Alzheimers...any experts...particularly medical folks

[take5]

Just a cry for help from me.

My Dad was diagnosed with this horrible disease a few years ago, and things have being going downhill since then.

I know that this is a progessive disease and things get worse, but Im kind of floundering at the moment and would welcome any input.

He has lived on his own for many years ( he is 84 ) in sheltered accomodation, where he has looked after himself. cooking , washing etc , etc

But about 1 year ago we had to put other stuff in place. This help has gradually increased, and he now gets 3 visits daily to help with all aspects of his life.
This is a mixture of me paying privately for some stuff and social services paying for other stuff.
All aspects of his life are now helped/supervised.

That side of things is all fine and Im not looking for advice in that area.

Im looking for specific advice, just on the medical side, if possible.

I have full power of attorney and pretty much make all choices now in relation to his life.
About 6 weeks ago we had a review of his position, including the Dementia Consulatant who looks after Dad.
He decided that his condition merited a doubling of the dosage of the drug which slows down the worsening condition. Also to put Dad on anti depressants. I went with it, and agreed.

Since then , we seem to have had a marked deterioration in every way.
increased confusion, frustration, sadness etc etc.
I now receive daily tearful phone calls. Crys for help. Heartbreaking stuff, as I live 5 hours away, and only manage up once a month, or in emergencies !!

As I said, i know this is only going one way, and that there are no rules about how quickly this occurs.

It is just that things seemed to have changed so quickly since this latest drug change. The mental health team want to give the new drug regime longer.

Im really not keen to argue with a Dementia consultant............. But......

It may just be a coincidence and a natural part of his decline....but it doesnt feel right.

Any thoughts, please

[struth]

I would certainly speaking again to this consultant and his gp too. May well be that the extra meds are not suitable or need adjusted. Dont just accept what they say, as they make mistakes like everyone. The time may come when a home may be only viable alternative but at moment i would be trying to get his meds adjusted or changed.
Ask about weaning him off the extra ones and see if there is an improvement etc. Sure his/your gp will give you support

[walpurgis]

Sorry to hear this Brian. I can't advise, but I do sympathise, we're going through a similar situation with the 93 year old mother in law. My wife is now having to stay with her indefinitely, as she can't be left on her own.

[Firebottle]

I'm not medical at all but I don't see why the anti depressants come into the equation.

I have lived through dementia with my father so I know of some of the problems. Best wishes for an improvement.

[Clifford.T Ward]

The only help I can offer is that people who have the condition have been shown to benefit from music therapy, it helps them to show the progression of the disease and helps them make the best of their clearer times .....

[The Black Adder]

I'm not sure if my mum has got it. Spooky, I've just called her doctor about this...

She is more depressed this time of year. As soon as the clocks change it really takes hold. It could be S.A.D but the other thing she really battles with is the death of my father in 2005. I can't talk to her even now without her bringing him up. And yes, tearful and confused on the phone also.

She's a very proud person and won't speak to anyone about it but it's getting me down and so something has to be done to help.

Best wishes to you and yours.
Jo

[ReggieB]

Have you consider posting on the Alzheimers Society forum (http://forum.alzheimers.org.uk/)?

[archiesdad]

My mother suffers from this dreadful disease and went into a home approx 18 months ago, her meds have been tweaked up and down and some changed as they can react badly together in different people, she is on anti depressants but it took several attempts to get the mix correct. One of the biggest improvements came(once she'd settled in) came because she had company all day if she wished and simple activities to pass the day. It's difficult for all of us but at least I don't worry about her nearly so much now. It's a long process and it needs a dedicated doctor to persevere to get the meds just right, at least in the home she has 24 hour care and help if she needs/wants it, good luck to all.

P.s. Discovered urinary infections can cause lots of problems to sufferers, easy to get checked and treat.

P.p.s. No way an expert but hope I can offer a little help or just hope.

[take5]

Thanks to all for your input and support. It helps.

Im going to contact the Dementia Consultant today, to have a chat about Dads downward turn.

Thanks again

[Maouna]

Hi Brian sorry to hear this,we all have someone we know and love with this condition. My only support I can give you is PLEASE try to have a look for a program called THE PROJECT in AUSTRALIA VIEWED ON 13/12. 2016 about the Australians making promising progress on ALZHEIMERS.

[Reffc]

Brian,

I am sorry to hear this. I am going through the exact same thing with both of my parents, one of whom my wife and I act as full time carers, the other is in care due to other medical needs but is visited regularly by us.

We have been down the exact same road and I am happy to discuss things with you if that would be any help.


Having re-read your post, there are a few observations which raise one or two alarm bells about the diagnosis and treatment:

Alzheimers itself is a progressive disease and not subject to sudden down-turns. It is caused by clumping of proteins in the brain over time which shut off neural pathways, disabling certain brain function and memory recall, particularly shorter term, but depends where it forms. Dementia takes several forms (vascular, DLB, mixed, Parkinsons etc). Vascular dementia is usually the result of repeated TIAs or strokes and the effects can be reversible provided that Alzheimers isn't too advanced. Sudden worsening of the condition is usually a sign of several things:

Stroke: easily diagnosed

DLB or other form of dementia which can worsen in steps rather than a gradual worsening. Usually CT scans combined with blood tests and carefully designed memory and logic tests combined are used to form a diagnosis and prognosis.

Urine infection: This can and often does give symptoms of increased anxiety and confusion and is easily diagnosed and treated following a blood test.

I am concerned that without these steps, your father has been prescribed anti-depressants. It may be a quick fix for the clinicians, but the side effects need bearing in mind and they can of course cause more problems than they help with. Sodium Valporate used for the treatment of Epilepsy is sometimes prescribed to Alzheimers sufferers to ease anxiety and it is very effective and safe. It is a better alternative in most cases that than anti-depressants. We have discussed this in some detail with my father's Alzheimers specialists. It is normally prescribed in combination with a drug called Memantine Hydrochloride, used as a more effective drug to slow Alzheimers when Donpizel or Aricept no longer work well. Memantine is often started at a 5mg dose and worked up with a doubling of the dose every few weeks until a change for the better (a levelling of the condition) is noticed, up to 20mg/day.

Ultimately, with my Dad, we had little choice to house him in s specialist care home with nursing care due to the post operative effects of cancer operations as my Mum couldn't cope any more, and now, the world being the cruel place that it is, she also has the condition, so I do empathise with you. It is not easy and is soul destroying to see those you love with this terrible illness. If I can be of any help, please just contact me.

Please call me (my best contact numbers are given on my website). I will be glad to assist in any way that I can be of help to you.

[jandl100]

No advice to give as I thankfully have had no nearest and dearest yet affected.
But you certainly have my concerned best wishes.

-- actually, the one piece of general advice I would give is, as has been said already, do challenge the medics if you are unhappy with what is going on. They aren't perfect, and some are considerably less than that, sadly.

Good luck.