To think that getting a diagnosis for early stage dementia takes too long?

[Sweetpotatocurry]

I suspect my FIL has early stage dementia. My DH and MIL have been concerned for a couple of years. First noticed signs about 4 years ago. They all spoke about it but thought it would pass, and didn't really take it seriously until last year when he twice put an electric kettle on a gas hob to boil and several times put petrol in his diesel car, among other things, and friends started mentioning to MIL that he was repeating stories constantly and forgetting things that had been said in the previous hour or so. He is late 60s.

I guess it has been easier for me to recognise and accept there is something seriously wrong as I am on the periphery. He has had scans and tests done, and while they agree his memory is deteriorating, they say it is no worse than average. I just cannot see how this is the case, seeing other people of the same age, and my own parents who are ten years older and nothing like as bad memory wise. In an hour he will tell me the same thing three or four times. Over Christmas I asked him to get me something from another room while I was busy making dinner, and he could not remember by the time he got there, three times. It was heart breaking.

He has lost confidence and keeps telling everyone how his memory is going, so it is very sad. He is a really bright man and he is now quiet and solitary in groups, where he used to engage in lively discussions. I feel so sorry for my MIL too as she is now doing everything apart from showering and dressing him.

So am wondering what we can do. The science seems to say catching it early and treating early is the best strategy, to slow things down. But if diagnosis takes so long, it seems catch 22. When he went to the doctor last week to receive some blood test results, MIL said he was fine and better. But he had just had a good day. Since then she says he has been really bad. But they are the type not to "trouble" the doctor. I know she is really worries, but she seems to have her head in the sand she keeps saying maybe he will improve.

Is this slow process typical and is there anyone who could help us in what we could be doing to help? Thank you

I don't know much about the diagnosis process, but it sounds like something is not right with his memory and the GP should be picking up on that. FIL is only late 60s, so no way should he be putting kettles on the hob etc. The Mini Mental State Examination (MMSE) is probably the one the GP should be doing - info here:

www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=121

See if you can go along to the GP with FIL, so that you can give an outside view, and insist the GP doesn't just palm you off with "it's normal" (it's not normal, sorry). If MIL is telling the GP that it's all ok really, that won't be helping in getting him diagnosed (although is totally understandable of her).

If you need more support, try the Alzheimer's Society (see link above) as they will be able to better advise you. Best wishes

When he went to the doctor last week to receive some blood test results, MIL said he was fine and better

I think that's the problem isn't it?

Blood tests and brain scans may well be normal, and he may score OK on a basic screening memory test done by the GP. So if the GP is being told by family that everything is "fine" they can't really be expected to know that it's not. Someone needs to give the GP a clearer picture of what's going on, then the GP can take it from there, depending on local services that may mean an onward referral or more tests etc.

I'm not being critical of MIL, I'm sure she wants to think things are fine but by telling the GP that, she is potentially delaying diagnosis and treatment, either of dementia or whatever else may be causing FIL's problems.

My dad so desperately didn't want my mum to have dementia that he would minimise her issues to the GP. And her type of dementia takes a long time to score as dementia on the MMSE, so without knowing that (at the time of diagnosis) her issues were around language and recognition they couldn't do the appropriate test.

Going with FIL to the GP with specific examples is a way to ensure they have all the informatiion, and that you hear what the GP is actually saying, rather than filtered through MIL

I work in older people's mental health as a senior nurse, from what you describe I am surprised a diagnosis has not been made.Many older people have mild cognitive impairment but you are describing functional loss as well, this is often more relevant than brain scanning. I would keep pushing for further memory clinic assessment,keep note of incidents of functional loss such as the kettle on stove. Also clarify if his wife is now taking on activities for him which she didn't before such as reminding him to shower,change clothes etc, it's easy for caring tasks to become normal when they indicate a change. I often tell relatives that they have probably seen changes for a few years before official diagnosis. Also some dementia types don't always present with the memory dysfunction picked up on simple MMSE, frontal temporal dementia people can often demonstrate reasonable memory. Keep pushing for regular reassessment.

Thank you very much for your help. I will pass this on to my DH and get him to go to doc if possible. I didn't realise there were different types, but of course that makes sense. And thank you for the links.

It's a tricky one, isn't it? DM went to the GP (knows she is forgetting names etc and her DF had dementia) who did a 20 question test, plus she had to count back in 7s from 100.

That was all fine, but the GP referred her for an assessment which was in her own home, in much more depth. I think over 3 visits? That came back as fairly standard memory loss for her age. She then has the option of having this repeated annually.

I find it incredibly difficult to talk about this with her and always try to placate her by saying I don't think she's too bad, which is probably the wrong thing to do. Horrible, horrible disease. Not sure that's helpful, but I do agree, the diagnosis seems hard to come by early on.

My dad has dementia; it took a long time to get a diagnosis because he refused to see a GP about it, as he believed there wasn't any treatment available.

Eventually, he agreed to go after being told about Aricept. He is now on this, but his dementia is still progressing (albeit slower than without treatment).

Dementia is such a god-awful, cruel disease. I can see why people would go into denial about it.

We are in a similar position with DFIL - we all know he is quite poorly now (God bless him), and he's become very quiet in any social situation. But when dmil went with him to a memory clinic recently, apparently he aced the tests! So no diagnosis here, yet we all know he's unwell. It's not, for example, ideal that he's left alone at home in the day, but dmil, dh and myself work, so we are not sure what to do. Oh, it is so hard.
Sorry, OP, no help there, just venting. Do hope you are all ok.

My mum was diagnosed very quickly after seeing a geriatric psychiatrist. She was started on arricept which seems to be holding deterioration at bay.
She is seen routinely by him every 4 months for memory testing etc. She was referred by her GP.
Has your FIL been referred to anyone?

Yes, definitely. And I say that as a professional in the field and as a concerned family member.

My DGM has what I believe is Alzheimer's disease, her mother died of it and she is experiencing confusion, memory loss, difficulty sequencing etc. She's been to the GP, who has done screening with her, but unless she 'screens in' she cannot be referred to the Memory Assessment Team for further tests. As my gran has a good social front and refuses to accept her memory loss the screening tool used by the GP is not subtle enough to pick up on her dementia meaning she cannot be referred for further tests. As I work in the field I am aware of medication she can have to delay the progression, and it is far, far more successful when started early, like last year! It is incredibly frustrating.

As a professional I am aware of the humongous strain mental health resources are under and how ridiculously short staffed most community MH services are, for adults, older adults and children and think it is a disgrace. I see families struggling to manage the aggressive behavior of usually mild-mannered relatives and how hard they have to fight to be seen by a CPN or Dr for medication reviews, it's heartbreaking.

My own DM has dementia, and although she has the diagnosis, it has not changed anything. I mean she has no professional help or support, no check ups, treatment, we are just left to "get on with it". We are getting quickly to the point we can on longer cope (we visit 4 times a day) so in the New Year will be actively looking to see if there is help somewhere. Does anyone know what there actually is to help her/us?

Has your FIL been referred to anyone?

It doesn't sound like the GP has been given enough information to think a referral may be necessary. That's why I said the family need to inform the GP what's going on. If the GP suspects dementia, then depending on local services geriatric psychiatry, geriatric medicine or neurology would be appropriate specialties.

like dottycat123 I also work in old age mental health services, but overseas so I'm not up to date with UK services

leopard feel free to PM if you want advice/ support about thing to help your mum. That's my area of expertise.

My FIL is in the same boat but his GP still says it is just normal age related forgetfulness. That is bullshit. He is 70 and his own father went the same way at 70 and died at 72. FIL calls DH and has a 20 min conversation then calls back 5 minutes later and has forgotten the whole thing. This can happen several times in a row. He got lost the other day for 3 hours trying to find BILs house. He refuses to believe anything is wrong although in social situations he barely speaks now as if he is worried what he might say. Its very sad although I'm not sure what a diagnosis would achieve?