Dementia diagnosis process ... and resistance to accept help

[gogo321]

This is my first post - although I have been lurking and reading other peoples' posts for a while now.

Our position is that shortly before Christmas 2016 Mum went for her first "test" at the memory clinic - in fact it was the day that Donald Trump had been elected, which made the "Who is the President of the USA" an entertaining question!

Shortly after Christmas, we went back to the memory clinic to "meet" with the consultant. The actuality of this "meeting" was a consultant who wafted into the room and announced to mum that she had "mixed dementia" and then wafted out again. She had all the empathy and compassion of a house brick!

So, we have been through all the rounds of different people from the memory clinic visiting mum for different reasons and a couple more rounds of the memory test.

Should we have been offered some kind of brain scan for mum to determine exactly what type of dementia she has? Is this what other people have had?

She has now started on Donepezil (for the last 6 weeks or so) and we are due back at the memory clinic this week for a medication review. How could this have been prescribed without them knowing what kind of dementia she has - or is it a bit of a "jack of all trades" drug when it comes to dementia?

Mum also suffers from depression (is on medication for this) and seems to have had a recurring UTI for the past year which her GP keeps prescribing rounds of Nitrofurantin for and also a daily one to help stop it recurring. This clearly isn't working as every time we do a dip test, it comes back as infected. Should the GP be a bit more pro-active with trying to resolve this?

When we visit the consultant, I am tempted to ask whether they should be looking at all these things as a whole and not just the dementia? My expectation is that we will be in the room for about 5 minutes where she will ask mum if the tablets are agreeing with her (i.e. no side effects) and will then probably increase the dose and send us on our way. The reality is that mum probably won't know what tablet the consultant is talking about!

Does anyone have any experience of this? Should we be asking for mum to be treated for dementia, depression and ongoing UTIs - as all these things make a huge difference to how she is within herself?

She is very depressed at the moment, as she is very well aware that her memory is awful. We are doing what we can to try and help her, but she sees it as interfering and doesn't think she needs any help!

Sorry for my rambly thread .. I have so much in my head I didn't know where to start so just tried to put the main points that I am wrestling with!

I would really like to be a bit more prepared this time when meeting the consultant - and I certainly won't put up with her wafting in and wafting out until all our questions are answered ...I just need to get my plan straight first!

Any thoughts, advice or suggestions would be much appreciated!

 

[Soobee]

Hello and welcome gogo321.

It's sad that you don't seem to have a compassionate consultant. I wonder if there is an alternative one you could ask to see?

Not everyone gets a scan before diagnosis, although you could certainly ask if your mum could have one. I don't think mine had a scan specifically for dementia, although she had a stroke or mini-stroke a year before diagnosis and she had some kind of scan then.

A lot of the diagnosis comes from the kind of symptoms present, as there is no way to confirm the type at the moment. Different kinds of dementia cause different issues. If it was purely vascular dementia they didn't use to give these kinds of drugs because they wouldn't help.

Regarding the constant UTIs, I've had these myself and was on treatment and then a maintenance dose of Nitrofurantoin for a couple of years. Every time I was tested I also showed up a bit of infection (at a level the GP always ignored) even though I wasn't having any symptoms at the time. In that regard, I am not sure what else they can do except try other antibiotics which can be even less effective.

I think other people will be able to advise you, but it sounds like you know what the issues you want to discuss are, and how much impact they have on your mum and her dementia, so see how the consultant addresses those concerns. It may well be that she says the depression and UTIs are a GPs remit rather than a memory clinic one.

 

[Kevinl]

Hi gogo, welcome to TP
The memory clinics deal with just that the memory side of things, not UTIs or any other medical conditions, the consultant may well be a psychiatric consultant and not a medical doctor as such so they just stick to their area of expertise.
It is possible that as is happening increasingly often from what I read on here that having got the medication sorted and stable that the clinic may discharge your mum back to the care of the GP and just ask you to get in touch if there's any changes.
My wife had both a CAT scan and a SPECT scan but she still ended up with a diagnosis of "mixed, atypical AZ" diagnosis when it comes to AZ is not an exact science.
Ultimately the type of AZ (in my view) isn't that important as we're all different and while some patterns of progression are more common in certain types of AZ there is no guarantee they she will or won't get them.
Sorry if that sounds a bit negative but other than medication (which usually means Donepezil) there's little else they can do and little help they can offer.
K

 

[Risa]

She has now started on Donepezil (for the last 6 weeks or so) and we are due back at the memory clinic this week for a medication review. How could this have been prescribed without them knowing what kind of dementia she has - or is it a bit of a "jack of all trades" drug when it comes to dementia?

Hi gogo and welcome

My Mum had a scan and was diagnosed with mixed dementia but as Mum's meds are prescribed to help with her behaviour (extreme anxiety, aggression) I don't think having the scan and knowing what type of dementia was that relevant when it came to prescribing meds. However if your Mum already suffers with depression, you are better discussing her meds with the psychiatrist rather than a GP and can make use of seeing an expert

 

[Moggymad]

Hi we recently had an appointment at the Elderly Medicine Clinic at our General Hospital. The consultant went through all the meds mum was on for her various illnesses ,eg Alzheimers, diabetes, uti at time of this appointment ( regular issue). She made recommendations to the GP regarding meds suggesting certain changes & involvement of district nurse for some other issues. The GP subsequently contacted me regarding these recommendations which we then discussed whether or not they would be practical to implement. Perhaps this is the sort of help you might be looking for? It was the hospital who referred mum for this appointment due to her many falls but perhaps the GP can also make referrals if you have such a clinic at your local General Hospital?

 

[Maggiemol]

Just to say my OH did not have a scan and was diagnosed with AD by the memory clinic. As has already been said I think the scan is not really required as they diagnose on behaviour and symptoms.
I do understand your frustration about not having a medical person to look at things in the round. As well as AD my husband has heart failure and rheumatoid arthritis and it seems that each consultant just prescribes in their own field. I envy Moggymad her specialist, I know we have geriatric specific consultants in our local hospital but not sure how you get a referral. Will check. Thank you

 

[Beate]

Mixed dementia is most commonly the combination of Alzheimer's and vascular dementia. Alzheimer's can be treated by Donepezil which is why your Mum is getting it:
https://www.alzheimers.org.uk/download/downloads/id/3379/what_is_alzheimers_disease.pdf

I'm afraid the Memory Clinic consultant will not be terribly interested in UTIs - they are a common problem for people with dementia but should be treated by her GP.

 

[gogo321]

The Elderly Medicine Clinic sounds just what we need ... thanks Moggymad! I will make enquiries to see if our local hospital has the same thing.
Our GP surgery recently sent a nurse to see mum for an "Over 75s Health Check". Not sure what she did, as the surgery didn't think to tell me or my sister they were going to visit mum and we haven't been able to get anyone at the surgery to contact us with an update of what happened .. and mum can't remember!

I feel slightly relieved to find out that scans aren't always par for the course - it just seemed odd that the consultant hadn't spent any time with mum and had just read some notes with the memory test results, etc on and come to her diagnosis. Perhaps it was her manner that has just got to me! Perhaps she has seen a thousand "mums" and doesn't need anything whizzy to assist her with her conclusions.

Thanks to everyone for their comments and advice so far - it's really helpful to read them.

 

[gogo321]

Mixed dementia is most commonly the combination of Alzheimer's and vascular dementia. Alzheimer's can be treated by Donepezil which is why your Mum is getting it:
what_is_alzheimers_disease.pdf

Thanks for the link to the pdf - it has lots of useful information and echos a lot of things my sister and I have been talking about but don't appear to have been offered to us - such as
"The person should have a chance to talk to a
professional about their diagnosis. This could be
a psychiatrist or mental health nurse, a clinical
psychologist, occupational therapist or GP."

I will ask about this at the medication review - as I think the one thing that would really help mum at this stage is someone to talk to about her diagnosis (someone who isn't related to her!!).

 

[Lawson58]

OH has a six monthly review with the geriatrician and I pretty much think it is waste of time but I stick with it because I have no idea of what is ahead of us and I like to keep my options open.

We have been going to our GP for many years and we rely on him completely to manage us both. He was a huge support in the years when we were trying to get a diagnosis for OH and I would trust his advice before anyone else's. If you can work towards developing your relationship with your GP, it could be very helpful. His practice conducts annual reviews of people 75 years + which I think is beneficial for those who might slip through the cracks.

Re the uti, has a culture been done for your mum to make sure she is on the right antibiotic?

 

[Agzy]

My partner has also been diagnosed with Alzheimer's Disease following memory tests. The consultant did have her scanned but only because she had fallen some months earlier and banged her head so scan was precaution. She not only has numerous UTi's but self catheterises three times a day which in turn causes more infections. She has been on Donepezil top dose for a year and it has really helped in her case. Now referred back to GP and is to have a review next month. Seems to be par for the course with AZ I'm afraid, good luck.

 

[gogo321]

My partner has also been diagnosed with Alzheimer's Disease following memory tests. The consultant did have her scanned but only because she had fallen some months earlier and banged her head so scan was precaution. She not only has numerous UTi's but self catheterises three times a day which in turn causes more infections. She has been on Donepezil top dose for a year and it has really helped in her case. Now referred back to GP and is to have a review next month. Seems to be par for the course with AZ I'm afraid, good luck.

Hi Agzy, if you don't mind me asking - what dose of Donepezil is your partner on? Mum is on 5mg I think but has only been taking it for the last 6 weeks. We haven't noticed any difference in her yet - but am not sure if 6 weeks is long enough for it to do its job! We have a medication review today and the nurses at the memory clinic have indicated that the dose will likely to be increased - however I have no idea what the minimum and maximum doses are! I am wondering if the current 5mg dose is very low and almost a tester to see if there are any adverse reactions, rather than a high enough dose to make any difference?

 

[jugglingmum]

As I understand it, the starting dose of Donepezil is 5mg - partly to see if there are any side effects (upset stomach/fainting seem to be the common ones). If it is OK then the dose is increased to 10mg.

The jury is out on whether there is improvement, although it is meant to slow down progress. In my mum's case it has definitely slowed things down, and when she started it, I did notice she became more 'settled' ie less anxious and maybe a slight improvement.

 

[gogo321]

As I understand it, the starting dose of Donepezil is 5mg - partly to see if there are any side effects (upset stomach/fainting seem to be the common ones). If it is OK then the dose is increased to 10mg.

The jury is out on whether there is improvement, although it is meant to slow down progress. In my mum's case it has definitely slowed things down, and when she started it, I did notice she became more 'settled' ie less anxious and maybe a slight improvement.

Hi there,
We have been for the review today and they have upped the dose from 5mg to 10mg. We all have our fingers and toes crossed. Poor mum - her short term memory is absolutely non-existent at the moment and whilst I know that Donepezil won't cure that, I just hope that it will have some positive effects.
She says that she feels permanently sedated - not able to function (this was before she started on Donezepil) and we think that her head is very foggy. I have read that some other people feel the same way and in some cases the Donepezil can help to "lift" the fog. I wish with every bone and breath in my body that this happens for mum - she is so frustrated, angry, depressed and fed up with her memory. She is so aware that it is bad - it just brings her down. She is and has been, very anxious and so perhaps we will see an improvement on that side too.
Fingers crossed.
Thanks!