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.