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Memory clinic process question

Bearz77

Registered User
Jan 18, 2020
20
My mum has an appointment at the memory clinic on Wednesday. However I think the process may be out of sync as she had a fall before Christmas and a dementia nurse referred her to the MC having down a few tests with her. She had a CT scan post fall which showed a small reduction in the size of the brain but nothing conclusive. Previously my mum refused memory tests as she refused to believe there was a problem. The only positive from her fall was that she was more confused so we finally managed to get her seen while in the hospital.
my question is really what will happen at the clinic since the other tests have already been done?
Will she do more tests and then a diagnosis given there and then?
My dad says he wants to go with her but I fear he may put a positive spin on things to try to make my mum feel better. I feel I should go too, but expect she will take it out on both of us should a diagnosis be given there and then. As she is less confused than in the hospital it means she’s more aware of things I think.
Thank you for any advice you can give me.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,636
Kent
Hello @Bearz77

If possible I think it best if both you and your dad accompany your mother. It is important you hear the diagnosis first hand no matter how your mother reacts.

I can`t tell you what will happen. Different clinics have different procedures.

When my husband was disgnosed we were given a prescription for medication and told to make an appointment after six months.
 

Bearz77

Registered User
Jan 18, 2020
20
Thank you for your reply. Can I ask if the clinic were sensitive towards you and your husband or was it all very clinical? I expect all clinics and staff behave differently but it would be good to get a sense of what could be expected. I expect my dad will find it extremely difficult so want to be there for him and prepare him as much as possible as well as for my mum.
 

Wildflowerlady

Registered User
Sep 30, 2019
109
Hi @Bearz77

My dad was referred by his GP to the Memory Clinic after sister and I managed to persuade him he needed his GP to do a general annual check up to check his current medications :) it was the only way we could get him there. If we had mentioned dementia he would have refused to go.
Prior to all this dad had been admitted to hospital due to being found in the bath by sister on a visit to see him, no water in bath just a very naked and delirious dad. I arrived a few minutes after sister as some days we would meet up at dads together. Dad had a UTI and kidney function was very poor he spent several days in hospital ended up with a permanent catheter and re-ablement service which ended up with permanent carer visits. Dementia and investigation for it came after all this.
We were getting very concerned about his memory and behavior which had been odd and even my mum had been making comments such as he doesn't know what he's doing etc not long before she died.
Mum almost 82 years didn't have dementia was as bright as a button but sadly died of liver cancer due to her Diabetes and long term medications, my mum never drank so definitely not alcohol related.
We had a reasonable expectation that dad was going to be diagnosed with dementia.
A dementia nurse came out to his home and did some tests to see what dad could do clock face a bit of drawing some little arithmetic and remembering address etc both my sister and I were with dad as we were supporting dad as much as we could since our mum had passed in August 2016.
Dad had a scan blood tests etc at the hospital too which was arranged after her first visit.
Dad then received an appointment to go to the Memory Clinic to discuss the results.
My sister and I took dad to the appointment.
The specialist explained to dad and us that he had Mixed Dementia ( Alzheimer and Vascular ) explained a little bit about the results of the scan.
Dad didn't take any of it in but specialist said for him not to worry and said Dementia was just a word given to his condition and dad didn't seem alarmed by what was being said.
There was a bit of nodding and eye indications from myself and sister when explaining some of the things we had noticed the specialist was upfront but nevertheless very kind. We were given a fairly thick book which he underlined a few bits in but dad has never read sister and I read and swapped between us.

With the internet now all the general information is available anyway but the forum is brilliant as we all try and help each other by offering supporting and understanding as our PWD goes through different stages.

The specialist did ask if dad would like to try some medication but he was more or less directing the question towards my sister and I we both said yes. It was the GP that prescribed the medication after receiving the specialists letter detailing dads visit.
Following that appointment the same dementia nurse came back to the house to see how dad was getting along on the medication which was initially started at 5mg ( Donepezil ).
The medication was increased following another visit to 10mg the maximum dose and then finally a third visit from her at which point she discharged dad from the clinic altogether. I think the gap between her visits were around 2-3 weeks.
Dad was officially diagnosed early 2018 he is still living at home with 4 care visits per day plus sister and I give quite a lot of our time too. The dementia has progressed and he is now doubly incontinent and prone to having some outbursts of verbal aggression I don't know how much longer he will be able to live on his own but suspect it won't be more than a few months.
I hope I have been of some help the forum is still quite new to me but joining has given me so much support.
Have added as I almost forgot the specialist did briefly discuss with dad and sister and I about dad doing a Lasting Power Of Attorney. Dad doesn't own any property but it has still made things easier as now he doesn't go out much so I do all his shopping using a POA card and keep all receipts my sister doesn't drive so its easier for me to do.
We obviously had the LPA done after his official diagnosis the specialist said dad still had understanding of what it meant. Mostly people will advise that its best to get one set up ASAP ideally before diagnosis if possible.
As long as there is still some understanding of the meaning of the document it will still be able to be done even if the PWD can't remember later on its the moment they sign and understand what they are doing in that moment that is important. It will be a very valuable document as dementia progresses.
 
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Vitesse

Registered User
Oct 26, 2016
165
Thank you for your reply. Can I ask if the clinic were sensitive towards you and your husband or was it all very clinical? I expect all clinics and staff behave differently but it would be good to get a sense of what could be expected. I expect my dad will find it extremely difficult so want to be there for him and prepare him as much as possible as well as for my mum.
I’m sure Memory Clinics will be slightly different in the various areas, but don’t worry about it. Back in 2015/16 my husband had spoken to the GP about his failing memory, but we were going away on a long holiday and the GP said he would refer him to the Memory Clinic when we returned. To be honest, not having any idea about the MC, we put it off. I honestly thought it would be a group thing with everyone in various stages of dementia. (No idea why I thought that!!!)
In the end, we agreed to him going and the GP also organised a scan while we were waiting for the appointment. The memory clinic was just a visit to a different GP locally who was trained in dementia and had a similarly trained nurse. The nurse took my husband to do tests, and then we both saw the doctor who explained that he had AD, and prescribed Aricept. We had a couple of follow up appointments, but the Aricept wasn’t suitable, so they changed it to Rivastigmine. I think we went to see him 3 times in all, and then he referred us back to our GP. The nurse also gave us info, and said she would organise us to meet someone from the Alzheimer’s Society. Being impatient, I called the Alzheimer’s Society myself, and one of their ladies came to visit us and was marvellous. She was so helpful.
So please don’t worry about the Memory Clinic, it is the best way to start to get the proper help needed for this awful situation
 

Lawson58

Registered User
Aug 1, 2014
2,060
Victoria, Australia
I think every memory clinic functions differently.

I went with my husband for his appointment after being referred by his consultant. My husband went off with a neuropsychologist for in depth and exhaustive testing while I spent an hour with an occupational therapist talking about all the things I had noticed were going on with my husband. The staff deal with elderly and frail people all the time and we were treated with respect and kindness.

So it would be a good idea to write down all the things that you have noticed going on and note examples of each. Take it with you to the appointment but be prepared that testing will probably exclude you.

My husband was worn out after the testing. The consultant gave us the results a few weeks later.
 

imthedaughter

Registered User
Apr 3, 2019
188
Just to note that if your mum goes alone she may well not recall any of the information given so it's vital that someone goes with them. The systems are not set up to let multiple stakeholders know what is going on: I found out in January that my dad was diagnosed in November because the consultant who saw him wrote to his GP, not to me or anyone else. Dad wasn't on his own but I think the person with him didn't realise we didn't already have a diagnosis.
 

Firecatcher

Registered User
Jan 6, 2020
21
My Mum was referred clinic 12 months ago. She was seen at home by a nurse who asked general questions and carried out an Addenbrooke’s Cognitive Assessment - ACE-111. You can find information about this online. This was followed by blood tests, a CT scan and a home assessment by an Occupational Therapist. This dragged on over several months with me having to do a lot of chasing up. Mum was finally seen by the consultant in May last year who diagnosed Mild Cognitive Impairment and discharged her back to her GP. The GP referred her back to the clinic last December and she was visited by the same nurse who did another ACE-111 which indicated a lower score. He said he would need to speak to the consultant and Mum and Dad didn’t hear anymore until the nurse phoned them mid January. He told Dad over the phone that Mum had Alzheimer’s and then left Dad to break the bad news. He said they would be starting Mum on Aricept but so far this hasn’t happened. I’m absolutely appalled about how the diagnosis was conveyed to my parents and have made a formal complaint.
 

Bearz77

Registered User
Jan 18, 2020
20
Thank you very much for your helpful and supportive responses, though I am very sorry to hear about the bad experience. It’s hard enough dealing with the effects of dementia without having to fight the system.
Unfortunately Mum is being discharged from the temporary care home tomorrow. We were hoping she could go to the appointment on Wednesday from the care home as there’s more chance of her refusing to go from being at home. Fingers crossed we actually get her there. We know it’s necessary to try and get some help, even if it’s not much.
 

annielou

Registered User
Sep 27, 2019
678
Yorkshire
We took mum to gps intitally, she didn't want to go but somehow eventually she did go with us, she told gp there was nothing wrong with her apart from normal aging and loneliness and she better ask me cos I was one who thought something wrong. Gp asked mum a few quick questions and she then asked if could ask me a few questions about why I thought mum was having problems which mum grudgingly agreed to. I told her a little about reasons I thought mum had problems while mum glared at me which was uncomfortable but I felt necessary.
Gp then referred mum for blood tests and on to memory clinic for further tests telling mum she was inclined to agree with me there was a bit of a problem and it was best to find out why and start on it early and if they did tests and showed nothing wrong then mum could prove us wrong.
We had a nurse come out to mums initially and I was there too, she talked to me and mum about things she had problems with and if she could do things and a bit about mums life, after mum answered she asked me if what mum said was correct. Quite a lot wasn't.
Then she gave me a questionaire to fill in in another room while she did memory test with mum. She was lovely with mum, really calm and told mum there was no wrong answer and she'd done a good job when mum was worried she'd made a mess of it. My questionaire asked things like if mum had problems with doing things, remembering things,mobility, using technology, preparing meals, getting ready and also a few about how I felt. She arranged an OT to come out to assess mum round house too.
Then mum had a ct scan at hospital and after that we went to see a dr at memory clinic who went through test results and asked a few more questions of mum and me and told us mum had alzheimers and they could start mum on tablets which mum agreed to try. She was very calm with mum and she also asked mum if it was ok to ask us questions too which luckily mum said it was ok. It is awkward at times discussing what is happening and what they struggle with and do in front of them as some of it they dont remember and often they dont want you to tell people about it. Some others on forum have wrote or printed a list of examples of problems their loved one is having and concerns they have before hand and either sent in beforehand or taken it with them and given to dr/nurse so don't have to say it in front of them.
When dr had finished she said she would send us a copy of the meeting with diagnosis and a nurse would be in touch about tablets. She gave us a folder with some leaflets in too.
The copy came in post a few days later and then memory nurse came out to explain it to mum and bring perscription for tablets. She has had a couple of follow up phone calls and visits since.
If she hasn't already had the memory test she will probably be given that on this visit and maybe come back for diagnosis after a dr gone through all information or maybe they will give it while she is there. You could probably give them a ring and ask if it is for tests or diagnosis as you want to know when to attend with her.
I hope you manage to get your mum there, maybe say she has to go as a follow up after coming out of home or after fall. Good luck x
 

Bearz77

Registered User
Jan 18, 2020
20
Annielou, thanks for the time you took to reply. It sounds like you had some sensitive doctors and nurses in your experience which is heartening. Thank you for giving me something positive to think about before we go. X
 

Mousehill

Registered User
Nov 28, 2018
55
This is all really helpful. My mum was referred to Memory Clinic on 21st Jan and we're still waiting for the appointment to come through. I've written out a summary of what I want them to know, so if all else fails, I can just hand it over!

A question about brain scans: I'm assuming the MC refers the patient to a hospital? How long does it take for the scan appointment to come through and would I be allowed to come with mum right up to the time she goes into the scan room? I had a MRI recently and despite the warnings about the freaky noises, I don't think anything prepares you for the buzzing and the clanking once you're in the tube :eek: What exactly happens in a brain scan?
 

Sirena

Registered User
Feb 27, 2018
2,130
A question about brain scans: I'm assuming the MC refers the patient to a hospital? How long does it take for the scan appointment to come through and would I be allowed to come with mum right up to the time she goes into the scan room? I had a MRI recently and despite the warnings about the freaky noises, I don't think anything prepares you for the buzzing and the clanking once you're in the tube :eek: What exactly happens in a brain scan?
Yes, the memory clinic refers the person to their nearest hospital for an MRI scan. I am sure it varies greatly how long you have to wait. There was a bit of a lull because the memory clinic didn't request the scan, but when they finally got around to it we got an appointment in under a fortnight.

My mother's carer accompanied her to the MRI appointment - I thought she would be reluctant/scared but it all went fine. Having had a brain CT scan myself, my OH was with me until I actually went through the door so I assume the same with MRI.
 

annielou

Registered User
Sep 27, 2019
678
Yorkshire
This is all really helpful. My mum was referred to Memory Clinic on 21st Jan and we're still waiting for the appointment to come through. I've written out a summary of what I want them to know, so if all else fails, I can just hand it over!

A question about brain scans: I'm assuming the MC refers the patient to a hospital? How long does it take for the scan appointment to come through and would I be allowed to come with mum right up to the time she goes into the scan room? I had a MRI recently and despite the warnings about the freaky noises, I don't think anything prepares you for the buzzing and the clanking once you're in the tube :eek: What exactly happens in a brain scan?
Mum had a CT scan which took less than half an hour. We sat with her in waiting area but werent allowed down corridor to scan area.
It was about a month from when memory clinic first sent someone out to see mum at home, then she had ct scan at hospital and then she had appointment at clinic for diagnosis .