No dementia diagnosis for elderly mum despite major personality change

[Showdogworkingdog]

My 80 year old widowed DM came to live with us a year ago. She was anxious, hardly speaking to anyone and she’d lost a lot of weight. The move was intended to be temporary while she got back on her feet, she had some physical heart health issues and she couldn’t see or hear properly. Then she had a few traumatic hospital admissions where she suffered with delirium. Since then she’s had her cataracts done, hearing aids fitted, her weight is now steady as she’s eating regularly and before this heatwave we’d walk daily which is more exercise than she’d had in years. But if I didn’t prompt her she wouldn’t eat or drink or move from her chair and she still barely speaks. She also gets really anxious still about anything outside of her usual routine. She’s just like a different person tbh and I can’t see her being able to manage independently.

We recently had a long awaited appointment at a memory clinic and I was expecting a dementia diagnosis but to my surprise the Dr says DM’s memory is fine, she scored highly in the tests and there’s nothing in her head scans to suggest a vascular cause. The Dr believes she’s suffering with anxiety and depression and prescribed an AD (sertradine). Six weeks on and she’s no better; still not talking, still very anxious, not interested in doing anything, staring into space and needing to be prompted to eat and drink. I’m afraid it’s just not sustainable for any of us. I’m now unable to go anywhere spontaneously without arranging a ‘mum sitter’ and I’m constantly worrying about whether DM is drinking enough, eating enough, if her bp is too high or too low, remembering to give her complex medication on time etc…it’s a constant stress. I feel like my DM has gone and this other person has taken her over.

I just don’t know where I go from here. Has anyone else not had a dementia diagnosis when they were expecting one? Is it plausible that her anxiety and depression have changed her personality so much? My DM will be seen by a community nurse at some point and I’m hoping the nurse will be able to help my DM recover some independence and enjoyment or at least show me how I can best support her but in the meantime I wonder if anyone else has any advice?

The difficulty you have is that there are many things (particularly if she's had delirium) which can mimic dementia without being dementia. My dad had a fall last year, developed post operative delirium and lost all capacity etc overnight, but he didn't have dementia though it 'looked' very much like it. He died in September last year from previously existing heart failure.
So it is entirely possible that your mum doesn't have dementia but has other problems. I'd also be looking at getting a care package in place because it sounds like her needs are beginning to outweigh what you're able to do.

I would go back to the GP.
Presumably the Memory Clinic has discharged her, so I would tell the GP there has been no change after 6 weeks and see what else can be investigated or what other medications can be prescribed.
Some dementing illnesses don't have memory as the most prominent component, and there are other conditions that can cause the symptoms that DM is suffering from.
Hope you get some resolution.

We went through all.of this with a family member with personality changes. Memory tests = fine MRI = fine PET scan = fine
Until finally a Lumbar Puncture showed Alzheimer's Disease. 2 years fighting and fighting as we knew sometjing was not right. Its totally unfair.
We were tokd its anxiety/its depression and rhen its Mild Cognitive Decline
No it was Alzheiner's exactly as we thought.

It sounds a bit like my DM. The consultant reluctantly said he thought she probably had dementia but this was because of physical deterioration and poor speech. She is now in a care home and probably could still pass a memory test if anyone could understand her, but clearly has dementia demonstrated through anxiety, fixation on timings and complete lack of empathy. I googled and think she has frontotemporal dementia.

I would ask for a social care assessment based on her condition. It sounds like it may be time to get in carers and additional support and/or consider care homes based on finances.

I am so sorry, it’s horrible to see the person you love change into someone unrecognisable.

NB I said no to a lumber puncture as all of us - consultant, DM and myself- felt it would be a very hard procedure for her to withstand. Her brain scan showed normal deterioration only, mind you so did DFs and he has completely lost his memory.

Thanks everyone. I’ve been reflecting on your thoughts and experiences. It’s reassuring to hear others have been through similar experiences. I’m going back to the GP and I’ll also talk to my DSIS about bringing in some carers. While my DSIS lives locally and steps in willingly if I need to go anywhere, it is starting to get me down and I don’t want to resent my DM who would be aghast at the prospect of being some kind of burden on us if she was herself. We had carers early on following one of her early hospital admissions but they were the ones arranged by social services who rocked up anytime from 7-11 for the morning call and 6-10 for the evening call and my DM got really anxious about what time they’d be coming to the extent that we ended the arrangement early. But I’m sure we can get something a bit more reliable sorted out, my mum does get AA.

And thanks for the info re Alzheimer’s, I thought that was memory related but I’ve done some reading today and it does really sound like her, worth mentioning to the GP to see if that’s something we can look into.

I think I kept hoping the next thing we tackled would improve things for her - the cataracts, the hearing aids, changes to her medication, the memory clinic and the ADs - but actually nothing is improving, it’s just getting worse. I feel so guilty as I really want to help her, she’s so anxious and has no interest in anything, it’s a miserable existence and I do want better for her. But even if she is diagnosed with some form of dementia at some point then there’s no treatment, just the certain knowledge she’ll get worse. It’s really shit isn’t it, sorry to all of you who have been through this xx.

Post surgical delirium is a weird thing. My late OH had Parkinsons and was ticking along with the problems, which included anxiety, but then he fell and featured his femur. After the surgery he was seriously psychotic believing I was trying to kill him and other grim things. They said it was delirium and it would pass but it didn't... poor man died about months later still mad as can be and terrified .. it was unspeakably awful.

So I do think that surgery or hospital admissions for someone who is already physically vulnerable can have long term effects that are difficult to define and diagnose specifically.

What a difficult situation for you.

Yes, we've absolutely had this experience. It's completely obvious to me and others that DM has dementia - I was pretty sure about three years ago, and she's got much worse since. Memory is awful (originally short term, but now starting to lose really significant long term stuff, and not really understanding key family relationships any more), intense anxiety, social withdrawal, inability to do almost anything now (no admin, cooking, housework etc). She can still just about wash, dress and toilet herself, though she can't choose the right clothes now (this is the latest development). And big personality change - she's now often aggressive, tearful, no empathy. She 'trails' whoever is at home, unless she's sat watching the same TV programme, which she watches on repeat. Very soon I don't think she'll be able to be at home alone at all (she probably shouldn't be now really, but she just about manages for a couple of hours) , which I think is when things will really deteriorate for my dad. They won't entertain care of any sort atm.

Various appointments over the last few years including two GP memory tests, a full memory clinic assessment, two neurologists and an MRI which showed some degree of atrophy, but nothing except a diagnosis four years ago of mild cognitive impairment. I just don't get it, tbh - she stopped being able to mask long ago, and it's weird to me that they don't diagnose. I've finally come round to the view that the diagnosis doesn't really matter - the situation is what it is. She's just had a second MRI, so we'll see what says, but after that I'm going to suggest that she resists any further appointments as she finds them so distressing.

The whole thing is hideous, and although I still get moments of the old mum, they're increasingly rare. I'm so sorry you find yourself facing similar.

My mother was 'slow' to get a diagnosis (Alzheimers) although she did eventually. I understand the desire to 'know', but as PP said in reality it makes little difference.

I would carry on 'as if' she has dementia because that is what her behaviour is telling you.

From a practical point of view, what would you do differently if she had a diagnosis? I'm sorry to say this, but it seems very unlikely she is going to get better or regain her independence, so I would plan for that.

My mother lived with dementia for ten years. It's horrible, I sympathise.

In my experience it doesn't matter to medical staff or to how they deal with people because it's needs based rather than diagnosis based, so they are not that interested in diagnosing people after a certain age. My relative became severely cognitively impaired after a fall but the hospital said they could find nothing wrong with her even though as her family we were telling them she wasn't like this before the fall, she's a different person. She was still placed in a nursing home with full care after her needs were assessed. Similarly I have another relative who lives in a secure dementia unit but doesn't have a diagnosis of dementia because he didn't have LPA and they said he had to go to his GP himself even though he couldn't remember anyone's name or where he was at this point. At least he still gets specialist dementia care based on his behavior and needs but for family it's very frustrating I know because you're left feeling but what if it's something else and there's a treatment they're missing out on.

Sometimes folks don't go back to baseline after delrium,my mum hasn't. It's such a horrible thing.

We have had most of what you are describing, about 2022, Mum was 81 at the time, but we did get a diagnosis of Alzheimers, and similar at Memory Clinic. She is now 85. At that time, she was OK for toileting, walking, watching TV, and my Dad was sorting all admin, food etc. Until the last 18 months, Mum has "presented" extremely well at every appointment, cheerful, clean, lucid even, and I have had to insist that they listen to me (I've got LPAO, which is a must) because the outward face is quite good. In reality, it has been a bit of nightmare, but the last 6 months have been particularly hard, she is now housebound, and although she is not incontinent, accidents happen every day, she eats sometimes, she won't other times, she looks at the TV, but does not really see it, she only repeats the same phrase over and over, she will not wash (we do it). My dad (who is 85, fairly fit and absolutely lucid) will not hear of carers coming in (to be fair they were hopeless when we did have them for a while), nor her going into a care home, so I have his wishes to deal with. There isn't much I can say to make things better from your post. And I can imagine it is awful, (at least I have got my Dad) BUT maybe the one thing you have got in your favour, is (weirdly) that you haven't got my Dad ! My advice would be a) get LPAO if you have not already, this is a must, and it is actually quite a lot easier if there are no diagnosis of dementia b) once got, push for re-diagnosis (not sure it actually helps, it does not open up lots of options, but at least recognised by the NHS) c) investigate other options, maybe your DM will recover mojo, but sounds like you know where you are at, we all want to do our best by our parents, but I know from dealing with my Mum that the person, and the Mum that she was once has long gone. Sending love, it is bloody hard x

My nanna was never diagnosed despite our best efforts. She was admitted to a care home as her dementia was so advanced but nobody had any interest in properly assessing and diagnosing as she was ‘getting the care she needed’ it was infuriating.

sorry to hear you are going through this too. Fortunately I have got LPA for health and finance, DM insisted we do that about 8 years ago as we went through a nightmare with my grandparents- health care teams wouldn’t share information about my grandma’s health with us citing confidentiality and were asking her to make decisions about her care when she wasn’t herself- but they didnt know that of course. So glad she did, it has at least gone smoothly.

I have to remind DM to change her clothes and get a complete set of new clothes and underwear out or she’d wear the same every day. I found that out one day as I was emptying her washing basket and realised there was only one pair of pants in there- turns out she’d been putting a new pad in the same pair of pants for several days. Now I put out fresh pants, a pad and a nappy bag to cover all angles.

we’ve got another GP appointment next week so I’ll see how we get on and what we can do next. My old DM would be so upset to see how she is now, it’s so cruel. So sorry.