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Husband newly diagnosed with mixed dementia

Jules1969

New member
Jul 23, 2021
4
0
Hi, my husband just been diagnosed and the dr has sent us tablet leaflets to see which one he wants to go on. How can I choose? My husband has loads of health problems - blind/had stroke/angina/asthma/diabetes 2 (in remission) sleep apnea.
So how can I pick one that will suit his other 24 tablets? Should this not be up to GP? Also do tablets slow down progression or do they just help with managing? I know there is not a cure. Any help from someone would be great as I am feeling totally overwhelmed with it all. Thanks.
 

karaokePete

Registered User
Jul 23, 2017
6,256
0
N Ireland
Hello @Jules1969 and welcome

My wife was diagnosed with MCI over 5 years ago and the diagnosis changed to Dementia within about 9 months.

At the MCI stage my wife wasn't prescribed anything apart from a change of meds for her underlying anxiety and depression. As soon as the diagnosis changed to dementia both Donepezil and Memantine were prescribed and she quickly seemed to be a bit 'brighter'. The dementia has progressed at a slow rate over the last 4-5 years and there isn't any way to tell if that pace of progression has been due to the meds.

One interesting thing that happened in the early days was that my wife began to display a physical symptom that was thought to have been brought on by a side effect to the Memantine so that med was stopped and her dementia deteriorated significantly. It turned out that the symptom wasn't a side effect and the med was restored, as was her previous state. This showed that at that stage Memantine was having a very good effect.

I have to agree that it's up to the GP to agree any meds in line with medical history.
 

silkiest

Registered User
Feb 9, 2017
365
0
Hi @Jules1969,
there is no medication to slow down the vascular part of the dementia, but his vascular risk should be managed - i.e. medication for cholesterol and blood pressure if needed and regular monitoring of his blood sugars. Some doctors will prescribe for the alzheimers part but these are usually started and initially monitored in specialist units such as memory clinics or Old peoples mental health. If the diagnosis has been done by your GP without specialist assessment I personally would be asking for a referral as some drugs can only be started in secondary care.

If your GP is any good you will only have been sent information about medication that is acceptable with the medication your husband already takes. I would look at the main side effects and if there is nothing there that makes you immediately think he can't possibly take that that helps your decision making. Please phone and request an appointment to discuss his medication. Any medication has risks and benefits, this hopefully is just your GP's way of letting you know that so you can have an informed discussion before medication starts.
In my families case mum and I had this discussion face to face with an Advanced Nurse Practitioner in memory clinic and the first choice medication was ruled out immediately by mum due to the side effects and her other health conditions .
I hope this helps you decide what you need to do.
 

Whisperer

Registered User
Mar 27, 2017
299
0
Southern England
Dear @Jules1969

Honestly I am shocked at the GP‘s behaviour. With no medical training yourself how can you guide your husband on what is best to take?

I can only speak from experience of caring for my mother who never had a formal Dementia diagnosis, but with her history of high blood pressure and heart problems the GP advised she most likely had Vascular Dementia. Mum would not go back to the Memory Clinic after a diagnosis initially of Mild Cognitive Impairment. We moved very far from that stage over a nearly six year period before she died.

The GP advised mum’s BP and heart problems meant there were no treatments available to help her. Even if she had mixed Dementia the drugs to treat Alzheimers tend to push up BP which would increase mum’s risk of a stroke, etc. Ultimately she died of heart failure. Mum was on four BP medications and the readings were still not great.

I am no medical expert but I trusted our GP and he was very good with mum and me in the caring role. I suggest at the very least clarify if the drugs offered might impact on any BP or heart condition your husband has. The problem is Dementia is a no win situation. Even if they might aggravate the other conditions the upside of their potential effect on slowing the Dementia might be worth the risk, but I would hate to make that judgement call. If the GP will not advise see if you can contact the Memory Clinic directly and seek advice. Twenty four other medications is a hell of a lot of chemical reactions.

Hope the above helps. Try not to feel totally overwhelmed. The problem here is the GP just leaving you to decide. Is there another GP in the practice you could try and speak to.
 

Moggymad

Registered User
May 12, 2017
613
0
If your husbands current meds are supplied by the chemist would the pharmacist be able to help you ?
I've never heard of this being done before & am a little surprised to say the least if the GP is expecting you to decide
 

Jules1969

New member
Jul 23, 2021
4
0
Hello @karaokePete. Thank you for your reply. It sounds like the medication did work in a good way. I have phoned my GP today and asked to see him to discuss my husbands options and see if he would tell me about which one he thinks would be best with all his other medication.Hopefully that will better than me guessing. @Jules1969 and welcome

My wife was diagnosed with MCI over 5 years ago and the diagnosis changed to Dementia within about 9 months.

At the MCI stage my wife wasn't prescribed anything apart from a change of meds for her underlying anxiety and depression. As soon as the diagnosis changed to dementia both Donepezil and Memantine were prescribed and she quickly seemed to be a bit 'brighter'. The dementia has progressed at a slow rate over the last 4-5 years and there isn't any way to tell if that pace of progression has been due to the meds.

One interesting thing that happened in the early days was that my wife began to display a physical symptom that was thought to have been brought on by a side effect to the Memantine so that med was stopped and her dementia deteriorated significantly. It turned out that the symptom wasn't a side effect and the med was restored, as was her previous state. This showed that at that stage Memantine was having a very good effect.

I have to agree that it's up to the GP to agree any meds in line with medical history.
 

Jules1969

New member
Jul 23, 2021
4
0
Hi @Jules1969,
there is no medication to slow down the vascular part of the dementia, but his vascular risk should be managed - i.e. medication for cholesterol and blood pressure if needed and regular monitoring of his blood sugars. Some doctors will prescribe for the alzheimers part but these are usually started and initially monitored in specialist units such as memory clinics or Old peoples mental health. If the diagnosis has been done by your GP without specialist assessment I personally would be asking for a referral as some drugs can only be started in secondary care.

If your GP is any good you will only have been sent information about medication that is acceptable with the medication your husband already takes. I would look at the main side effects and if there is nothing there that makes you immediately think he can't possibly take that that helps your decision making. Please phone and request an appointment to discuss his medication. Any medication has risks and benefits, this hopefully is just your GP's way of letting you know that so you can have an informed discussion before medication starts.
In my families case mum and I had this discussion face to face with an Advanced Nurse Practitioner in memory clinic and the first choice medication was ruled out immediately by mum due to the side effects and her other health conditions .
I hope this helps you decide what you need to do.
Hello @silkiest,

thank you for your reply. I have read through the leaflets that GP sent us and I would be worried about both as the side effects would not be good with either. I have made an appointment with the GP to discuss and I am hoping that they will be more helpful. It was the memory clinic GP who gave us the choice.
 

Jules1969

New member
Jul 23, 2021
4
0
Hello @silkiest,

thank you for your reply. I have read through the leaflets that GP sent us and I would be worried about both as the side effects would not be good with either. I have made an appointment with the GP to discuss and I am hoping that they will be more helpful. It was the memory clinic GP who gave us the choice.
 

silkiest

Registered User
Feb 9, 2017
365
0
Hi @Jules1969 , the memory clinic doctor is a specialist, not a GP. Unfortunately your own GP will not be able to prescribe either of the medications until the specialist has stabilised your husband on one or the other. GP's in general practice are not allowed to prescribe many medications including these dementia ones until a specialist clinic has authorised it. I suspect the information leaflets are to save some time at your next memory clinic appointment.