It's the 'medication'

[Ed1964]

In short: Mum had minor depression following an operation. Was prescribed diaz. Became lethargic and clumsy....was prescribed something else. Then something else, then something else. I am absolutley certain that it was the multiplication of medication that caused mum's symptoms. After several years, I have finally found a consultant that agrees with me. We are trying to wean mum off the stuff. Medication made mum incontinent. Drugs made her illiterate and inumerate. They undoubtedly caused more problems than they solved. Repetitive behaviour - drugs again. If you love someone who is exhibiting 'signs', please do anything before you allow a cocktail of poisons to be prescribed. There are investigations into SSSRi's for instance, which suggest that these drugs cause dementia. You want to keep that person for longer? Keep them off the dope - that's all it is, dope. Read the side effects - for all of it. If you are somehwre down the road think - when did the behaviours start? was it before he/she started taking that stuff?
Doctors are not Gods shock! A GP sees hundreds of people a week. They do, unfortunately, end up dishing out the same old stuff for everyone exhibiting 'this' or 'that'. Like it or not, it's a production line. Has anyone actually been made any 'better' by drug treatments for dementia? Doesn't look like it. Prescription just precipitates changes - none positive. Use some common sense. Be gentle, help where you can, do the activity things. In what way do mind altering substances help people who are becoming confused?

 

[Grannie G]

Hello Ed

I`m sorry your mother has had such a bad experience from medication but I`m asking you to accept this as your experience and does not qualify you to advise others.

Your question

Has anyone actually been made any 'better' by drug treatments for dementia?

We all know there is no cure for dementia but if you read posts on this forum you will find testimony from many, in praise of an improved quality of life through medication for dementia.

It is dangerous to make global statements in this manner. Your experience is all you have the right to refer to. My husband had a bad experience of dementia medication too but it hasn`t stopped me appreciating how many people have benefitted from it.

 

[marionq]

Wise words Granny G. Without the medication my husband takes he would not sleep at night and would still be wandering and getting picked up by me, strangers, the police or lying under a bus. Trackers and mobile phones were not enough.

Alzheimers drugs do not suit him because of his slow pulse but the other medications mean he is at home with me and not in a care home. It took months of effort from our CPN and consultant and us to find the right level. So far it works.

 

[Witzend]

I'm sure that may well be true in some cases, but it certainly wasn't with my mother. She wasn't on any medication when symptoms of dementia first appeared, and was hardly ever on any during the many years she had advancing dementia, which eventually became very severe.
She was on Aricept for a short while in the early years but since it didn't apparently help, it was stopped.

 

[The Chewtor]

We, as sufferers, are all individuals on very different journeys where only the destination is common. There are no one size fits all symptoms, nor drugs, nor types of care, nor types of support groups. nor quality of professionals etc. Any one drug can have a number of differing levels and for some help, for some do nothing, for some other be detrimental. Some Gp's are great, some not, some highly experienced, some not but if anyone is not happy with how 1 GP deals with a situation, go elsewhere or ask to see a consultant/specialist.
It will never end but it can be better so push the GP's to learn more. The government wants them to put dementia higher on their priority lists so force the issue, push for more and better every time you visit.

Wayne

 

[Dothedealnow]

The meds that my mother is on is slowing down the rapid progression of her dementia, is allowing her to be cared for thus minimizing the chance of further UTIs. As mentioned above, every journey is different and therefore so are the meds.

 

[Pinkys]

ed1964.

I was similarly concerned about my MiL's cocktail of drugs, until I realised she was actually just stockpiling them in a cupboard! There was only one occasion where she was prescribed something which she actually took, far too often, and became utterly confused, kept falling over etc. Took about a week to get out of her system.

So it's horse for courses. Some people definitely react badly to some drugs and then another is prescribed etc. However, it was only the drugs that kept my mother in any sort of tolerable emotional state for the last few months of her life.

 

[Aisling]

In short: Mum had minor depression following an operation. Was prescribed diaz. Became lethargic and clumsy....was prescribed something else. Then something else, then something else. I am absolutley certain that it was the multiplication of medication that caused mum's symptoms. After several years, I have finally found a consultant that agrees with me. We are trying to wean mum off the stuff. Medication made mum incontinent. Drugs made her illiterate and inumerate. They undoubtedly caused more problems than they solved. Repetitive behaviour - drugs again. If you love someone who is exhibiting 'signs', please do anything before you allow a cocktail of poisons to be prescribed. There are investigations into SSSRi's for instance, which suggest that these drugs cause dementia. You want to keep that person for longer? Keep them off the dope - that's all it is, dope. Read the side effects - for all of it. If you are somehwre down the road think - when did the behaviours start? was it before he/she started taking that stuff?
Doctors are not Gods shock! A GP sees hundreds of people a week. They do, unfortunately, end up dishing out the same old stuff for everyone exhibiting 'this' or 'that'. Like it or not, it's a production line. Has anyone actually been made any 'better' by drug treatments for dementia? Doesn't look like it. Prescription just precipitates changes - none positive. Use some common sense. Be gentle, help where you can, do the activity things. In what way do mind altering substances help people who are becoming confused?

Am sorry you had bad experiences but must disagree with your general conclusion regarding meds.

Meds have helped my OH. Doctor carefully monitors him.

In my opinion activities may not be the answer for everyone.

Aisling

 

[Ed1964]

....continued

I should add that these are not only my observations but are shared by a lot of people that I've spoken to at the CH where my mum ended up when Soc Services got bored with her, and at the day care centre, as well as in converstaion with mum's consultant. I have no doubt that some medication serves to dull some behaviours or mask some symptoms, but there are doubts about effectiveness.
In the same way that 'old fashioned' anti-depressants are now known to be linked with the onset of dementias, there are doubts about the benefits and side effects of current treatments. Also about a link between SSSRi's and dementing.
On the plus side, I hear that the dementia epidemic is likely to be generational - that changes in diet and lifestyle, as well as improved general health will see this terrible disease gone in a couple of decades. Can't come too soon. For my own experience I can only say that with the exception of mums current consultant, everyone else seems to have read one leaflet and decided that it's 'the truth'. Frightening.

 

[Aisling]

I should add that these are not only my observations but are shared by a lot of people that I've spoken to at the CH where my mum ended up when Soc Services got bored with her, and at the day care centre, as well as in converstaion with mum's consultant. I have no doubt that some medication serves to dull some behaviours or mask some symptoms, but there are doubts about effectiveness.
In the same way that 'old fashioned' anti-depressants are now known to be linked with the onset of dementias, there are doubts about the benefits and side effects of current treatments. Also about a link between SSSRi's and dementing.
On the plus side, I hear that the dementia epidemic is likely to be generational - that changes in diet and lifestyle, as well as improved general health will see this terrible disease gone in a couple of decades. Can't come too soon. For my own experience I can only say that with the exception of mums current consultant, everyone else seems to have read one leaflet and decided that it's 'the truth'. Frightening.

Can you post the link between SSRI's and Dementia please. I have completed research projects in other areas and understand protocol and ethics involved.

I doubt if " everyone else has read one leaflet and decided it's the truth"

Aisling

 

[LYN T]

I am absolutley certain that it was the multiplication of medication that caused mum's symptoms. After several years, I have finally found a consultant that agrees with me. We are trying to wean mum off the stuff. Medication made mum incontinent. Drugs made her illiterate and inumerate. They undoubtedly caused more problems than they solved. Repetitive behaviour - drugs again. If you love someone who is exhibiting 'signs', please do anything before you allow a cocktail of poisons to be prescribed. There are investigations into SSSRi's for instance, which suggest that these drugs cause dementia. You want to keep that person for longer? Keep them off the dope - that's all it is, dope. Read the side effects - for all of it. If you are somehwre down the road think - when did the behaviours start? was it before he/she started taking that stuff?
Doctors are not Gods shock!'that'. Has anyone actually been made any 'better' by drug treatments for dementia? Doesn't look like it. Prescription just precipitates changes - none positive. Use some common sense. Be gentle, help where you can, do the activity things. In what way do mind altering substances help people who are becoming confused?

My bolding.

Ed, first of all I'm very sorry that your Mum is experiencing such difficulties-it must be hard for her and you.

How are you 'absolutely certain' that the meds caused your Mum's difficulties? I don't intend to be insulting but have you had specialist mental health/Dementia training? You say you and your Mum's new Consultant are trying to wean her off the meds-but how far advanced is this? Without completing the withdrawal you can only assume that she will improve?

My late Husband was on drugs-without them his life/behaviour would probably have been more chaotic and damaging to his quality of life-I never thought of them as being 'poison' or 'dope' - I viewed them as being necessary rather than a poison or an illegal substance! However, my late Husband's difficulties started before any medical/chemical intervention. I would be very grateful if you could point me in the direction where you gained your information.

I have to agree that Doctors are not Gods but I would defer to their years of medical training and knowledge. They definitely have more experience than your average Jo Bloggs and I'm afraid experience and knowledge sways me most times. I'm sitting on the fence about whether Dementia drugs make someone better; I agree that taking Aricept doesn't make someone 'better' as then we would be applauding a 'cure', I do know that Carers have reported on this very Forum that their loved ones showed positive reactions in that their progression has slowed down (in some cases). In my Husband's case it badly affected his asthma so it was stopped.

Yes, I always showed 'common sense' with regards to my OH's medication (why wouldn't a Carer do that) I researched and asked questions and sought Pete's Consultants opinions. We discussed, I read and we reached a decision. Some meds were used and some were never talked about again. We all wanted the very best for Pete.

I like to think that I was gentle and helped where I could, but doing the 'activites'? Well that was a no go area long before Pete went to a CH. His brain had died so much that he couldn't connect with anything-but as I say I was 'gentle' and I held his hand a lot-so did his lovely carers. By the way Pete was a College Lecturer and a fitness fanatic so I assume he had done all the recommended things that are supposed to keep Dementia at bay?

Pete was just dealt a cruel hand-he was 68 years old when he died.

 

[jugglingmum]

My mum is on aricept, and since she started taking it, some things definitely improved and there is little decline, my only regret is she didn't recognise the signs of dementia herself (she knew she had major memory issues) and go to the GP herself, partly due to the stigma of madness many associate with dementia I suspect.

Reading all the tales on here of the difficulties people experience with later stages there are meds worth taking.

There are many GPs that will act as 'lone wolfs' and not follow the general consensus of up to date meds and what they can do (my late FIL was one in his time as a GP). It sounds to me that the problem described lies with a GP not being prepared to listen and do his job properly.

 

[Aisling]

My mum is on aricept, and since she started taking it, some things definitely improved and there is little decline, my only regret is she didn't recognise the signs of dementia herself (she knew she had major memory issues) and go to the GP herself, partly due to the stigma of madness many associate with dementia I suspect.

Reading all the tales on here of the difficulties people experience with later stages there are meds worth taking.

There are many GPs that will act as 'lone wolfs' and not follow the general consensus of up to date meds and what they can do (my late FIL was one in his time as a GP). It sounds to me that the problem described lies with a GP not being prepared to listen and do his job properly.

Aricept certainly kept OH's alyzheimers on a plateau for quite some time. OtheR meds have also helped him. I get migraines and doctor has prescribed meds that work for me.

Aisling
.

 

[Beate]

I have to admit that I personally also don't think much of any drugs ending in -zepam. Often there are side effects for which other meds are described, then these have side effects for which other meds are prescribed and before you know it, the patient is on a multitude of unnecessary drugs.

I have no doubt that certain drugs help some people some of the time but not for everyone all of the time and doctors should be very careful what they prescribe, especially for elderly people. The Beers Criteria for Potentially Inappropriate Medication Use in Older Adults is a mile long. However, whether any of these meds actually cause dementia is debatable, though they can be harmful once dementia is present (for example through increased delirium or falls).

Dementia meds like Donepezil do help in the beginning, but not for ever. I think everyone is aware of that.

 

[LYN T]

I do agree with you Beate. The tragedy is that nothing seems to have progressed since this med was introduced. I (and everyone else) just hopes that a cure, or more effective meds, are found soon.
XX

 

[marionq]

On the plus side, I hear that the dementia epidemic is likely to be generational - that changes in diet and lifestyle, as well as improved general health will see this terrible disease gone in a couple of decades. Can't come too soon. .

For a cynic and a pessimist you are amazingly optimistic about future events. Personally I'm fairly cautious about these predictions.

 

[Bunpoots]

My dad's been taking donepezil which may or may not have kept his Alzheimers at bay but it certainly seems to have increased his interest in young women!! Not funny

 

[jknight]

We, as sufferers, are all individuals on very different journeys where only the destination is common. There are no one size fits all symptoms, nor drugs, nor types of care, nor types of support groups. nor quality of professionals etc. Any one drug can have a number of differing levels and for some help, for some do nothing, for some other be detrimental. Some Gp's are great, some not, some highly experienced, some not but if anyone is not happy with how 1 GP deals with a situation, go elsewhere or ask to see a consultant/specialist.
It will never end but it can be better so push the GP's to learn more. The government wants them to put dementia higher on their priority lists so force the issue, push for more and better every time you visit.

Wayne

Wayne,

Just wanted to say that I think you are totally awesome!!

JK

 

[LYN T]

I should add that these are not only my observations but are shared by a lot of people that I've spoken to at the CH where my mum ended up when Soc Services got bored with her, and at the day care centre, as well as in converstaion with mum's consultant. I have no doubt that some medication serves to dull some behaviours or mask some symptoms, but there are doubts about effectiveness.
In the same way that 'old fashioned' anti-depressants are now known to be linked with the onset of dementias, there are doubts about the benefits and side effects of current treatments. Also about a link between SSSRi's and dementing.
On the plus side, I hear that the dementia epidemic is likely to be generational - that changes in diet and lifestyle, as well as improved general health will see this terrible disease gone in a couple of decades. Can't come too soon. For my own experience I can only say that with the exception of mums current consultant, everyone else seems to have read one leaflet and decided that it's 'the truth'. Frightening.

If some meds serve to dull some behaviour then surely they are effective

Dementia likely to be generational and will be gone in a couple of decades due to changes in diet and lifestyle? Sounds too good to be true I will Google and try to find the research on this. I may just hit the lettuce whilst on that exercise bike

 

[Padraig]

The other day I was reminder that my wife suffered from Alzheimer's for more than 14 years. By the time I came to accept it as a fact, it continued for a further twelve years. At no stage was she offered any medication for AD. She was however prescribed medication for depression: Prozac.

My approach to that was to question the underlying causes of her depression and did my best to eliminate the cause. Right up to the end of her life she was on no medication for AD.

It seems to me that medication is considered the answer to every illness and we are coming up with many 'new' illnesses. I'm on another website for cancer and again the answer to the many problem is to prescribe one kind of medication or other. The drug companies are flourishing.

The 'experts' on cancer give those who have had the same operation as I a life expectancy of a year upward. I'm on no medication and in August I'll will be six years post operation. It's a case of trial and error and the errors have hurt, but I've learned.

Yes we are all different and thank God for that. I'm of the belief that no matter what trials we encounter in life they contain positives and negative aspects. That approach had been, and still is my education. My favourite song: "Always look on the bright side of Life."