Steep decline between cognition tests - and denial

[tobyj]

Trying to get a handle on DM's situation, likely diagnosis, next steps etc. She went to the doctor with memory problems around 9 months ago. The GP did an MMSE (I think, based on what she and my dad described) and DM said she got a score of 25. So not awful, but GP had concerns and referred her.

This week, she finally had her memory clinic appointment where they (I think, from her description) did a MOCA test, and she got a score of 9. The doctor mentioned the possibility of AD/dementia, but said he needed to speak to colleagues and she'd hear back in about a fortnight.

I'm trying to get my head round how the score could have declined so much in 9 months. DM is very upset at having done 'badly', says she doesn't want any more tests and bitterly regrets ever going to the GP. She thinks her low result is partly due to other factors (bad insomnia, questions she would always have found difficult etc).

It's early days yet after the test, and I can see why she's feeling shocked and upset, but I'm worried that she'll withdraw from the process. From Google, I'm inferring that a score of 9 is low enough that they'll almost certainly diagnose dementia, but I would think they might need a scan or other tests to determine what type? I'm concerned she's going to refuse any more tests, on the basis that she doesn't see the point and just thinks they're going to lock her in a home. I've already tried to reassure her that nobody is going to do that, and to say that it's important to determine exactly what's causing her problems so that they can give the correct medications, support or whatever, but I'm struggling so far - she starts to come round, but then forgets the conversation and goes back to her previous position. She's depressed, highly anxious, suffering panic attacks, becoming socially withdrawn, having phyiscal dufficulties (bad arthritis) and also having some hearing problems (which she won't get tested for). And yet on other days she seems pretty ok - still reads books, goes to the theatre, goes on holiday etc. Tbh I'm surprised too that her score was quite as low as it was.

It all just feels like such a mess.

The MOCA test is harder than the MMSE test. It is said to be better at detecting early dementia better than the MMSE. Your DM may have been tired, having a bad day on the day of the MOCA test but further tests will help determine that.

How is her overall health? Particularly her heart and circulatory health? My dad had vascular dementia as he had heart failure and his ability to do things declined much faster than my mum's Alzheimer's progressed. So it's possible she has declined significantly since the MMSE.

Here is an article comparing the two tests
www.verywellhealth.com/alzheimers-and-montreal-cognitive-assessment-moca-98617#:~:text=The%20MoCA%20includes%20some%20tasks,mild%20disease%20than%20the%20MMSE.

I just noticed she has untreated hearing loss. I would try to get that resolved. Research into the links between hearing loss and dementia is growing and some research has reported that:
• The risk of getting dementia almost doubles if you have an untreated mild hearing loss
• With a moderate hearing loss, the risk of dementia triples
• With a severe untreated hearing loss you are five times more likely to develop dementia

www.leedsth.nhs.uk/a-z-of-services/hearing-and-balance-centre-audiology/hearing-loss-and-dementia/

It could be that her hearing loss is moderate to severe and she didn't hear some of the MOCA instructions properly. So did badly on the test.

Her hearing loss could also account for being socially withdrawn eg can't follow conversations and the anxiety and depression will follow on from that.

When my mum had her MOCA test in 2020, the consultant said it suggested moderate decline. I don't remember her telling me the score, but she did tell me the areas where Mum struggled. We had quite a long chat after that and, based on the information I gave her, the consultant amended mum's diagnosis to mild to moderate decline. At that point, Mum was still able to make her own meals, go shopping for the basics and many other day to day tasks. The consultant was surprised by how much my mum was still managing to do by herself, given how she presented during the test. But she did say that everyone was affected differently and that was why background information was important in addition to the test when making a diagnosis. She also said that Mum could do the test another day and get a different score, or do the test at home and get a different score, due to being in her own environment.

I also remember the smaller test being performed at home when my mum's decline suddenly became very accelerated and she scored 15 out of 30, which was higher than expected. At this point she was no longer able to make her own food or care for herself in any way and had no short term memory to speak of. The score was referred to several times by her social worker when I was trying to push for more care for her, as if to suggest she wasn't as incapable as I thought. The carer would arrive, ask if she needed anything, Mum would say 'no' in a convincing way and the carer would bugger off. It was very stressful. The test is just one tool of many. Personally, I have found common sense and observation much more useful on a day to day basis!

Thank you both very much. Mum's health generally is not great, but she has no major vascular issues that we know of (mild and well-controlled HBP). Her main health problems are fairly severe osteoarthritis (which means she is very sedentary) and digestive issues (most likely IBS). She's struggled with insomnia for about four years, which causes her lots of distress. She has a history of anxiety at certain points in her life (she had severe PND many years ago, but has also had little periods of anxiety at various times).

Looking back now, I think her memory has been declining slowly for many years, but it was about two years ago that we really started to notice it. Over that time (and particularly in the last one year) she's been increasingly apathetic, socially withdrawn, irritable and anxious. It's very interesting about the link between hearing loss and dementia, as she's always had excellent hearing but it's declined noticeably in the last year. She's started to lose words and also skills (I don't think she really cooks at all any more). I think her cognitive decline has been more severe than we realised and has largely been unintentionally masked by my dad.

@Tessisme did your mum get an actual diagnosis of dementia or just of 'decline'? Do they only prescribe meds if they definitively diagnose dementia and identify what type? Although mum would find a diagnosis hard to accept, it might make it easier to persuade her to take meds, rather than a vaguer diagnosis of decline. She's already been given various medicines for her insomnia and her anxiety/depression, but she's quite erratic about taking them. Not because she forgets, but because she'll randomly decide that she doesn't want to, or that they don't work, or that they're responsible for her stomach issues etc.

My mum got a diagnosis of dementia @tobyj, assuming Alzheimer's until a CT scan could be done to rule out vascular dementia. The scan showed an 'event' of some kind at an undetermined time, but because she hadn't displayed a sudden onset of symptoms, the Alzheimer's diagnosis stood. Just to say, my mum displayed signs of dementia for several years before I managed to get her to agree to an assessment. By the time she had the assessment, she had no idea why the nice lady was giving her puzzles to do! Mum was prescribed Donepezil immediately (so before the scan) but I don't know what the criteria are for prescription. I always understood that the earlier medication was started, the more effective it was, but I don't know if an actual diagnosis of dementia is required. Mum understood that the tablets were to 'help with her memory'. There was no point in distressing her with the 'Alzheimer's' word as, to be honest, she would have forgotten it very quickly anyway.

I hope you get some answers soon. And do get every bit of help you can. It's a tough old journey

Thanks @Tessisme . It hadn't occurred to me that they might give her a prescription while still continuing to assess her, but that makes sense. I guess we'll see - they did say she'd hear something within two weeks. Looking back, she's declined so much, but you kind of don't notice the change day to day. I've spoken to her three times since the appointment last week, and we've had exactly the same conversation each time. Today, she wasn't even sure whether she'd already mentioned the appointment to me or not. Dad's been very patient generally, but I could really hear the frustration in his voice this evening.

Well, DM heard back from the memory clinic today and they've given her a diagnosis of MCI. She's very pleased it's not dementia, but to be honest I'm surprised - when we saw her at the weekend she really wasn't great. She's losing a word every sentence or two, repeating things all the time, and getting confused over odd things (like laying the right combination of plates and cutlery to serve a slice of cake). She's not really able to cook any more, and she gets very confused about medical appointments etc. She's stopped socialising because she's worried about forgetting what to do and say. The NHS website says that the definition of MCI is cognitive decline that doesn't have a significant impact on your daily activities, whereas I think the impact on DM's life is very significant. Plus of course she only got 9 on the MOCA.

Anyway, we are where we are. Mum's only had a diagnosis phone call so far, so hopefully she'll get a letter too. They haven't mentioned any further tests, but says they're inviting her to a 'Healthy Minds' clinic, primarily to help with her insomnia. The advice I've read online is that the key things you should do to stop MCI developing into dementia are exercise, socialising and puzzles etc. Unfortunately, she can hardly walk due to arthritis, she's become totally withdrawn and mostly refuses to socialise, and she's stopped doing crosswords and playing games (which she used to love) because she can't remember how they wotk. We're going to have to try really hard to get get her to engage in some of these things.