Are Alzeihmer patients aware they have dementia?

[MrsPS3]

A family member has been diagnosed with Alzeihmers, she doesn't know yet but the family are planning to talk to her before the consultant. This is understandably a very difficult conversation and some family members think this is going to be bad for her as it will cause her a lot of suffering and she seems pretty happy right now.

What I think is that it will definitely cause her suffering when she receives the news but that maybe she will forget later that day or the day after, but how likely is this to happen? She has moderate dementia, she forgets things, sometimes has forgotten important things but definitely not forgetting everything all the time.

Can anyone share experiences on how this was for their family members?

My mums not aware no
It doesn't sink in if we tell her so we've stopped

Shell say 'my memory is very bad' but that's as much insight as she can manage

How have the family members found out about this diagnosis? It’s not great that they know but the patient appears not to have been told. At the very least, she should have been present when the GP gave the diagnosis.

@Soontobe60 There isn't an 'official' diagnosis yet as the next appointment with the consultant will be in a few week's time but some results were available to see. Someone in the family is a medical profesional and could interpret that those resuts would lead to that diagnosis

FIL is aware he has dementia; his diagnosis actually came as a relief to him - he’d been getting very frustrated and angry, and knew he was behaving strangely. When he was diagnosed he settled down and could explain his inability to do things as ‘it’s my memory’ or ‘its my illness’.

That said, he is a passive, lazy man and not being able to do stuff has suited his personality very well.

The only thing that upset him was losing his driving licence.

He was diagnosed about 6 years ago and is still only middle stage, mostly about memory and executive function.

I think at some early stage they know something is not quite right and try to disguise their problems with memory, afterwards as the disease progresses no.

My mother did know in the earlier stages, she actually went to the GP off her own bat and asked to be referred to the memory clinic.

But that is unusual, most people with dementia don't know, deny it, or simply cannot retain the information for more than five minutes. They are often aware that something is wrong and probably the kindest thing to say is that they have 'memory problems'.

@catofglory That's what I think, that she won't retain the information for very long, but some members of the family think that from the moment she knows, that will stick with her all the time and cause depression

My mother was told by her GP and apparently accepted it (tbh she’d have accepted anything he told her) but had forgotten by the time she got home maybe 15 minutes later. If we tried to remind her she just got very cross - there was nothing the matter with her! - so we soon stopped, no point.

I think this often happens - at any given moment they can’t remember that they can’t remember anything (if that makes sense) so pointing out that they have a horrible disease with no cure, is only going to cause distress, even if it soon passes (because they’ve forgotten again.)

My mother remembers that the dr had told her she has dementia, but she doesn't believe it. She thinks she's fine.

@GETTINGLIKEMYMOTHER was your mother's dementia advanced when the GP told her (and then she forgot) or early/moderate dementia?

In my opinion she should know, especially as she sounds able to now clearly state her wants and needs going forward.

In my limited experience knowing they have control by stating their wants and being reassured helps. No it may not be remembered but at least it will give her an opportunity.

Lost my mum recently, she only had neurological issues at the end. It has really helped knowing we did a few things she wanted. Wishing your family good health and peace.

It was fairly early on, but had become pretty obvious to close family. E.g. the day the penny really dropped for me (we’d been through it all already with FiL, so my heart did sink) was when she phoned her bank about something (she’d always been very financially savvy) and could not remember, literally the instant she put the phone down, what they’d said. 🙁

My DM still thought there was nothing wrong with her when she could no longer even make herself a cup of tea. It wasn’t ‘denial’ - she simply couldn’t remember that she could no longer do so many things she’d always done.

My grandad knew that he couldn't remember things and find words. He was incredibly frustrated and unhappy about it all. Went to a day centre in the week to ensure he was fed and saw people. It was a really good place, although I have a feeling that budget cuts will be doing away with that sort of thing now. My aunt refused to believe that there was any issue at all and wouldn't see the doctor for a diagnosis, or any possible treatment. It was almost certainly the dementia affecting her to do that.

It depends on how early the diagnosis is.

My experience is it varies from:

They know and are able to use the information helpfully

They remember but think you are wrong about it

They don't remember at all

@Marblessolveeverything , but what’s the point, if the person is only going to get very upset (or angry!) - only to forget so soon afterwards anyway?

As for what they want, there may often come a point where their needs are going to have to trump their ‘wants’ - e.g. when 24/7 care and supervision have become an urgent necessity.

It's better if you talk to her and she has some kind of idea of why she is going to the appointment eg seeing the Dr about memory problems otherwise it makes the appointment a lot harder if the person has no clue why they are there and it's a surprise to them when their family members start listing their concerns. It makes the appointment awkward and gets it off on a wrong foot if nothing has been said

You can leave it to the Dr to give the actual diagnosis (after all she might not have it) but it's only fair to let the person know what the concerns are for going in the first place. If they have mild dementia they will remember if it's more advanced they may straight away forget what they have been told.

There's no place for not informing someone about their diagnosis in medicine these days. You cannot keep it a secret so as not to upset them. It is upsetting and she may well be very sad about it for a while or for longer but that doesn't mean you should lie. It just leads to issues down the line eg the medication says what it's for on the packet so if that is prescribed she may read it.

In the early stages it is possible for them to remember.

It can help, as sometimes otherwise they try to hide memory problems etc and that can lead to a lot of issues!

My parent is very clear that they don't have dementia and this lack of insight is why they're under a DOLs - a deprivation of liberty safeguard. In fact, arguing that they don't have dementia of any kind of one of the few things that they consistently remember year in year out. They have physical exercises that they do to 'prove' that their brain works ok, and so on. (After a stroke one evening, when the paramedics were there to take them to hospital, they took the opportunity to show how they could still jog along the corridor - the ambulance mens were so bemused but still took them to hospital where tests showed that they had had another stroke). In many ways it's been a galvanising diagnosis as they're much more active, communicative and focused. Unfortunately, they do still have dementia...

One thing I’ve read (re initial diagnosis) is for an accompanying relative at the appointment, to sit slightly behind the person. They can then shake their head unseen if the person gives a wrong answer (which they will think is right) to any question like, ‘Can you still manage to do your own shopping/cooking/housework/paying your bills?’

My nan does know, but she forgets (😂) sorry, gallows humour there

There's no one size fits all answer really.

Some people will have insight into their diagnosis, that might mean they fully understand it and people react to that in different ways. Others might recognise there is something wrong but can't exactly say what, they might describe feeling forgetful or more vague feelings of something not being quite right, feeling fuzzy, something in their head.

Some people won't recognise anything is wrong at all, even after being told their diagnosis. They might not recall they have been told or might recall being told but still feel they can do everything they used to do, so don't have any symptoms.

It's always useful to have conversations with people, at any stage about what help and support they might want in future. For people who don't recognise or agree with their diagnosis you can always phrase this as what might they want if something happened in future. Conversations don't have to be super formal but can be started based on things you see on TV or read in the paper. You might see a person in a soap who is ill for example and start by talking about what you would want if you were unwell, who you would want to help you.

Power of attorney is important to get if possible.

No matter a person's understanding of their diagnosis, the important thing is getting the right support. Both for the person living with dementia and the people around them.

That's a good idea, also to say you do need a bit of help with that, sometimes we all get a bit forgetful and need a bit of help. Not sure I would tell them before the doctors appointment, maybe just say its a memory thing and we want to help.

I think it's odd for family to tell her a diagnosis she has not yet been given. Other types of dementia exist. What is the rush?
The days of doctors telling the family an unwelcome diagnosis before the patient are now largely gone in the UK. Some relatives got over anxious about the patient getting upset by a diagnosis which meant they were lied to or kept in ignorance

Mum was told but she wouldn't accept it.