Anticoagulants and dementia?

[looviloo]

Hi, I wondered if anyone has experience with anticoagulants? My dad has vascular dementia, and over 10 years ago had a major heart operation including valve replacement. Since then he's had atrial fibrillation. His new doctor has offered him one of the new types of anticoagulants (not warfarin), since dad is only on aspirin as a blood thinner at the moment. Because of dad's dementia, I'm the one expected to make the yay or nay decision :-/.

It seems like a big step given the risks (excessive bleeding etc) but the alternative might be a massive stroke. Dad's 87 and already had a serious fall which was probably stroke related, and if he'd been on anticoagulants at the time it would likely have been fatal.

The phrase 'between a rock and hard place' springs to mind! Any thoughts?

Thanks!

 

[maryw]

They are life-saving. A cardiologist told my husband that he should never have been allowed to come off warfarin (past history of AF and pulmonary embolism). He hated the time-consuming regular checks and asked to come off warfarin. His arrhythmia nurse agreed (I was always surprised ....)The worst happened and he had a major stroke, which has been life-changing. He is on warfarin for life now. The other drugs don't need such regular checks but cost more.

 

[looviloo]

Thank you maryw

So sorry to hear that your husband's time-off warfarin ended as it did, and yes, the newer drugs do seem better in that they need fewer checks.

My main concerns are: dad has already had one serious fall (and smaller ones before that); he has a heart valve replacement which some studies show as a contraindication; he has some difficulty swallowing and against all advice insists on crunching his tablets - the anticoagulants must be swallowed whole; he has been treated for a stomach ulcer, another contraindication; and if he developed any pain or symptoms of internal bleeding then I'm not sure he'd recognise it.

I'm actually not sure what's prompted the GP to suddenly decide to offer this treatment given that dad was in hospital last year following his fall and nothing like this was mentioned.

I have an appointment with the GP myself to discuss this a bit more. To get his opinion without dad there and to address the concerns. But it's very helpful to hear first-hand experiences.

 

[Amy in the US]

Disclaimer: not a medical professional, so don't take my word for it, and remember what they say about free advice and getting what you pay for! And no, no personal experience with anticoagulants, or your situation.

Looviloo, I would say that's the classic rock and hard place. I think you need more information and guidance from the doctor, at least some idea of the risk of a massive stroke versus the risk of bleeding from falls, and how likely he is to fall again, et cetera.

Also, sorry I can't recall, but is your dad at home, in a care home, or some other setting? What kind of supervision? I'm just trying to think about, if he fell, or had another problem, who would be there and what would likely happen?

I would also question the doctor carefully about why one of the newer anticoagulants, and not warfarin (Coumadin here in the States but I don't know the brand/trade names used in the UK, sorry). If there is a clear reason why one would be better than the other, fine, but they should explain this to you. I know warfarin takes a fair bit of monitoring and caution, but it's been around a long time. Sometimes tried-and-true is better, sometimes not.

I would also talk to the doctor about how you might take the dementia into consideration making this decision about the medication. As you say, it's not an easy decision. But the doctor should be able to give you some guidance or insight about whether the possibility of strokes, falls, or the progression of the dementia is the biggest worry right now, health-wise. Or you might have an idea of what is most important to try to avoid/manage. At age 87, and with vascular dementia and a history of cardiac issues (not sure about other health issues), I am guessing it would feel very challenging to know what to focus on sometimes. Is it possible to get the doctor to discuss what actions, medications, et cetera (or lack of them) will provide your dad with the best possible quality of life for as long as possible?

I'm re-reading this and thinking it's not terribly helpful; all questions and no answers.

Wishing you all the best.

 

[Amy in the US]

Oops, we were posting at the same time. Let me read your reply to maryw and see if I have anything else to add.

 

[Amy in the US]

OK, let me see if I can pull my thoughts together.

I'm relieved to hear you have an appointment with the GP. What I would do is say, I'd like to discuss the issue of starting my dad on anticoagulants as recommended at his last visit with you.

Then I'd outline his medical history in brief, in case the GP missed something in the chart: 87 year old male, history of vascular dementia since (whenever), major fall (date) with (fill in the injuries/aftermath, such as x days spent in hospital and so forth), valve replacement in 2004 and subsequent history of atrial fibrillation, list the minor falls, list the stomach ulcer, et cetera. Go over the meds he's currently on. Definitely bring up the difficulty with swallowing pills.

Then I'd ask this list of questions:

-given his medical history, why are you recommending an anticoagulant now, when this was not recommended in the past?

-please outline the risks and benefits, keeping the vascular dementia (and his inability to communicate side effects) firmly in mind. Be sure to ask what his prognosis is, if you do not start an anticoagulant.

-if you feel an anticoagulant is still indicated, please explain how he would be monitored, and how the issue of him not swallowing will be addressed

-if you still feel the anticoagulant is indicated, please explain your choice of one drug over another

You may not have to ask all these questions, as the GP may cover some or all of them when the two of you start talking, or there may be information you haven't heard.

On the other hand, there may be items the GP missed out or didn't weigh carefully when recommending the anticoagulant.

I hope something in there was helpful and not just distressing or confusing. I'm sorry; this is terribly difficult and making these decisions for other people is just never easy.

 

[looviloo]

Thank you Amy, I really appreciate your time in writing this out and it's very helpful for me, since I'm really just getting my thoughts in order at the moment. Yes, making decisions on behalf of someone else is very tricky. My husband thinks that it's a little unreasonable of the GP to put me in this position, since if there is a medical need for the anticoagulant then it really shouldn't be my decision, should it???

So I need to ask the questions you've listed when I see the GP next week. I wonder if he is aware of all of my dad's history (for instance, the GP asked what type of heart valve replacement dad has at our last meeting, and I'm not sure if he knows about dad's fractured shoulder).

The question about prognosis is an important one. Difficult, but needs asking.

I really don't have all the information yet so weighing up risks and benefits is impossible. I just know that if I resist the treatment, and dad has a stroke, then I'll feel dreadful. Then again, if I agree to it and dad has a fall and a potentially fatal bleed, I will feel equally dreadful :-(.

-

Forgot to say, dad is in a care home having moved there after his last fall. He gets excellent care but is still very mobile with a degree of independence. The carers would look for any odd symptoms, and I've discussed this with them, but pain is not something dad really feels anymore, so he might not think to alert them if (for instance) he had stomach pain.

 

[nae sporran]

Hullo Looviloo.

My OH is on Warfarin, after aspirin did not prevent her second stroke. The pharmacist was actually suggesting a reduction in the dosage of aspirin a month or two before that. She hates the regular blood tests and would probably never take any of her tablets if I did not remind and prompt all the time.

You have possibly already taken this into consideration, but I suppose if the care home are responsible for making sure your dad takes tablets and has regular blood tests there should not be a high risk.

 

[looviloo]

Thank you, nae sporran . The care home makes sure dad takes all his meds (he was stockpiling them prior to moving there, but we didn't realise...). So taking warfarin wouldn't be a problem, except that the care manager says it might restrict his freedom a little because it requires more frequent checks. Dad gets upset about any change to routine so waiting for the nurse to arrive, for instance, can be a problem.

I don't know why the GP has bypassed the use of warfarin though, and suggested these other meds. Maybe it's simply because they require less checking.

 

[maryw]

Found this, makes interesting reading:

http://www.drugwatch.com/2014/05/19/fda-blood-thinner-risks/

 

[looviloo]

Found this, makes interesting reading:

http://www.drugwatch.com/2014/05/19/fda-blood-thinner-risks/

Pradaxa has had quite a lot of bad press. Of the three drugs that dad's being offered, Eliquis seems to have the best safety record. But none of them can be reversed in the event of a bleed, unlike Warfarin. It's a dilemma.

 

[Amy in the US]

Looviloo, you are quite welcome. Feel free to just print that off, add your own notes and comments and questions, or not, or use whatever I wrote in whatever way works for you.

I agree you haven't enough information to weigh up the risks and benefits. I also think it's very smart of you to make sure the GP has all the pertinent facts about your dad's medical history.

I am sorry if the mention of discussion of likely prognosis is upsetting. What nonsense am I spouting? OF COURSE it's upsetting. I'm just sorry.

I am hoping that after you talk to the doctor, you will have more information and a clearer idea of what you might do. I also would not hesitate to tell the GP, about the upset and uncertainty you have been feeling due to this situation! (But that might just be me.)

I definitely hear on you feeling dreadful either way, should something happen. It's just a wretched situation. Having said that, please try to keep in mind that you have done what you can to keep your dad as well and as safe as possible. I am sure the care home know he is a fall risk and do everything in their power, to keep your father safe. Nobody wants him to get hurt. Accidents do happen, however, and it would not be your fault. This is not to say that you might not feel responsible and/or guilty. You might well feel that way. But we are here to try to remind you that there is only so much any one of us can do.

It's all so easy to say, and all so difficult to do. I hope you will keep us updated, if you wish to.

 

[Ameliasmama]

Pradaxa has had quite a lot of bad press. Of the three drugs that dad's being offered, Eliquis seems to have the best safety record. But none of them can be reversed in the event of a bleed, unlike Warfarin. It's a dilemma.

My Dad was changed after 10 years+ on aspirin to Eliquis/Apixaban. Apixaban is the name used in the UK. He had a car crash on 30th November which resulted in a bleed on his brain, they did manage to reverse the effects of the Apixaban before he was transferred from resus to the trauma ward and it was reintroduced once he stabilised. He was on Apixaban for coronary artery disease and AF. He didn't die as a direct result of the crash, but he was still in hospital when he had a severe heart attack a month later. I do wonder had he still been on aspirin would he have had the bleed on his brain and would he have had the heart attack which led to his death. Who knows.




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[Boldredrosie]

Just my experience & not a medic, so please bear that in mind.

Mother 85 dementia & permanent AF (plus other conditions) - had been on warfarin for years but with the dementia and mobility issues getting her checked regularly was difficult (& she kept hiding the bloody book) as was compliance and all the fiddly changes to dosage. Plus, her eating is hit and miss and that affects the warfarin.
She can't have aspirin because of GI issues.
To be fair to the anti-coag clinic they tried hard to keep her on the warfarin but in the end we moved to the NOAC because there's no trips back and forth to the clinic, the dosage is constant and that makes compliance easier.
So far no side effects but as my son once observed; his grandparents are statistical outliers -- what kills other old boys and girls, my parents shrug off.

 

[lin1]

Hi Looviloo.
In addition to the list of questions , I would make a list of things you feel are pertinent, things like your Dads inability to swallow pills, also your worries.

Tbh I have found that it's best not to assume that the doc knows everything they should about your Dad.
At my GP practice they are very good, but I find I have to remind them about my poor kidney function when they want to put me on or change my meds, one time I was told to take some cranberry juice every day, I'm diabetic.

I am no medic ! My mum had severe dementia and was on Wafarin. She had a few problems with her heart, and tended to have heart attacks due to blood clots in the heart.
She became terrified of the frequent blood tests due to her bloods always too high or low, so we had to make the decision no more blood tests, this meant going onto a daily dose of 75 mg Aspirin , at that time their was no other options available.
At the time the GP explained that Aspirin was not as effective as Warfarin ,but for us it was the lesser of the two evils and mum did not develope blood clots even though she was bed bound.

After listening to the doc you need to weigh up the pro's and con's , I too would be worried about severe bleeding do to falls.

 

[looviloo]

Thanks so much everyone, this forum is really a life-line at times. I'm SO tired today; even though dad is now living in care there still seems to be a lot to do and stress with it.

Amy, I'd printed your questions out even before you suggested it! And I've learned from past experience that we can only do our best, but its feels good to be reminded of that... thank you.

Ameliasmama, your poor dad. I'm sorry to hear what happened. Life throws us these curve balls and we just do what we can to dodge them. As you say, it's impossible to know what might have happened had your dad stayed on aspirin - I guess we just have to make decisions as we're presented with them and move on. No regrets.

Boldredrosie, thanks for sharing your positive experience with the NOAC. Not everyone will suffer side effects, and it's great that the med suits your mum. Makes life a tiny bit easier all round .

lin1, I've had similar experiences with GPs to you, especially when it comes to my dad. So I'll be sure to make him aware of all the concerns and past history. I'm glad to hear the aspirin was effective for your mum - I know it carries a higher stroke risk than anticoagulants, but my dad's medication/health is settled at the moment. I don't want to upset everything without good reason!

 

[looviloo]

Quick update: It's been over a year since I started this thread - we decided not to go ahead with the anticoagulant (apixaban) in the end due to too many unknowns/risks.

Dad's doctor has since changed however, and surprise surprise, this issue has been raised again. So I'm under pressure to agree once more to the use of apixaban. We've raised the same concerns, obviously, but have to make a decision soon. I've discussed at length with the care home manager, and we've a list of pros and cons. We'll probably refuse (again). BUT what I'm really posting about, is:

This week, I attempted to ask dad about his thoughts on it. I gently raised the topic three times, each time with the conversation veering off onto something else entirely <grin>. Just when I'd given up, dad looks at me and asks what the new medication would be for... "it's a blood thinner dad, like warfarin". Oh, he says. Let's keep the status quo, he says. "So you don't want the new drug then, dad?". No, he says, I'm not being anyone's guinea pig!

I'd only mentioned in passing it was a relatively new (possibly better) drug, and thought he hadn't heard anything I'd said! Dad still surprises me sometimes .