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?

She hasn't been diagnosed yet, at some point she will need a capacity test if you need poa or deputyship in the future

For my Nana she knew and that was better for her. She found the voids in her memory really frightening and said the experience as it progressed was like going into a black tunnel.
When she was lucid and we spoke about it, she knew what was happening and that we understood her and we were supporting her, this was calming and made her feel safer because she knew (in that moment) that when she was back in the confusion she wasn't alone.

Stress stays in the body even when the memory has faded, so yes we had to have the same conversation more than once, but the net effect was still beneficial as that calm feeling of 'safety despite adversity' lingers even when the memory doesn't.
That said, it's a roller coaster and nothing can shield her from all of it.
My Nana had been widowed with five young children as her husband had a fatal accident, there were times when she was reliving that and we couldn't do anything about it. 😞

A friend's mum is currently going through it. She is an intelligent lady who had a career and managed a full life, so when things are 'missing' or someone 'didn't tell her that' she is actually suspecting people of deliberately concealing things or going behind her back, with her personality changes she has lost some of her diplomacy. So in that scenario if it also came to light that you had withheld information it would make for greater suspicion / reduced feelings of safety.

So for your family member whatever you choose to do could have unexpected effects. You can't predict everything or how her illness will unfold it how her character will change etc etc, so for that reason I would pick truth over obfuscation because you need that to have a leg to stand on and to stand the best chance of her feeling trust in you, which she will need over anything else then it gets frightening for her.

I was aware of my relative’s condition years before they were diagnosed so I read up about it and was prepared for what would come. She didn’t accept the diagnosis and was angry with DH for taking her to the memory clinic but had so many other conditions and appointments that she forgot quickly and stopped blaming him - although she was definitely a few years in to the illnesses (dementia and Alzheimer's). at that point.

Knowing about it helped us to know how to ‘roll with it’ when she said something ‘odd’ or ‘wrong’ by just going along with it and not arguing/correcting. In my view, where a lot of the distress comes in in the early stages, is the fact that the person is ‘in and out’ of the process so will be aware sometimes if saying something ‘wrong’ and feel embarrassed and upset if corrected. It’s also easier for the family when they know because they hopefully realise that some of the angry/upsetting etc things that might be said/done are the illness, rather than intentional actions and situations don’t escalate the way they might otherwise.

My experience was that my relative became much less depressed and angry as the illness progressed and she forgot all manner of upsetting things that had happened more recently in her life. I also learnt a lot from the staff in the nursing home about how they related to the people in there - they didn’t ‘correct’ them, they went along with strange scenarios in conversation and they encouraged ‘former behaviours’ from the person’s distant past that made them happy and distracted them when things were upsetting. So, there were women who’d been nurses that liked to fold up things and would happily deal with the tea-towels etc.because they were enacting routines from their earlier lives.

To come back to your question, knowing that you’re forgetting things, finding it difficult to deal with life’s minor upsets etc is difficult and stressful anyway so I wouldn’t agree with your relatives that a diagnosis will cause depression and anxiety. This will be there anyway. Also, medication can make a real difference to some of those feelings and behaviours and a diagnosis will help with the prescription of the right ones and other things that can support your relative. All the best - I know how hard it is for everyone concerned.

I think it’s important that people know their diagnosis. Even if they don’t believe it, or remember it they are often aware that something is wrong which can be worse than knowing.
i made sure my dad is aware, he was convinced he had dementia before the diagnosis and when he got it he didn’t (want to) believe it! I use the word dementia (although also reference that it is early stage) but also talk about his brain injury which seems easier to accept/ there is less perceived stigma. I remind him that because we know, we can put things in place to keep him at home and to follow his wishes in the future.
My auntie (his sister in law) didn’t have POA in place, and her last few months were dreadful. Dad seems reassured that this will not happen to him as we have a plan in place.
Good luck! It’s an awful diagnosis but not everyone will inevitably deteriorate to the worst case scenario.

My Mum never had any insight into her condition and would have been heartbroken to be told that she had dementia, right up until her last days. Although people tried to explain gently that she had a bit of a memory problem, she would never accept it and no-one ever actually told her that she had Alzheimer's - she deteriorated badly at the start of the first lockdown and by the time she got a proper diagnosis, she had got sufficiently bad that there seemed no point in telling her and distressing her even more than she was already upset by the way the dementia was affecting her. She never accepted that she was mistaken about anything and that the young woman and little girl who she believed were living in her spare room might not have been real, and most of the time was she living in a complete fantasy world.

On the other hand, my mother in law knew that she was starting to have problems and was terrified. She had seen her own mother suffering from vascular dementia many years before, and took herself off to the doctor when she first became worried about getting forgetful. There was a period of about six months when she knew what was happening but things progressed quickly. The last near normal conversation I had with her was a phone call when she said that I must get my husband to get POA very quickly because she wouldn't be able to make any decisions for herself soon. She's still alive and is in a near vegetative state in a nursing home. It's such a cruel illness.

For anyone dealing with dementia i recommend wendy mitchels book ‘somebody i used to know’ - she was diagnosed with early on-set dementia some years ago and writes about her own experience. Sadly she died recently but her books (written with help) offer an insight of what its like for some people.

@GETTINGLIKEMYMOTHER the point is to help the family know they have listened and have guidance of her wishes. This was absolutely paramount to her family. And honestly it is a comfort knowing we tried to, for as long as was possible to keep her voice in the room when decisions were made.

The most common problem I hear from friends is their concern of not knowing their loved ones wishes. These relate to non medically requirements. There are lots of small decisions along the way - a tiny example, one of the nurses kept trying to engage my mother in puzzles, she hated them always but loves colouring. So we arranged adult colouring books, it's only a tiny thing, but I know it brought me a little comfort that mum was heard.

So our family is all about sitting with someone and asking their wishes so we can include them. We follow their lead, they stated their funeral wishes etc

I appreciate this may not be possible depending on the severity of symptoms and timeline.

My MIL is not aware that she has dementia. There was no one with her when the diagnosis was made so we don’t know what she was told and as others have said she’d forget almost immediately anyway.

I have mentioned dementia to her but she doesn’t think she has it so best to say nothing. She just says she doesn’t feel quite right. Her dementia is quite advanced.

My DF doesn't seem to be aware that he has dementia, we have told him but he forgets, so now we just say your not very well which he seems to accept better then naming the illness. There are some people in the care home who aren't quite as far along with dementia and will say things about being muddled and forgetful so I imagine there must be a point where you are conscious there may be an issue

There seems to be huge variation around this. My FIL has a form of dementia which is more about executive function than memory, and although he is definitely well into the mid stages and may well need a care home quite soon, he is nevertheless very aware that he has dementia and will talk about it during his more lucid moments. My DM has MCI and is very aware of and distressed by her memory loss - but if and when it progresses to dementia I wouldn't be surprised if she forgets or gets confused about the diagnosis, as she is already confused about some other medical tests she's had recently.

While Wendy Mitchell (who I only heard about very recently) managed to write books and give talks about dementia for years after her diagnosis. Reading her books now, I'm staggered by what she managed to achieve.

My mum is on verge of diagnosis and 100% aware of it.

It also depends on the personality of the person being diagnosed. My Mum cannot cope with knowing the words Alzheimer's or Dementia as a diagnosis, but will free admit to having "memory problems".

It's not about keeping the diagnosis from her, but more of a kindness of how it is referred to (after all, they are only words). She also hasn't asked for her diagnosis.

She has medication but doesn't read the patient information leaflet - she wouldn't be able to understand it if she tried.

When my time comes, I will want to know and I will (have already started) having plans about how I will want things done. My Mum is very different to me and has never researched things or planned ahead or anything.

My Dad has Alzheimer's & Vascular Dementia & has never had any awareness of his condition, which began around 2015. He was told by two different GPs, by the Adult Mental Health assessors and by the Admiral nurse but he was and is oblivious, everything goes over his head. When he was able to speak in whole sentences, a few years ago, he was very angry about "the government taking his driving licence away when he hadn't done anything wrong" and "people carrying on as if he was ill, when there was nothing wrong with him" I tried to explain gently that he was unwell as he had Dementia, which meant that he was not allowed to drive anymore, but he hadn't done anything wrong and it wasn't his fault but he couldn't understand and immediately forgot. I now understand that it is best not to disagree or correct him as the distress lasts longer, I was told by the Admiral nurse that it is better to acknowledge and distract.

Thank you for sharing your experiences.
@FiveFoxes I think the approach would most likely be the 'memory issues' too, it is so different to saying Alzeihmer's

My Granny was the same, ignorance was bliss. As far as she was concerned, she didn't want to know. She took the medication she was prescribed and carried on as 'normal'. If they want to know, tell them but I wouldn't keep reminding them, there's no benefit to that. If they don't want to know, using descriptions such as 'memory problems' as opposed to scary medical terminology is kindest IMO.

My mum fell into the category of someone who was told their diagnosis and who simply did not believe it, then was annoyed about it and then forgot. I have posted elsewhere that at this point I realised that while the dementia was my mum's, the loss was mine. Having a relative with dementia was, for me, a living grief.

I have heard that some people live happy lives with dementia but I have yet to meet anyone who backs this up. Dementia is a one way street from my experience and it was a bed of thorns all the way from diagnosis to my mum dying last year. I was relieved when my mum was given a terminal diagnosis and 7 weeks to live (she had not picked up on the symptoms due to the dementia) as at least we had a timetable and a management plan in place.

I do not understand why dementia is noted as a condition rather than an illness. My asthma does not appear to be curable and yet that is fully supported by the NHS. Dementia is an illness of the brain in my view, and asthma is an illness of my lungs

If dementia were an illness all manner of NHS support would kick in. We would not allow our children to live unsupported or without clear treatment pathways and yet we do allow our elderly people to live this way. I just don't follow the logic, other than it is messy & complicated.

Sorry to sound so bitter but I was never more alone despite my significant individual resources (mental and physical) than when my mum was alive with dementia with Alzheimer's. I missed her every day from about a year after her diagnosis and I miss her still.

My mum took ill 15 months ago (water infection causing delirium and totally bonkers hallucinations). Hospital for 5 months, then moved to a care home on a respite basis. She has other health issues that have made her neutropenic (no defence system to speak of) so the infections affect her particularly badly.

The memory team saw her, later discussing with the consultants, and she was diagnosed with mixed Alzheimer's and vascular dementia in June.
She was very aware that she couldn't remember much, struggled with words etc and we (close family) made the decision not to tell her about the diagnosis.

She started medication in July and a month later was so much better. She was telling me things I'd forgotten!

She had another test to determine whether her residency should be made permanent, and she's been permanent for the past 5-6 months. She needs day and night care but is still lucid (it won't last). She finds some of the other residents amusing because they can't remember things, talk in riddles and says she's glad she's not like them - imagine having dementia, she says. IMO I just let her go with it - no point upsetting her.

my mother in law found out last September me and my husband signed up for the power of atterney a few weeks before she found out how long does it take until they do not do anything for themselves anymore or do not know who anyone is

@trtracy25xx it took 6 months from posting it to getting the PoA back for us (July 23 to January 24).

In November we received letters telling us we were down as attorneys on it and giving us time to object so we knew it was going through ok. Mum also received an 'are you sure?' letter around then too.

My nan was aware she was forgetting things in the early stages but was extremely defensive about it. She used to get angry with us and say ‘I bet you all think I’ve got dementia, wel I don’t! I’m just scatty!’. We didn’t push it with her and as time went on she got worse and worse. She was diagnosed a few years later and my mum didn’t tel her because she felt there was no point as it would only upset her. She’s now quite poor and can just about hve very simple conversations but they don’t make much sense. However, the further along she’s got with the illness, the more the anger has gone and she’s become quite oblivious to everything and also quite happy and chilled. Which is horrible for us to see how much of a shell of her former self she is but I suppose she’s happier than at the start when she was so angry and defensive.

It may be an idea to do a living will with her, things that will be important once she loses capacity. I've done one just in case I can't one day - what I like to eat/don't like, music/TV, hobbies, my cats etc.

My dad knew. He found it incredibly upsetting and frustrating.

I work with people living with dementia, and find that many of those who are diagnosed in the relatively early stages, often understand and retain information about their condition.

But unfortunately, the trouble with memory loss is that the affected person often forgets that they have been forgetting things, and lack insight into the fact that things are changing. It's usually a loved one who notices the changes and starts the ball rolling to get an assessment.

My DM was diagnosed a couple of months ago and can't retain the information at all. She'll come out of the consultant meetings and says "I'm not mad" but an hour later she will just shrug and say she doesn't know what all that was about. She never knows why she's going for these meetings .

I've never actually had a conversation with her about her diagnosis as if you mention anything she'll just say there's nothing wrong with her memory.

If she loses something she just says someone else has moved it, she has no concept that she can't remember where she put it.

with his mom she still doing things like walking and putting her hip out when she was with her friend shopping and walking to far I think they will not do it again she from Yorkshire and had a totally different lifestyle than me she had a lovely town to live in outside places where i am there is not much only garden centre,s she is obsessed with to put it mildly i have a skin problem so i have to avoid going out sitting in the garden really has upset me and my time being a mum two 2 of her grandchildren time will tell i look after people with the illness but when you have nothing in common with someone it is hard to say the least. I already suffer joint pains have been like this since i had the kids