Any good advice around dementia diagnosis conversation/process?

[tobyj]

My DM is currently waiting on the results of an MRI following a neurologist appointment due to concerns about memory loss. I think the likelihood is that she's going to be given a dementia diagnosis. Of course I'd be absolutely delighted to be wrong, but I'm trying to mentally prepare myself for the conversation afterwards if it does turn out to be dementia.

I realise that a lot of what I can do is simply to be a listening and sympathetic ear rather than trying to provide any answers or put a positive spin on it, but does anyone have any experience of helpful things to say, or things that made the diagnosis process any better? It all just seems so bleak. Her life has already shrunk massively (combination of anxiety, social withdrawal, limited mobility and a couple of other health problem), so although I can tell her that she's still the same person she was before the diagnosis, that doesn't help much, as she's pretty sad already these days.

I'm also aware that some conversations eventually need to be had around future plans, such as care options and possible advance wishes/DNR, though not immediately. LPA is already done. Is there anything else practical that's better to be done sooner rather than waiting a while? Eg she's no longer driving but she does still have a licence - do DVLA still need to be informed, or should she surrender her licence??

I hope this all turns out to be academic, but I fear it won't.

@tobyj hang onto licence as long as she’s not driving, it can be useful ID.

I hope other posters will be along with advice.

Somehow DF has ‘passed’ his tests so no diagnosis and frankly this is a different type of nightmare because he blatantly doesn’t have the insight to make decisions in his best interests.

Following. In exactly the same situation with my DM. Seems so bloody unfair, she’s only late 60s and such a vital, lovely person.

Can only say what happened with DM. She was told by her GP that she had Alzheimer’s, and apparently accepted it, but had completely forgotten by the time she got home maybe 15 minutes later.

If we tried to remind her, she’d just get angry and hotly deny it, so we soon stopped - her short term memory was by then not far off zero anyway. If we had to say anything, it was on the lines of, ‘Well, we all get a bit forgetful when we’re getting on a bit.’

I do recommend the ‘love lies’ strategy - as advised by the Alz. Soc. Talking Point forum. What with first FiL then Dm having dementia, I was a regular there for years.
Basically, there’s absolutely no point on insisting on any truth that’s only going to distress the person, or make them angry, when they’re going to forget whatever you said so soon anyway. Say whatever sounds plausible and will keep them happy - or as happy as they’re ever going to be.

E.g., perhaps an extreme case, but at one point, when we were still fairly new to it all, FiL suddenly started asking where MiL (dead some 10 years) was. At first we explained as gently as possible that she died some time ago, but he’d get very upset and cry - only to forget and ask again 20 minutes later.

So we started saying she’d just gone to the shops, or to visit Auntie So and So. And that would keep him happy for the moment.

I soon learned to ignore pious types (typically with zero experience of dementia) who told me it was always wrong to lie to anybody, regardless of their circs.

Thanks all.

@FiniteSagacity i couldn't work out from Google whether she'd still have to legally tell DVLA about a diagnosis, or if that's only if she's still driving. Do you know? Easiest thing would be for her to surrender her licence, but you make a good point about ID.

I'm sorry about your DF. Our experience with DM has been a real insight into the state of the NHS. Referred to memory clinic by GP nearly two years ago - appointment took 8 months to come through. Memory clinic assessment diagnosed MCI, in spite of DM doing really badly on the tests, and no scan. Clinic said she'd be referred to a 'living well' memory support service, but that never happened. A year later, there's been no suggestion of a check up on her progress. She spoke to the GP again, who made a neurologist referral (mainly actually for a different but possibly related concern) - this time, appointment wait time was going to be 9 months. She went private instead - saw a consultant neurologist within 3 weeks and had an MRI the day after the appointment.

@GETTINGLIKEMYMOTHER thanks for the advice. Later on I can imagine it being very relevant, but at this stage I'm fairly sure that DM will still understand and remember if she's given a diagnosis. In fact, one of the hardest things at the moment is her insight into her memory loss and other limitations. She's told me several times now that she'd just rather be dead, as there's nothing left to enjoy. She's only late 70s - it's very sad.

My Mum stopped driving long before she died as she was nolonger capable due to disability. She just stopped driving rather than surrending her license. I suspect many people do similar.

When my late Mum got diagnosed with dementia, I found you are more or less on your own. She was given Donzepil which calms them down for a period of time. I read Sally Magnusson book which documented her Mothers journey - it is quite hard reading but does give you a view of the stages of the illness. Also as mentioned Alzheimars Forum - Talking Point is a useful resource. Wish you well as this disease has a very big impact on families.

@tobyj thanks for sharing your story, I doubt DF would ‘comply’ with a private appointment because he’s pretty cross right now but good to know about the waits you’ve had and direction we could go in.

We did the 1 page form for DF to surrender his licence but that was because the NHS had reported to the DVLA that DF shouldn’t drive any more (the nurses had treated DF for years and told him very gently). The ID consideration was a lesson learned but we’ve managed okay.

But we only surrendered because we had to and if your DM isn’t going to drive I wouldn’t rush.

I'm sorry to hear about your mum, OP.

My mother was diagnosed with Alzheimers 10 years ago. The scan is mainly to exclude other diagnoses like a brain tumour. Once you get a diagnosis of dementia, little will change because unfortunately there is little support available.

One of the things I had to come to terms with was that I could not make my mother happy, or make things better. All I could do was ensure she was well cared for and safe. Fortunately she was able to self fund care so we did not have to rely on Social Services - that makes a huge difference.

I don't know if your mother has expressed preferences about care, but most people will say they want to stay at home. The often isn't possible, so I would avoid making promises you may have to break later on. My mother has now been in a care home for several years, there came a point when she needed care 24/7. Despite wanting to stay at home, she has loved being in the care home and it was absolutely the best decision.

I thought I'd come back to update this thread - but with very little update. DM's MRI scan apparently didn't show anything 'of concern'. So we're now back to where we are - that is, a diagnosis of MCI from a year ago, and no suggestion of any ongoing support or reassessment.

Meanwhile, DM's cognition continues to get worse and worse. I spent the day with her this week, and she was very repetitive in conversation, along with losing words frequently and doing a couple of quite odd things. The thing that really worried me, was that we had a long conversation about an old photograph, and she was totally convinced that it showed her as a child with her twin brother and older brother - even though IRL she's only got one younger brother. It's actually a photo of her own mother as a child, with her twin and older brother. This wasn't a momentary mistake - we talked for about 15 minutes, and she simply would not accept that her uncle wasn't in fact her twin brother. I had to change the subject in the end, because she was getting stressed and belligerent about it, but she didn't want to let it go.

I just feel like this level of confusion must surely be more than mild cognitive impairment, but nobody seems remotely interested in reassssing DM. Then I think, what does it matter whether it's actually dementia or not. But everyone does seem to say it's better to know, for forward planing if nothing else.

Anyway, on we go. Meanwhile, a big thanks to the PP who recommended Sally Magnusson's book, which I've just read and was wonderful.

I'm so sorry you've both been left in limbo.

I think for now just focus on the practicalities and any vulnerabilities. It is true that the diagnosis itself doesn't change these.

Has she been tested for a UTI?

Not specifically recently, but the cognitive decline has been progressing steadily over at least 3 years, and she's had multiple health tests within that time (because of various ailments). I could be wrong of course, but this seems like a gradually worsening picture rather than acute confusion.

The symptoms you describe are not MCI. I would say they are similar to my mother's behaviour when she had been diagnosed with moderate dementia. Soon after that she was in a care home.

It is frustrating you have not got a correct diagnosis but it doesn't really matter, as has been said previously it wouldn't unlock any more support or help. I would plan 'as if' she already has the diagnosis.

Hey there,
Dementia and cognitive decline is horrible to see in family and friends, and it can help to understand what is happening in the brain. I recommend watching tis video if you want to know more.

"Keto and MCT for Alzheimer's, One Doctor's Family Journey"

Best of luck to you and our family.