Should Mum be assessed for early dementia? Not causing problems yet.

[DinahCat]

Apologies in advance for long post, trying to give the full picture.

Mum is in her 90s and has been getting a bit more forgetful in the last few years but was functioning fine and lived independently. Then last summer she passed out, fell and suffered a nasty fracture. She also hit her head and may or may not have had a brief concussion. Head was MRI'd and no stroke, but some 'white patches' suggesting previous mini infarcts.

She was in hospital for several weeks and though never got as far as 'delirium' was definitely very weak and seemed to be declining generally. Came home , carers arranged (2 visits per day, they are really good and reliable) and seems to have picked up in strength and alertness.

However. We have noticed she is
a) forgetful in that we tell her something (that she wants to know) and it goes out of her head, she needs to be told again
and b) she seems to be confused about the timeline of the past year, what happened before and since she was in hospital, and sometimes seems to forget that the things she can't do now are since her fall, and because of her fall, and for example thinks she has been doing things she can't do any more, in recent months.

She is quite tired and sleepy a fair bit of the time and sometimes I think she just can't be bothered to think/remember about things, because now with carers and close involvement by her two adult children (we have activated £ PoA etc) she doesn't have to, and she does seem to enjoy being looked after.

She's not gaga, she still does her online shopping (but not as well as she used to, and often forgets to look at the shopping list the carer writes out for her). She makes her own phone calls to arrange appointments still.

But she has definitely lost flexibility of mind, and as above, is now quite vague and forgetful. But I don't know if this is a disease process or just natural ageing at this point. And I don't know at what point there would be anything to be gained from assessment/investigation/diagnosis.

I am loath to suggest yet more investigations unless there was a clear benefit. She had to have her heart assessed after her fall, and she is in the process of a skin cancer diagnosis/treatment, and each visit to a doctor/hospital is a major palaver - for her, and I'll be honest, for us as well (she is 3 hours away from me so it involves a couple of days at least out of my life to take her when its my 'turn'.

Clearly if she was not safe at home it would be a different matter, but day-to-day she manages fine. She has a set routine (has had for years really, there's just less variety now) , well aware of what time things should happen. She is aware she is getting forgetful, and keeps everything written in a diary to know eg when the gardener is coming etc - she has always done this but she knows she is more reliant on things being written down.

So very interested to hear other people's experiences with cognitive decline and pursuing an assessment, in very late life.

This sounds a bit like DF until recently when he suddenly declined quite significantly.

As long as you’re happy with the level of support you’re providing, then I agree there’s not a huge point in pushing for a diagnosis right now. I would make sure she is hydrated and getting adequate nutrition as you want to avoid her getting UTIs which can cause delirium.

If it gets to the stage where she’s falling over more frequently or it feels like the frequency of visits needs to be upped, then I would flag it with her doctors. There is a waiting list for the memory assessment in our area and DF thankfully agreed to go into a care home before it came through as regardless of the results he was at the stage where it wasn’t appropriate to remain at home as he was falling frequently, not eating properly and not taking care of himself and wouldn’t let the carers do the cooking.

Firstly, take a look at the Alzheimer’s Association pages for patient assessment. The GP will use a standard one & you can do much / all of that at home; it can either be carried out on the patient or by their rep, “the informant”.
You may decide that it isn’t worth progressing.
Are you her medical proxy at the GP? If you do want to progress it for her, you could request a dementia nurse visit to home, to assess her condition & also her house for adaptations etc. This was useful for my DM, we linked it to her falls.
Please continue to be kind & gentle with her. It seems that this is the best route for us at the moment, though we are sometimes more assertive if necessary.
My DM (85) has had dementia for 4 years, she will not accept that she has it & is actually horrifiedby the idea (just her pride) so we don’t discuss it with her.
She has treatment via daily drug patches & believes they are to help prevent her from falls, which in a way they are as they slow the progression of her diseases (she has vascular & Alzheimer’s). She uses a rollator in her bungalow, a zimmer at our house, and only a stick outside - again, a pride thing. I fear that she will fall (again) out of the house & will injure herself seriously, however I can’t wrap her in cotton wool or be her minder all the time!
She lives with DF (who has discovered patience, very late in life!) and refuses all carers (pride!) despite having a very clear need for them.
Best wishes, OP

I am not sure a dementia diagnosis would be of much practical use. Your mother is in her nineties, has suffered significant cognitive decline and clearly needs (and would welcome) considerably more care than two visiting carers per day.

You don’t say if she has other people close by - friends, a social life, etc but remember that she will be less and less able to engage with and enjoy everyday pleasures - radio / TV / newspapers / books / conversation - so she really needs people around her who know her well and for whom she is a priority.

Thanks all, much appreciated.

@rookiemere I was worried about this in hospital, but now home she eats reasonably well and I think is generally very well hydrated - has a cup of water beside her and also loves her cups of tea (which she makes for herself between the morning and evening carer, and they generally tell us they have made her two cups). Certainly emptying her commode in the morning would suggest ample hydration :)

@CleanSkin I will look for that test , might try running through it as if I was her!

@TheFarriersDaughter One of the reasons I do not feel there is urgency is that she is still very much enjoying tv, phone chats with friends (albeit she has fewer now as so many have sadly passed) reading detective novels etc. I do understand though that this may change. She really likes her carers who are chatty and kind - she has a total of 3-4 hours per day and there are only two main ones so they know her well.

If you are suggesting that we should provide more hands on care, we are both still working, and both live too far away to drop in regularly. So that is not an option. We phone every day though, and communicate continuously with the carers too.

I would keep up this good work, increasing the carers hours as soon as needed. Maybe see whether there's an option of carers accompanying her on some of the hospital visits too as they are a big deal for you, and just visit her socially.

Be assured, @DinahCat, I know just how difficult it can be if you’re far away, so appreciate neither of her offspring might be able to offer more time. But even with the very luxurious 3-4 hours a day of carers she must be spending a good deal of time alone. I would worry about the risk of further injury, and not being discovered quickly.

Do you really feel it’s necessary to wait until things get worse before encouraging some change? It sounds as if there are sufficient finances to enable additional care, no doubt preferably in her own home?

(It can take a while to grasp that what looks like ‘can’t be bothered to think’ is actually ‘no longer has the capacity to think’ in various situations. It’s very hard to accept.)

My 90s parent is similar to yours OP
It has been suggested that we should seek a dementia diagnosis but I really can’t see what we would gain. And i know they would be distressed if they were told they had dementia.
It’s hard!!

Thanks @Anewerforest and @TheFarriersDaughter - We are pretty sure her fall was caused by either a cardiac issue (arrhythmia) or more likely, low blood pressure. They found her BP was low in hospital and took her off the BP meds and it has stayed at an an acceptable level. So common to overprescribe BP meds to people who metabolise them slower and slower as they age. Exactly the same happened to my uncle, and he broke his hip as a result of his faint :(

So we do feel she is safe at present (BP good, no arrythmia found with holter monitor) and that she has enough capacity to know she wants to go on paying for her choice of carer for as long as she can. Upping the hours would mean her money would run out in less than a year, which she does not want.

@CleanSkin thinking more about your post, I wondered if one advantage of a very early diagnosis while she still has a fair bit of insight (and she does) would mean she was more accepting of her diagnosis. Or maybe she would stop using her brain even more? (saying that, she does still like doing the 1% quiz and does OK, I can usually get a question or two that she can't , but no more than that!

Anyhow I fell that the time will probably come, but lets get the skin cancer out of they way first at least...

Once again, most grateful to everyone.

Do you have PoA for health and money in place?

Get this done asap if it's not already in place.

Your mum will need an assessment by a doctor as part of the process

@mathanxiety yes, we do. Already using the money one.

I don’t think many people’s lives are perfect in their 90s @TheFarriersDaughter. With my DPs I went for a policy of only changing things when it was needed, as what seemed less than perfect to my eyes was a situation they were contented with. OPs DM may not want or feels she needs constant companionship at this point, 3-4 hrs per day of carers is a good amount. Personally I would save the extra cost until it’s needed for care home fees, if indeed it is.

OP, recently went through this with my Mum. Very similar symptoms albeit she's a bit younger - just turned 87. She underwent a battery of tests & a brain scan which took the best part of a year & was recently diagnosed with mild mixed dementia - Alzheimers & Dementia. She has sort of accepted it - was talking about her 'memory problems' for a long time, but still sometimes gets confused about it.

She is still able to do many of the things she has always enjoyed including reading (classic literature), online shopping, browsing Instagram (!), communicating with family on WhatsApp, & does Wordle most days.

The doctor has put her on medication which will slow the advance of the disease, and the diagnosis means she can get Attendance Allowance, a disabled blue badge for parking, and a discount on council tax - all of which helps with the financial side of things.

We had already activated the finance LPA but as soon as it was clear Mum's memory was deteriorating I also applied for health & welfare. Of course some of this you can do without a diagnosis.

She lives with my very frail even older Dad & they are lucky to have funds which will stretch to full time care (I live some distance away), although that hasn't been as good as I was hoping/expecting - but that's another story.

I hope my experience is helpful.

Thank you so much @NetZeroZealot - that was something I was wondering about, the possibility of medication and whether someone needs a specific diagnosis to determine if it would be helpful (and how onerous that process is, mum is physically fairly frail, and the thought of her having to have a brain scan etc is a bit daunting). My guess is that they might help with an identifiable Alzheimers case but perhaps not so much with just general cognitive decline - but maybe no-one knows!

Mum already receives the higher rate of attendance allowance and has a blue badge - not sure about council tax though, we'll look into that.

She has plenty of capacity at the moment (see above for eg that she is making the decisions about what to spend on care, albeit we are sorting the online side of actually paying). So maybe we could just ask her if she was interested in having tests to see if she would benefit from memory drugs? It does change the equation a bit, doesn't it? Without that option I do feel she would have little to gain.

(your Mum sounds very similar to mine in her ways of spending time! Mine loves a crossword 😃)

Can I ask who initiated the investigation process? And million dollar question - have you any idea if the drugs are helping stabilise her?

Thanks for your thoughtful response 🙏

@DinahCat My Dad noticed that Mum was repeating herself a lot about the same time as I did, and she forgot her son's middle name when filling in a form. So I gently suggested she go to the GP 'because of her memory problems as there are drugs that can help.'

The brain scan was actually very straightforward - it was a CT scan done at the local hospital & very quick & efficient. The GP also did a blood test, I think to rule out other (physical) causes.

None of us mentioned dementia or Alzheimers until we were quite far down the road with the memory function tests and it was clear that not all was well.

Mum still definitely has capacity and her behaviour is quite rational, but just very forgetful. e.g. before we got carers in she would sometimes repeat her online grocery order two days later. Once she went to the GP's for an appointment & couldn't remember why she was there. I had tipped them off beforehand but the stupid GP hadn't read the note on the file.

It's a bit early days to assess the effects of the meds. She has been on the drugs for about a month and at some times she does seem to have improved quite a bit ... then at others it feels like we are back to square one. The dementia nurse says that variation is quite normal. The consultant who prescribed the drugs said about 30% of patients will see an actual improvement in their cognitive ability, but also that the meds would slow down the rate of decline.

You could try asking the GP to prescribe the drugs without going through the memory assessment process - I am aware of others who have successfully done that.

I agree with others that there isn't much advantage to be had from a diagnosis, unless it would mean some extra funding for carers? Does she get attendance allowance? If not then a diagnosis may help getting that benefit. But due to her age would meds help at all, I don't honestly know? My MIL has it but she is only 76, it has affected her personality and she is very aggressive so has social services involvement due to her behaviour. She does not have mental capacity but has carers 4 times a day which is heavily funded for only costs her about £70 a month. It doesn't sound like anything like that is happening in your case. Others have mentioned a dementia nurse (also called an Admiral nurse), we have one for my mother in law and we can honestly say she has done sod all. But I'm sure there will be good ones out there.

Thanks again @NetZeroZealot and thanks @toomanydicksonthedancefloor1 . She's already receiving attendance allowance. I think I need to do a bit of research around whonthe drugs are useful for, to see if this is likely to be worth chasing in my Mum's case or not. Really appreciate hearing everyone's experiences 😊

In my experience with MIL, the benefits to an official diagnosis were only financial. It allowed us to claim Attendance Allowance and a full exemption from paying Council Tax.

It might also make it less difficult to seek help from Social Work if/when the time comes (don't hold your breath on that one though as we got zero help).

There is no medication for dementia apart from Alzheimer's but even that doesn't really make much difference so not worth troubling her with appointments - obviously that is just my opinion.

TBH my DM was told by her GP that she had dementia, but had completely forgotten by the time she got home about 15 minutes later. She just got very cross if we ever tried to remind her, so we soon stopped. No point.

OTOH a diagnosis can help with e.g. a claim for Attendance Allowance, and I know of a case where an official diagnosis would have meant that the so-called carer who married an elderly dementia sufferer (without the family’s knowledge) and then got him to change his will entirely in her favour (and it was a substantial estate) would have been a lot less likely to get away with it, after the family took the matter to court.

Thanks @KeeleyJ. And @GETTINGLIKEMYMOTHER what an awful story!!

It occurs to me that as Mum is still in the stage of having insight into her poor memory, hopefully we can gently reinforce that idea so if it were to become more of a problem/ accommodations need to be made that she might not like, she might be a little more accepting. If we tell her something often enough the idea seems to stick even though she often seems to have little idea who told her (ie she seems to think she worked it out for herself, which is fine so long as noone tells her anything unhelpful!)

Wow @GETTINGLIKEMYMOTHER how awful for the family.

As for attendance allowance and a blue badge. I got both of those with no problem without the Dementia diagnosis.
I also have POA for health and finances but haven’t activated either yet.