Donepezil advice please.

[Sue17]

Hi
Mum has been prescribed Donepezil a few months back but the mental health doctor advised that she needs supervision taking them at night. I have been on holiday and am going away again in another two months (I really do need the respite! ) and mum does not want a carer and even if she did allow it I'm not sure they would be able to supervise a 'before bedtime' tablet. Therefore I have not started her on them yet as the hospital doctor said there's no hurry but when she does start them they need to be continuous.
At the moment mum manages her general medication, for blood pressure, with the tablets being in daily boxes and the boxes filled up for her by me or my brother when I'm away.
My brother is not local but comes over to her a few times a week when I'm away to give her shopping and cook her a decent meal. As she can only eat cold grab food /sandwiches when she is on her own if I am not around - Although she tells me she buys herself a ready meal in the local shop while I'm away, as she can still walk to the shop, but not sure if she does or if she could remember how to cook it as she has a problem even turning the oven on when I ask her to warm the oven up for me to cook her dinner.
She also says she does not like cooking in the microwave although she used to use it before her Dementia took hold. She cancelled her meals on wheels which has made my life more difficult.
However the question is - Does anyone have a family member living on their own who is on this tablet and are they able to take it themselves?
I understand that I would need to closely supervise her in the first few weeks for side affects on this tablet but I was wondering if it is correct that someone has to physically give her this tablet at bedtime as that could be impossible to do every single night .
I have not been absolutely confident with the advice of the mental health specialist as she always seems rushed and not entirely understanding of situations with dementia. Therefore I would be grateful for some personal experience of caring for a PWD who has been prescribed this tablet.
Also, sorry to go on but does the tablet help with aggitation/ hallucinations /paranoia and anxiety , particularly in late afternoon and evening (often called sundowning )? This seems the most pressing problem I have and I wonder whether another tablet would be better to calm mum down at this time of day?
I have read good reports on this forum of Risperidone for anxiety like this and I do have a call back from mums GP on Monday to ask him if mum can possibly be prescribed this tablet as the 'sundowning' is causing me so much stress and mum so much distress .

Thanks in advance for any advice or personal experiences.

 

[Philbo]

Hi Sue 17

My wife has Fronto temporal dementia (FTD) and when she was first diagnosed at the memory clinic, the said that she could try Donepezil (5mg) but as this was not licensed for FTD, we had to sign a form to say we were willing to try it. The consultant said that although it is for AZ, some patients with other forms of dementia found it helped.

Anyway, she started taking it and thankfully, there were no side effects and it did seem to help at the time with her speech.

After a couple of months, the consultant said that we could try increasing the dose to 10mg but we first had to stop taking the tablets for a month, to check if we noticed any deterioration in her symptoms.

We did this and after I said that I thought her speech had got worse, she started back on 5 mg at first, then later on 10mg. On the next visit, I said that I didn't think there was much difference on the higher dose so she has now been on 5mg for the last 2 years.

Now I don't really know if they are still helping or not but it's one of those cases where you don't really want to stop, in case it makes things worse?

My wife's sundowning gradually disappeared and thankfully, she's a very good sleeper (at the moment, anyway).

Best wishes.
Phil

 

[Moggymad]

Hi I used to ring my mum every am/pm to remind her to take her meds. When she was prescribed donepezil it was only one dose in the am but mum would forget she had taken it & open up another day on dosset box & take that as well. As getting a meal also became a problem I had to get help through soc care who don't just do med visits, had to be part of a care package. Mum resisted a lot but in the end had to be accepted as deteriorated so much. The time I went to mum's & found her like a zombie cos she had overdosed i knew something had to be done fast.

 

[jknight]

Gosh Sue17, how envious I am that you can get away for a holiday! I saw my dad through cancer and not long after he died mum was diagnosed with alzheimer's. We haven't had a holiday for such a long time.
How long have you been caring?
You really do need to start the Donepezil as soon as possible. It won't reverse the symptoms BUT it will slow the progression. My mum takes it in the morning.
Meals on wheels. I have an agreement with them that only I can change the arrangements .
Are you sure your mum is taking her medication correctly? If she is at the sundowning stage I would suggest you really need to keep an eye on her medication. My mum has taken an array of tablets since her late 40's. I assumed taking them would be firmly in her long term memory. Wrong! Mum needs to prompted. I keep her medication at my house so she doesn't forget or overdose.
Memnatine is the drug usually prescribed for sundowning.
Hope this helps

 

[Sue17]

It's interesting to know that it appears that the Donepezil can be taken in the morning, which was not the impression that the hospital doctor gave me. It would certainly be better for us as I am with my mum a lot more in the daytime and I am not there at night.
As I have mentioned in previous posts Mum is fortunately, at this stage, able to look after herself generally and she has a community alarm set up with smoke alarms/CM alarms and a personal call button.
In answer to JKnight, I have been caring for mum, with the help of my husband, for about 2 years now but the last 9 months or so she has had more of the agitation/hallucinations / paranoia type problems, slowly getting worse - We have not stopped our holidays and don't want to as mum has been OK with the help of my brother and our daughter and son who both live locally.
I am just getting to the stage of looking at carers and possibly introducing them gradually to get her used to having them but I know it's going to be a struggle to get her to accept - I do know everyone has this problem.
I am definitely going to discuss a medication for the anxiety/agitation etc. when I talk to her doctor tomorrow as mum is even saying herself that she "needs 'a tablet' to stop feeling like this" (her words!).
Thank you all for your help and advice - I'm sure I will have lots more questions.

 

[Reallife]

My Dad also takes Donepezil in the morning. It was suggested he takes it in the morning because it can cause vivid dreams when taken at night.

 

[Spamar]

OH also took donepezil, and all his other tablets, in the morning. Not sure why, maybe cos it was more convienient!

 

[jknight]

It's interesting to know that it appears that the Donepezil can be taken in the morning, which was not the impression that the hospital doctor gave me. It would certainly be better for us as I am with my mum a lot more in the daytime and I am not there at night.
As I have mentioned in previous posts Mum is fortunately, at this stage, able to look after herself generally and she has a community alarm set up with smoke alarms/CM alarms and a personal call button.
In answer to JKnight, I have been caring for mum, with the help of my husband, for about 2 years now but the last 9 months or so she has had more of the agitation/hallucinations / paranoia type problems, slowly getting worse - We have not stopped our holidays and don't want to as mum has been OK with the help of my brother and our daughter and son who both live locally.
I am just getting to the stage of looking at carers and possibly introducing them gradually to get her used to having them but I know it's going to be a struggle to get her to accept - I do know everyone has this problem.
I am definitely going to discuss a medication for the anxiety/agitation etc. when I talk to her doctor tomorrow as mum is even saying herself that she "needs 'a tablet' to stop feeling like this" (her words!).
Thank you all for your help and advice - I'm sure I will have lots more questions.

Ah! There is just me & my husband caring for mum. We desperately need a break but there is no way we can get away.
Am pleased that you have the backup to allow you a break

 

[Bagheera]

My mother is also prescribed Donepezil (along with low dose aspirin and a statin) she takes all of them in the morning. We started with boxes with days of the week on them but Mum had no idea what day it was and several times took an overdose. We have since found a wonderful disc shaped box that alarms and rotates so the tablets are only exposed for the said day. It is on the same principle as the cat feeding trays. You can programme it to do once a day, twice a day or 4 times a day. I think my brother got it from the states but I have seen a similar one on Amazon. The very expensive ones even can be programmed to ring your mobile if it has not been tilted within 4 hours.

My mother had problems with nausea on starting the drug and cardiac conduction problems so ended up with a pacemaker but it definitely did help her for 18 months. She is still on it but I am not sure if the effects last as long now.