1st memory clinic appointment

[Emsy]

Hi folks, I wonder if anyone is able to give me an idea of what happens at the 1st memory clinic appointment so I can be prepared.
Dad was referred by the hospital 3 months ago so they already have CT scan results & know he has Alzheimer's.
My concern is if they only ask him questions they will think he is perfectly fine apart from some memory issues & looking after himself very well as thats what he will tell them but this is really not the case. If they ask me & I tell the truth in front of him he will vehemently deny there is anything wrong & say that I'm lying.
I guess I should trust they know what they are doing but they don't know my dad and how cunningly he can wash over his symptoms.
Many thanks xx

 

[Il Gufo]

Memory clinic

Hi Emsy,
My mum's first assessment was done at her home, with me there too. A nurse chatted for a good while, and then told mum she would be asking several questions, and asking mum to solve puzzles etc. Mum was happy to go along with it all, and was treated with kindness and dignity by the nurse and her student.
We went for the follow-up appt with the consultant at the memory clinic following mum's CT scan and also ECG. We spent 50 minutes with him, again he was charming and kind, not once making us feel rushed at all. Mum's diagnosis was mild to moderate mixed dementia, and she has started on a drug called Ebixa. She is about to start week 3 of the pack, and knows that it is not a cure, but will hopefully slow down the progression of the illness.
As yet mum has not shown any signs of being aggressive or in denial, so difficult to answer your question - although I would imagine that the professionals see those traits all the while, and are well able to deal with them. Maybe I'm being naive as our experience was such a good one, but hope today's appt goes well for you and your dad. xx

 

[Forestridge]

Mum had her first appointment with the Memory Nurse at the clinic for a 90 minute appointment. She was given a couple of questionnaires, the MMSE and Addenbrookes Cognitive Examination, maybe more but those two I recognised. She was asked lots if questions about how she was feeling, her history - where worked etc. The Nurse would watch me out of the corner of her eye for a shake of my head if I felt that was wrong. There was also a questionnaire for me so I wrote extra things down on there.

We had the CT scan as the next stage then back to see the Consultant this time at the Memory Clinic. I wrote a letter before going so I didn't need to say things in front of Mum. He took us through the results of the scan, explaining what it all meant and gave us her Addenbrookes score. The diagnosis kind of emerged and I summed up at the end to make sure I was entirely clear. She has moderate mixed dementia and just started on Aricept.

 

[Emsy]

It's good to hear that the experience has been positive - I'm maybe being a worry wart!
The letter is a good idea - perhaps I could make a list of behaviour changes & for how long we've noticed the change in him to give to the consultant

 

[Forestridge]

Mum has been very good at hiding her symptoms until recently. If I raised concerns she would say in her most reasonable voice that she thought I was making much too much of things. She would sound totally rational, say things like I'm always keeping half an eye on the tennis when you ring me so am not fully concentrating.The beauty of a letter is you're not on the spot, can take your time getting it down, and if you stick it in the post then you don't need to worry trying to slip it to someone as you arrive.

The other thing I got used to saying was when she's fine with ordering her shopping online, I'd say, yes it's very handy having the computer, I noticed you haven't had a delivery recently. And she told everyone she decided to give up driving so I would add that I thought it was a very sensible decision, so it didn't matter when she found her car insurance hadn't been renewed when trying to tax her car. The original nurse read between the lines.

 

[SoyHJ]

Memory test

We too are waiting for an appt for a 'memory Test'. I don't know the name of it but have been told it will take 3 hours. I assumed that there would be no point in my going with my husband as he clearly will have to do this alone. (It will involve him travelling back to the UK from where we live) BUT, I gather from these posts that there is often an interview as well? Is this so because if it is not simply a question of husband attending, sitting down to take the test then 'goodbye', and I might have an opportunity to speak to someone, then I want to be there. So I am now wondering too, what happens?

 

[myangel]

Hi
At our Memory Clinic the first appointment is about 3 hours and a diagnosis is given if possible. Whilst they are doing the memory tests another nurse talks to the carers seperately to help them get a full picture. We had also had an mri scan before attending the clinic.

 

[dotfoxleics]

We too are waiting for an appt for a 'memory Test'. I don't know the name of it but have been told it will take 3 hours. I assumed that there would be no point in my going with my husband as he clearly will have to do this alone. (It will involve him travelling back to the UK from where we live) BUT, I gather from these posts that there is often an interview as well? Is this so because if it is not simply a question of husband attending, sitting down to take the test then 'goodbye', and I might have an opportunity to speak to someone, then I want to be there. So I am now wondering too, what happens?

In my mother's case her GP did 2 MMSE (Mini Mental State Examination) Tests before referring her to to the Psychiatrist who at the first appointment did another MMSE test and then an ACE (Addenbrooke's
Cognitive Examination) Test. The Psychiatrist reviewed the blood test results from the GP. The memory tests are only part of the process in reaching a preliminary diagnosis which will require an MRI scan as the preferred diagnostic test or a CT scan - the cheaper alternative. I think you or someone you can trust needs to be there to take a note of proceedings.

 

[Poppy79]

Hi Emsy. I've also got a 1st appointment at the Memory Clinic coming up, for my Mum. They sent Mum pack in the post, with a questionnaire for her to fill in and a 'Behaviour Inventory' for me to fill in (luckily she was away and I was house-sitting with instructions to open her mail because if I hadn't been she would never have given me the behaviour inventory or told me of its existence!). The letter says that the consultant neurologist will talk to me on my own for 10 minutes whilst Mum is with a nurse taking a short cognitive test. I'm really glad because there's stuff I wouldn't want to say infront of her, and because she's so convinced that she doesn't have a problem her conviction is quite convincing.
I've filled out the behaviour inventory, and at the bottom there's a small space to write comments. Well, I started writing and couldn't stop.... literally, seven pages of stuff about her behaviour over the six years since her memory loss first manifested. They're gonna love me when I hand them a wodge of paper!

 

[SoyHJ]

So I should be there?

So it sounds as if it won't just be a question of waiting for him in a waiting room while he takes 3 hours over tests. I thought it would be just that, an MRI and then the follow up visit to the neurologist was when we would be given results? I know this must sound ignorant but, like Emsy, we are new to all this.
I should have added to clarify that he has already seen a neurologist who referred him for the MRI and memory test and wants to see him again in 3 months by which time the tests will have been done.
Emsy, I'm sorry if I seem to be hijacking your thread but it feels like we both have the same questions!

 

[cragmaid]

Hi, all the above seem to have eperienced similar Clinics to my Mum. What I did ( and still do) is to write down anything and everything that Mum does( or did,) that has been affected by her illness. I hand this to the Nurse as soon as we check in and it gets read by the Consultant and noted. I also, while attending every appointment with Mum, make a point of sitting out of her eyeline so that I can nod or shake my head when necessary. Sometimes you can say things like, "wasn't it strange when x happened Mum, remember?)and demonstrate her memory or lack of events that way. The staff are usually very quick to pick up signals, and Mum's consultant even said to me once, that Mum was obviously a very intelligent woman and a fine actress, given the number of times she thought of an excuse and tried to present it in a believable fashion!

 

[dotfoxleics]

Very good tip to sit to the side and back a bit out of eyeline so that you can shake you head etc to communicate with the specialist.

 

[LAP]

memory clinic

Hi folks, I wonder if anyone is able to give me an idea of what happens at the 1st memory clinic appointment so I can be prepared.
Dad was referred by the hospital 3 months ago so they already have CT scan results & know he has Alzheimer's.
My concern is if they only ask him questions they will think he is perfectly fine apart from some memory issues & looking after himself very well as thats what he will tell them but this is really not the case. If they ask me & I tell the truth in front of him he will vehemently deny there is anything wrong & say that I'm lying.
I guess I should trust they know what they are doing but they don't know my dad and how cunningly he can wash over his symptoms.
anks xx

My Husband had tests prior to the consultants appointment. These were completed in our own home over a period of weeks and then 12 months later these tests were repeated to see how much/if any he had deteriorated. [he had!] Our appointment with the consultant took at least 45 minutes - not rushed at all and he was lovely with my husband. [He did keep looking at me out of the corner of his eye to see if I agreed or disagreed with what my husband was saying.] My husband was then informed that he had alzheimers -early stages, which stunned my husband because he feels that it is only his memory that he has a problem with!! Does your father drive? My hubby does and does not want to give it up so we are in the hands of the DVLA.
He blames me for writing to them and cannot seem to retain the knowledge that legally we had to inform them as did the consultant. I am lucky in that our daughter and son in law are police officers so they have both explained the situation to him.
I have lasting power of attorney for finaces and property [for both of us] and have just completed the documentation for lasting power of attorney for health and welfare for only hubby. I needed to do this now in case my hubby deteriorates to the extent that he cannot understand and therefore is unable to sign legal documents. The term used was "lacking in capacity" for any future deterioration. I also found it cheaper to go with the Will Writing co rather then the solicitor. My neighbour has just paid nearly £500 more than I have done for the same documentation, so if getting legal docs completed it is worth asking around. He was offered Aricept tablets at his consultation and has accepted them -5mg to start with for the first month and then increased to 10mg -he has been on them for 3 months alltogether and he seems to be ok with them.
Do not be afraid to ask questions-even in front of your father.
Hope all goes well with the appointment

 

[dotfoxleics]

My Husband had tests prior to the consultants appointment. These were completed in our own home over a period of weeks and then 12 months later these tests were repeated to see how much/if any he had deteriorated. [he had!] Our appointment with the consultant took at least 45 minutes - not rushed at all and he was lovely with my husband. [He did keep looking at me out of the corner of his eye to see if I agreed or disagreed with what my husband was saying.] My husband was then informed that he had alzheimers -early stages, which stunned my husband because he feels that it is only his memory that he has a problem with!! Does your father drive? My hubby does and does not want to give it up so we are in the hands of the DVLA.
He blames me for writing to them and cannot seem to retain the knowledge that legally we had to inform them as did the consultant. I am lucky in that our daughter and son in law are police officers so they have both explained the situation to him.
I have lasting power of attorney for finaces and property [for both of us] and have just completed the documentation for lasting power of attorney for health and welfare for only hubby. I needed to do this now in case my hubby deteriorates to the extent that he cannot understand and therefore is unable to sign legal documents. The term used was "lacking in capacity" for any future deterioration. I also found it cheaper to go with the Will Writing co rather then the solicitor. My neighbour has just paid nearly £500 more than I have done for the same documentation, so if getting legal docs completed it is worth asking around. He was offered Aricept tablets at his consultation and has accepted them -5mg to start with for the first month and then increased to 10mg -he has been on them for 3 months alltogether and he seems to be ok with them.
Do not be afraid to ask questions-even in front of your father.
Hope all goes well with the appointment

Interested to note that your husband had a diagnosis of AD without a brain scan (MRI or CT) which I thought was standard practice.

 

[turmoil]

Hi All

SoyHJ yes I would advise to go, my Dad had the scans and then we went to the memory clinic, we were there about 45 mins. The specialist asked my Dad a few things and then asked me some questions about if Dad saw things that were not there ect, this was difficult infront of Dad but then two nurses took Dad in one room where he answered a lot of questions, I was taken to a different room and spoke about how Dad was really doing also how I managed ect, the results from what I had said and the results from Dads test went back to the specialist and we were called back in and a diagnosis was made.

Hope this helps

Turmoil x

 

[Emsy]

Thanks to everyone that has taken the time to respond or added further questions that I hadn't thought of.
All really useful information & a great help in knowing what to prepare in advance.

 

[Wirralson]

Memory clinic

Interested to note that your husband had a diagnosis of AD without a brain scan (MRI or CT) which I thought was standard practice.

Not in my mother's case. She was diagnosed on the basis of MMSE and one or two other tests.

Wirralson

 

[Wirralson]

Memory clinic

Interested to note that your husband had a diagnosis of AD without a brain scan (MRI or CT) which I thought was standard practice.

Not in my mother's case, if my father is to be believed. She was diagnosed on the basis of MMSE and other similar tests.

Wirralson

 

[SoyHJ]

Hi All

SoyHJ yes I would advise to go, my Dad had the scans and then we went to the memory clinic, we were there about 45 mins. The specialist asked my Dad a few things and then asked me some questions about if Dad saw things that were not there ect, this was difficult infront of Dad but then two nurses took Dad in one room where he answered a lot of questions, I was taken to a different room and spoke about how Dad was really doing also how I managed ect, the results from what I had said and the results from Dads test went back to the specialist and we were called back in and a diagnosis was made.

Hope this helps

Turmoil x

Everything I've read here is very helpful. Turmoil, I have now decided to go with him, the next step will be to tactfully
explain to him why I've decided to come! Thank you. Xx

 

[dotfoxleics]

Not in my mother's case, if my father is to be believed. She was diagnosed on the basis of MMSE and other similar tests.

Wirralson

Page 10 of the NICE Clinical Guidelines CG42

www.nice.org.uk/nicemedia/pdf/CG042NICEGuideline.pdf

state that

"Structural imaging should be used in the assessment of people with suspected dementia to exclude other cerebral pathologies and to help establish the subtype diagnosis. Magnetic resonance imaging (MRI) is the preferred modality to assist with early diagnosis and detect subcortical vascular changes, although computed tomography (CT) scanning could be used. Specialist advice should be taken when interpreting scans in people with learning disabilities."

Sorry if I have a bee in my bonnet about diagnosis but my Mum has recently been diagnosed on the basis of a CT scan and I find the lack of consistency rather puzzling.

My mother's symptoms were consistent with either Vascular Dementia (VaD) or/and Alzheimer's Disease (AD) but on the evidence of the CT scan VaD without AD was diagnosed. I am arranging for an MRI scan to be done privately.