemet (Parkinson's Disease) medication, is a 75mg aspirin daily dose due to his 'suspicion of cerebrovascular disease'. This suspicion has been entertained and rejected before. S seems to have none of the risk factors for cerebrovascular disease.
So we're none the wiser really.
Under 'Diagnosis', I read 'Probable AD (posterior cortical atrophy)'.
This is something of a surprise since this has never been mentioned by any of the medics who have dealt with her previously, which include a leading expert on dementia who saw her regularly between 2000 and 2011 when she was finally diagnosed, by a neurologist, as having AD.
Having had a quick look at PCA online, this doesn't seem any more appropriate than any of the other diagnoses that have been 'tried on for size' during the 15 years.
Just as well, as no-one suggests that it makes a scrap of difference to how S is treated or, rather, not treated.
The only suggestion he makes, apart from a tweak in the Sinemet (Parkinson's Disease) medication, is a 75mg aspirin daily dose due to his 'suspicion of cerebrovascular disease'. This suspicion has been entertained and rejected before. S seems to have none of the risk factors for cerebrovascular disease.
So we're none the wiser really.
Thursday, 1 October 2015
Interesting research and a silly generalisation
http://www.expressandstar.com/news/uk-news/2015/09/30/brain-implant-aims-to-reverse-alzheimers-memory-loss/
This is a fascinating idea even if its transalation into something usable is probably decades away.
I spluttered, as I always do with such statements, at this:
That is why someone with Alzheimer's disease can recall events from long ago - before the disease took hold - but have difficulty forming new long-term memories.
I know someone with AD who finds it as difficult to recall any event from long ago as she does to form new long-term memories. I'm sure she's not the only one.
This is a fascinating idea even if its transalation into something usable is probably decades away.
I spluttered, as I always do with such statements, at this:
That is why someone with Alzheimer's disease can recall events from long ago - before the disease took hold - but have difficulty forming new long-term memories.
I know someone with AD who finds it as difficult to recall any event from long ago as she does to form new long-term memories. I'm sure she's not the only one.
The same old tendency to generalise that we've noted before.
Saturday, 26 September 2015
Dementia death
A couple of times I've come across statements online to the effect that deaths from dementia are uniquely horrible. I know some people with dementia do, sadly, die in pain and torment. But many do not. I've written here about my mum's 'dementia death'. I have also read many accounts of the dying moments of people with dementia and some of them clearly just faded away. Indeed, some of them die in their sleep just as some people without dementia do,
People have also stated that what makes the death of a person who has dementia uniquely awful is the way in which loved ones lose the person 'bit by bit'. Of course, this is true in one sense but it's also true that some families find that they can still find and communicate with 'the essence of the person' right up until their death,
It is also true that there are many other truly horrible ways to die. I do not need to spell them out here.
So whilst I understand that the last days or hours of a loved one dying from dementia can sometimes be truly dreadful, I don't see that there is anything to be gained from expecting it to be or claiming that it always is.
People have also stated that what makes the death of a person who has dementia uniquely awful is the way in which loved ones lose the person 'bit by bit'. Of course, this is true in one sense but it's also true that some families find that they can still find and communicate with 'the essence of the person' right up until their death,
It is also true that there are many other truly horrible ways to die. I do not need to spell them out here.
So whilst I understand that the last days or hours of a loved one dying from dementia can sometimes be truly dreadful, I don't see that there is anything to be gained from expecting it to be or claiming that it always is.
Monday, 14 September 2015
When There's No Amyloid, It’s Not Alzheimer’s
This is the heading to a fascinating article in the latest Alzforum weekly newsletter. Here's a link to the article:
http://www.alzforum.org/news/research-news/when-theres-no-amyloid-its-not-alzheimers?utm_source=Alzforum+Weekly+Newsletter&utm_campaign=0372e368ea-September_14_2015_Newsletter&utm_medium=email&utm_term=0_944a562dd7-0372e368ea-91738709
And the first paragraph gives you the gist:
Reporting in the August 24 JAMA Neurology online, researchers led by Eric Reiman at Banner Health in Phoenix, confirm what others have suspected from PET imaging, namely, that as many as one-third of the people clinically diagnosed with mild to moderate Alzheimer's disease do not meet criteria for significant amyloid accumulation in the cerebral cortex. Reiman and colleagues came to this conclusion after examining brain tissue postmortem—the gold standard for assessing amyloid burden. The finding puts the kibosh on the idea that some PET scans are negative because amyloid ligands bind poorly to particular forms of amyloid in some AD patients. It also reinforces questions about the accuracy of clinical diagnoses of AD and leaves the field struggling to explain what causes dementia in these amyloid-negative individuals. This promises to be an intense area of investigation, said Reiman.
Articles like these are often difficult for a lay person to understand. But from what I can understand and already know I would say the title is begging the question a tad. It should be no surprise that many people diagnosed with AD are found post mortem not to have amyloid accumulation in their brains. But surely this could be because either, as the title says, people without the amyloid must have a different disease or different diseases OR because, as other research suggests, amyloid accumulation is not as significant in AD as is so often claimed.
http://www.alzforum.org/news/research-news/when-theres-no-amyloid-its-not-alzheimers?utm_source=Alzforum+Weekly+Newsletter&utm_campaign=0372e368ea-September_14_2015_Newsletter&utm_medium=email&utm_term=0_944a562dd7-0372e368ea-91738709
And the first paragraph gives you the gist:
Reporting in the August 24 JAMA Neurology online, researchers led by Eric Reiman at Banner Health in Phoenix, confirm what others have suspected from PET imaging, namely, that as many as one-third of the people clinically diagnosed with mild to moderate Alzheimer's disease do not meet criteria for significant amyloid accumulation in the cerebral cortex. Reiman and colleagues came to this conclusion after examining brain tissue postmortem—the gold standard for assessing amyloid burden. The finding puts the kibosh on the idea that some PET scans are negative because amyloid ligands bind poorly to particular forms of amyloid in some AD patients. It also reinforces questions about the accuracy of clinical diagnoses of AD and leaves the field struggling to explain what causes dementia in these amyloid-negative individuals. This promises to be an intense area of investigation, said Reiman.
Articles like these are often difficult for a lay person to understand. But from what I can understand and already know I would say the title is begging the question a tad. It should be no surprise that many people diagnosed with AD are found post mortem not to have amyloid accumulation in their brains. But surely this could be because either, as the title says, people without the amyloid must have a different disease or different diseases OR because, as other research suggests, amyloid accumulation is not as significant in AD as is so often claimed.
Sunday, 13 September 2015
Still trying to get S walking
We have had a second visit from the private neuro physio. She noticed some improvements in S's movement and balance. The main problem is still that the bent knees aspect of the 'Parkinson's gait' stops S from standing up properly and this is not helped by her understandable lack of confidence after so long off her feet. This is something that might be helped by increasing the dosage of the Sinemet (Parkinson's med), When S first took it about a year ago, the improvement in the gait was noticeable. I have spent a lot of time chasing the Parkinson's clinic for a home visit to assess and prescribe. They do do home visits, it turns out, but it might be a long wait.
In the meantime, the physio was all in favour of us getting S out and about once we are downstairs and have a wheelchair, and she is confident that S has the strength to allow her to be moved from the wheelchair to a car seat. She mentioned a transfer board. If this proves possible it will open up new horizons for us even without S being able to walk. She had some helpful suggestions about ways to make transfers more efficient and safer. When she had gone, K and I transferred S from chair to bed using the suggested technique and S actually took a couple of steps during the process. She was fully supported by us but still this is more than we've seen for quite a while.
We've agreed that she won't come again at least until we have the wheelchair, in 3-4 weeks. I do feel that she is reluctant to try too much for fear of injuring S and is also very reluctant to do things that cause S to be agitated. But the agitation she is seeing is very minor from our perspective. She repeated something that she has said before which is that we may find that with increasingly regular activity S may just start to to walk. I'm sceptical as S was needing a lot of support to get started even before the 'event'. But I do feel that if we are a little more active in supporting her she may eventually overcome her fear of being on her feet, which is currently a major factor.
So there is still some hope.
In the meantime, the physio was all in favour of us getting S out and about once we are downstairs and have a wheelchair, and she is confident that S has the strength to allow her to be moved from the wheelchair to a car seat. She mentioned a transfer board. If this proves possible it will open up new horizons for us even without S being able to walk. She had some helpful suggestions about ways to make transfers more efficient and safer. When she had gone, K and I transferred S from chair to bed using the suggested technique and S actually took a couple of steps during the process. She was fully supported by us but still this is more than we've seen for quite a while.
We've agreed that she won't come again at least until we have the wheelchair, in 3-4 weeks. I do feel that she is reluctant to try too much for fear of injuring S and is also very reluctant to do things that cause S to be agitated. But the agitation she is seeing is very minor from our perspective. She repeated something that she has said before which is that we may find that with increasingly regular activity S may just start to to walk. I'm sceptical as S was needing a lot of support to get started even before the 'event'. But I do feel that if we are a little more active in supporting her she may eventually overcome her fear of being on her feet, which is currently a major factor.
So there is still some hope.
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