Oh, woe - Dad told he hasn't got dementia

[Corygal]

You'd think we'd be pleased, wouldn't you? But we're all horrified and worried by the latest from the memory clinic, who told Dad they were discharging him.

Dad can't find his way to the local tube station 5 min from the house he has lived in for 40 years - but he scored 99 per cent on the memory test. His brain scan revealed 'age-related changes' but none enough to guarantee treatment for a man who tells the same story again and again and again in the same afternoon.

My mum, who is loyal to a fault and has stoutly defended Dad's competence for years, is really upset - she's having to look after him, now with no help. What can we do? Can one get a second opinion on the NHS?

Reposting here thanks to suggestions in Chat. The only extra that might be pertinent is that Dad drinks at least 10 units a day - could this be causing the daytime (and evening) loopiness?

..didn't want your post go without any reply... can't help you much as my Mum has been Non compos mentis for around 7 or 8 years and is now bed bound.... but I know what you are going through before we had our diagnosis...

..have you looked at the Age Concern website

www.ageuk.org.uk

They are normally a good source of information - failing that there is the Moneysaving forum - which is good for getting fast swift responses to questions/problems:-

forums.moneysavingexpert.com/forumdisplay.php?f=26

Does your Father have a Social Worker - it maybe useful to contact Social Services for your area and point out that your Mother is struggling to care for him ...

Good Luck..

OP I feel your pain. Exactly the same thing happened with my Dad at memory clinic appointments. He performed so well in tests, yet cannot remember what we speak about from one minute to another. He is teetotal. Yet if a stranger asked him for his credit card and PIN he would happily hand it over! The tests just don't seem to be suitable for identifying all types of cognitive problems. I agree with last poster, we got social services involved who have been wonderful. My father is now housebound. Good luck.

10 units a day? Really? Or did you mean a week? If it really is a day, that could certainly explain the lack of mental clarity, especially after many years of chronic alcoholism! How old is he?

If he's permanently intoxicated, that could explain him not finding the tube station. Chronic alcohol abuse permanently destroys pathways in the brain and can lead to this kind of dementia-like behaviour.

Repeating oneself is a typical age-related behaviour, however, so I wouldn't put much stock in that.

I would be looking at treating the alcoholism before fighting for dementia care, to be honest

if his alcohol intake has always been this high, the confusion could be a sign of 'wet brain'.

Im work in a nursing home & come across it regularly and it manifests in a similar way to dementia.

Also a thought to consider is what answers he is giving the dr. My nan has dementia which was brushed to the sid for a long time as she was such a convincing liar & always had an answer at the tip of her tongue. Its worth talking to the dr about your concerns and check answers.

If he saw a neurologist, I'm pretty sure they would have used the regular panel of tests, which are usually very accurate in detecting memory loss and dementia, no matter how convincingly articulate the patient may seem.

My own grandfather had dementia and the first sign was him no longer knowing how to right numbers in figures, rather than letters - despite having been an engineer! Then he started being confused about the date and especially the year (he thought the war was still going on, for example)! Eventually, he stopped recognising family members and became incontinent (well, he would mistake wardrobes for the toilet etc) and that was when the NHS got involved in his care!

IS your parents GP helpful? THat might be a good route to go down - and yes is there any chance of him drinking less? With lots of support?

Did the consultant at the memory clinic ask about your dad's alcohol intake? The consultant who assessed my father told me that he does have the onset of dementia but as he is unwilling to reduce his drinking (which I was unaware of prior to this - still don't know exactly how much he is drinking, it's not a ridiculously huge amount but suspect that he is dependent on it ) the consultant said there was no point pursuing any further investigation or treatment options.

I'm just waiting for him to hit a crisis point now which is rubbish but I can't force him to stop drinking and seek help.

Who was with him? My mother can be very convincing on first meeting, less so when you can spot her conversational gambits. (Lastest is "Ah yes, I had been meaning to ask about that.." when she has no idea what I am talking about.)

I was quite mean, and challenged some of her very confident, but incorrect, answers, throwing in a couple of supplementaries "But can you name your grandchildren?". Despite her asserting she could manage independent living I made sure the specialist nurse knew she could not cook, had no heating and a host of other issues. By chance I had with me a bunch of draft correspondence trying to sort out the mess caused by my mother giving her bank details to cold-callers on the phone, which really quite shocked the nurse. My mother got quite rattled. She needs concentration to keep up appearances - ergo result. She failed convincingly, has really benefitted from treatment, and it's all much easier now the dementia is acknowledged.

Can you get the GP to ask that the test be retaken. Then, really awful, have a blazing row with your dad on the way there, push all his trigger points and ensure he arrives completely discombobulated.

Sounds like the alcohol might be a factor, yes - that's quite a lot in a day!
Also might be worth checking that he has been tested for a urinary tract infection, as those can cause confusion and memory problems too.

My Dad has the opposite problem - no dementia but worries about the amount of stuff he forgets, and was incensed at his memory clinic assessment because the things they were asking him to remember is stuff that he would never have been able to remember, even in his heyday! He's not convinced that the tests are very good...
His assessment isn't over yet so I don't know the outcome.

vitaminC
my nan had a way around EVERY question, cheeky minx. She is quite feisty so at the start the Drs put her not giving direct answers to the fact she didnt think she should be there & told them to mind their own business.
Even now if you a stranger you would think she has nothing wrong as she answers straight away and never muddles words, she will tell you exact address (she says she lives in my parents address), she says she goes and does her shopping/or is just back from the shop with my grandfather (hes dead).

shes a chancer, had drs fooled for 2+ years before she started wandering at 3am. Then the took family accounts of incidents into consideration.

shes now living in a hotel (ahem…nursing home) and loves it as she has plenty of gossip (from other confused wanderers ) but bless her shes happy.

Thanks all - Dad does hoover at least 10 alcohol units a day. A couple of stiff scotches and a bottle of supermarket wine prob adds up to more than that, as it happens.

He went to the doc himself to raise concerns, which shows anyone who knows him quite how bad he is, but I very much doubt the alcohol word was used. He is a highly accomplished chatterer- it was prac his job -so I can see how he slipped through the net.

Bet you his alcohol intake is more like 16-20 units a day tbh. Its certainly going to be contributing a lot to issues.

Did someone from the family go with your dad to the memory clinic? I went with my mum and they talked to us together and separately so they could hear how she really is - and do specific tests to look at the areas she struggles most with.

Another reason for being there at a memory test is that you then understand where the problems lie.

DM aced pretty much everything - she was an Oxford maths scholar - other than questions around orientation. A diagnosis means I can be firm when I need to be, eg tablets are locked away, and she does not have a cheque book, but also explain that she is not mad. There is damage to a single area of her brain, which is a disability which needs working around.

She can still clean up at bridge and regrets that they don't play for money!

Attending memory clinic appointments also allowed me to ask lots of questions about the management of problems and, say, how as POA I would best involve my mother in decisions making.

The diagnosis was so important in getting to a position where thee is understanding and acceptance.

Thinking of you. I read this on the dementia thread - and as someone said on there do keep posting on it if you like :) x

Thanks so much! just finished with a 20-min call where every single word to Dad triggered an anecdote so achingly well worn I can singalong with it...

I work for a local memory service. In your situation I would call them and fill them in on your concerns. Often the patient or even spouse doesn't give the full picture .
If he hasn't given consent for them to talk to you they may not be able to give much info but they should take on board what you say.
The basic memory tests, mmse, are too basic. For some people, especially if they have a high iq.
You could as for a functional assessment by an OT which can show how people manage everyday tasks.
Also ask if there are any dementia support services locally.
The alcohol will certainly be a problem here and he should be strongly encouraged to cut down but I know that could be difficult.

Sounds so familiar.. My father has been diagnosed but he drank like a fish ( he has now stopped). He was superb with the memory tests but nobody asked him anything further. he ticked the boxes so was fine. He now has nurses that come to assess a medication and his mental state .I was present. He is great at superficial conversation and came out with the usual comments and phrases and went off into his "when I was ..... Stuff. when I asked further he had no option but to say "i don't know'.... Don't give up I wish I could help more but I am miles away and my mother deals with it and itis so very hard on her as well However what you are saying sounds so familiar. I wish you luck.