has my Dad been unnecessarily refered to the assessment team

[blueofsea]

Hello there, so my Dad's GP recently voiced concerns that he may have Dementia and referred him to the assessment team, yet when they called to make appointment, he refused to cooperate and he now denies that anything is wrong. We are unsure how likely it is that he has dementia due to his memory being quite good, but he does show other symptoms. So I have 2 main questions, how prominent is lack of memory in Dementia and can it manifest itself in more subtle ways? And 2nd how much do we encourage/push him to go meet the assessment team?

Here is a bit more back story, so For over a year he has been struggling to keep calm and deal with everyday tasks. There doesn't seem to be much wrong with his memory that we can tell, he seems capable of remembering what he has done in a day or what he did years ago, though he can be hesitant in his recollections, we feel this could be down to anxiety especially as he generally get there in the end. So how prominent is lack of memory in Dementia and can it manifest itself in more subtle ways?

There are other symptoms that seem to relate to my Dad, such as bad language skills i.e. struggling to find words, difficulty making decisions, struggling to complete simple tasks, being more emotional. These could just be signs of post traumatic stress along with layers of depression. So bottom line is how much is it worth getting him to meet the assessment team without upsetting him too much and unnecessarily.

Thank you in advance for your time

 

[Beate]

There is not just one version of dementia, as I am sure you know. There are many versions and sub-versions with different symptoms.

Lack of insight into the condition, behavioural and language problems could all point towards a rarer form called fronto-temporal dementia (FTD). But I can't make a diagnosis from afar - you need to get him to a specialist to further investigate. If he point blank refuses to go to a Memory Clinic and you can't get him there under a pretence, try to arrange a home visit and write down all his symptoms for the consultant beforehand to give them the full picture, because your father will deny them and there is nothing you will be able to do to convince him otherwise.

https://www.alzheimers.org.uk/downl...factsheet_what_is_frontotemporal_dementia.pdf

 

[Tin]

Don't know if my answer will help you. This is my experience with my mother - it was not her memory that caused any concern at the beginning. It was her bouts of anxiety, confusion and being unable to prepare food for herself-just sandwiches, toast and tea all day long. Her memory was ok she could remember conversations and events although there were gaps and a few made up things to fill these gaps. For us, she was probably 2 years into Dementia and my family noticing a lot more self neglect before we decided to seek a diagnosis, by this time she was quite happy to go along with all medical appointments because she believed there was nothing wrong with her and tests would prove her right. At same time we as a family decided she could no longer live alone.

One of the many things I have learnt about dementia is that initially it is not just about memory, it is far more complicated than that.

I am not sure what you mean by an assessment team - this is a term I only know that is linked with the local authorities. Memory clinic is the usual path and appointments from here are always arranged/notified by a letter.

 

[Kevinl]

Hi blueofthesea, welcome to TP
Some of what you say does sound like he may have the early signs and there are medications which may help slow down the speed of decline so I'd get him to see the assessment team ASAP.
Whilst there is no cure there are medications that may well mean he can lead an independent and better quality of life for longer so I'd get him on them if possible.
The G in GP is just that a General not a specific expert in any one area, but they know how to spot the signs and refer it to the experts.
The other thing you may need to consider is that it's not AZ at all, it could be something as simple as: a vitamin or mineral deficiency, a thyroid issue all the way through to a brain tumour. All of these need to be looked for and eliminated before AZ is the only option left to explore.
The memory team will almost certainly refer him to the hospital for a scan, either a CAT or SPECT scan (usually) to eliminate some possible diagnosis, likewise they'll do blood tests to eliminate other things.
Burying heads in the sand isn't an option, if he had a bad cough and the doctor referred him for a lung cancer check would you dismiss the doctor's concerns as easily?
It could be AZ, it could be any number of things some of which, caught early enough may be treatable.
I lost a friend who wouldn't see the doctor about his failing memory until it was too late, his fear of being told he had AZ meant that he later on got told that if they'd found the brain tumour he had 6 months earlier they could have done something, less than six months later he died.
If the GP referred him to a neurological consultant or a brain doctor maybe that would be more acceptable than the term "memory clinic" but that's who you see there, a brain doctor, an NHS consultant who'll try and figure out what the issue is.
Your thread is titled "has my Dad been unnecessarily refered to the assessment team"
Sadly there is no such thing as an unnecessarily referral but there is an unnecessarily delay in finding out what the issue really is, and that can come with a price.
Sorry if I sound a bit ranty, but time may not be on your side.
K

 

[oilovlam]

Presumably the GP has done a test to make him think of dementia. Usually it's a series of questions & tasks....who's the prime minister....where do you live....remember 3 things....draw a clock face etc.

There are probably other things you have noticed that seem like 'odd' behaviour. Can they feed themselves & make a drink? (You will have noticed weight loss if they are struggling). Have a look at their feet....my dad's feet were in a terrible state (mostly because we assumed he was taking care of them).

Certain types of dementia have drugs that can slow down the progression of the illness, so it is worthwhile to get a diagnosis.

Good luck.

 

[Lawson58]

Welcome to TP and I hope that you might find a few ideas to help you out.

Firstly, just to add to what others have said, there are many different types of dementia and even an experienced consultant may not be able to give you a definite diagnosis.
However, I believe that a diagnosis would enable you to get some practical assistance in caring for your dad and there maybe some financial advantages.

If your dad's GP has some concerns and anxious to get some assessment under way, then you already have an ally and he could be your biggest asset in getting help for your dad. Our GP and I worked for a year together to get OH to getting an assessment and he has been a wonderful support.

OH was diagnosed three years ago with 'atypical' Alzheimers which now I think means that the geriatrician doesn't really know which sort of dementia he has. Our GP thinks he has mixed dementia and the consultant has referred him for further assessment at the memory clinic which I think confirms my suspicions.

OH has memory problems but they are worse in the long term than short. He cannot remember anything of his childhood home though he lived there for twenty-two years, he has travelled a lot and knows which countries he has visited but can't remember when and nothing of what he has seen or done there.

He has some language problems, gets confused easily, has poor problem solving skills, can't use a mobile or drive, gets muddled with things like bank statements. But he can still play bridge and does so several times a week.

The biggest issue I have is his paranoia which can be quite stressful but his medication has been helpful and generally keeps him calm most of the time. He is in denial about his condition and can get quite anxious at times about his future.

Your dad might have some type of dementia but it could well be something else which might be treatable so I think you need to start working towards a diagnosis.

 

[canary]

My OH has FTD and certainly some of the things described sound familiar. He too has no trouble with his short term memory ( but has problems with long-term memory).
I would go to the memory clinic because it is so much easier to get help when there is a diagnosis - even if its a very vague one of dementia, without specifying which type.

BTW - atypical Alzheimers is actually quite a specific diagnosis. Although it is often used as a "catch all" diagnosis, it actually means Alzheimers that starts in the frontal lobes rather than the usual temporal lobes. The name has recently been changed to Frontal Lobe Variant Alzheimers and has symptoms very similar to FTD. Lawson - your dad certainly sounds like he has frontal lobe issues, but whether this is due to Alzheimers, Vas Dem, or FTD is not always easy to decide.

 

[Soobee]

It's definitely worth getting him to the assessment team.

My mum (who had vascular dementia) didn't show memory problems for a couple of years so we assumed other things were causing her problems. Work were trying to get rid of her on capability grounds and she had MMSE (memory tests) which she scored 29/30 on.

Her main problem was sequencing rather than memory loss for two or three years. That is, working out how to do tasks in the right order and remembering the steps to carry out the task. For example: making a cup of tea has several steps; making the dinner has many more.

She had trouble finding the right words (although myself and my daughter do, too) and for some reason Eddie Izzard became Izzy oggoth! The word-finding difficulty showed up years before other symptoms.

She had a couple of minor accidents in the car, shunting in the back of someone at traffic lights. She told us that when she was driving, she found that she'd gone automatically to a venue she visited regularly, like bingo, when she was trying to go elsewhere! Looking back it's quite bad and I feel bad that I didn't notice.

Then she rang to say she couldn't get the telly to work when she wanted to watch the Grand National, and my brother went round and found she'd just pressed the AV button but couldn't remember how to get it back to TV. Three months after that (and other things) she was diagnosed.

 

[Lawson58]

My OH has FTD and certainly some of the things described sound familiar. He too has no trouble with his short term memory ( but has problems with long-term memory).
I would go to the memory clinic because it is so much easier to get help when there is a diagnosis - even if its a very vague one of dementia, without specifying which type.

BTW - atypical Alzheimers is actually quite a specific diagnosis. Although it is often used as a "catch all" diagnosis, it actually means Alzheimers that starts in the frontal lobes rather than the usual temporal lobes. The name has recently been changed to Frontal Lobe Variant Alzheimers and has symptoms very similar to FTD. Lawson - your dad certainly sounds like he has frontal lobe issues, but whether this is due to Alzheimers, Vas Dem, or FTD is not always easy to decide.

Thanks canary. We have just had a six month review and the geriatrician is still being quite vague about the diagnosis. At the time of the original diagnosis, the neuropsychologist phoned me and asked a heap more questions and some of what she said suggests to me that she wasn't sure either.

 

[canary]

Thanks canary. We have just had a six month review and the geriatrician is still being quite vague about the diagnosis. At the time of the original diagnosis, the neuropsychologist phoned me and asked a heap more questions and some of what she said suggests to me that she wasn't sure either.

Sounds like was used as a "catch all" diagnosis then.
I only know about atypical Alzheimers as it was one of the diagnoses that was considered for OH and was specifically ruled out.

 

[Henry Ford]

My sister had an atypical presentation that was suggested to be several different things before they began to discuss a possible cognitive problem and eventually vascular dementia. It started with 3 faints over about a year which were investigated and diagnosed as low blood pressure and her medication was changed (I now wonder if they were TIAs) . Then she began to struugle to find an odd word- which went on for about a year and frustrated her but she knew what she meant and would describe it instead. No one, apart from my nephew and I thought that was unusual, it was just dismissed as common in older people. Then thete would be slight confusions with things like money -but nothing that was continual. She would appear normal a lot of the time. I noticed learning new things was harder for her. However she used her mobile phone and lap top every day with no problem and dealt with all of her post, bills, bank account, wrote stories which were published. We had occasions where she used strange words instead of a usual word - for example referred to me as 'that gentleman' on the phone to my nephew 'that gentleman was here today and we went into town shopping and had lunch at John Lewis'. The next day she knew my name and seemed unaware she had not known it the previous day. She said at the GP surgery when she was asked to provide a urine sample -as if it was a usual expression 'Where's the basin to pee in?'
Then she had a whole series of urine infections which caused confusion and the Drs put everything down to that. Her speech issue got worse and they still put it down to that. Part of the problem was she would improve for periods and be very lucid.
She never suffered paranoia or delusions and even weeks before she was eventually diagnosed she was out shopping every day, going to a craft group and church, having very rational clear days.
What I learned afterwards was it can present differently in individuals, it can worsen and improve, can be intermittent, can have slow progress or fast. There is no one pattern.