Page 2 | Waiting for dementia diagnosis- what to expect?

Limehawkmoth · 02/06/2025 08:34

NetZeroZealot · 02/06/2025 07:34

I’ve got financial LPA - this can be invoked at any time. My understanding is that it’s health LPA that can only be invoked when the donor loses capacity.

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so this is different to LPOA. We don’t know which the OP had

Petrie999 · 02/06/2025 08:50

My mother was diagnosed with alzheimers after a memory clinic assessment and scan. They weren't sure whether it was just mild cognitive decline but settled on a diagnosis of dementia. She has been given medication to help slow the progress (she's 70) and has received a lot of information about support groups etc. She goes to a weekly group at the memory clinic and they provided some aids at some. She is coping ok at home but lives alone and we help with things like shopping and tech. She has a cleaner and gave up driving. She put POA in place prior to diagnosis and we haven't had need to use it yet. For now very little has changed but that's appropriate to her needs.

luckylavender · 02/06/2025 10:56

NetZeroZealot · 01/06/2025 08:04

DM (85) has had memory clinic appointment (not clear exactly how it went, she said she only got one question wrong) and had CT brain scan last week.
2 weeks to get results.
She is competent but her memory has deteriorated dramatically.
what will happen if the scan confirms dementia?
She is carer for DF (89) who is very frail.
They have cleaner & gardener who have worked for them for years but won’t accept any extra help, I have been trying to persuade them for months.
If the diagnosis is confirmed does that kick off a process of getting help in?
DF gets attendance allowance, they have funds to pay for extra help and I have POA.
Thanks.

This probably won’t help but when my mother was diagnosed there was no help at all. No medication, no advice, nothing. And that continued until she died.

Original poster

NetZeroZealot · 17/06/2025 06:34

Thanks everyone who posted. The scan results have come back with no abnormality other than age related blood vessel changes and a suggestion from the GP for another visit to the memory clinic.
So I’m feeling rather flummoxed at the moment about what to do as everyone else in the family can clearly see there is a problem.
I can also see from several posts that this is not unusual either, which is also helpful.

OP posts:

Original poster

NetZeroZealot · 17/06/2025 06:45

asknotwhat · 01/06/2025 16:58

I thought the same, and was very surprised. I assume that DM would get a diagnosis now if she was reassessed - but I'm still not sure. There seems such a big differential on this. For example, Wendy Mitchell (her books are great) was diagnosed with dementia while she was still driving, doing a professional job and living completely independently. There is absolutely no way my DM could have done any of those things two years ago when she was assessed - she couldn't even cook a meal any more - yet she was given a diagnosis of MCI (which, if you look it up, is defined as cognitive changes beyond what's normal for your age, but not enough to significantly impact your life). That makes no sense to me.

I wonder if it the lack of diagnosis was partly because she said she still read a lot (she does to an extent, or appears to, but she couldn't actually tell you about anything she's reading), and that my dad is still in very good shape, so as a couple they were 'managing' fine (because he does everything). As well as the very obvious repetition of questions and strories, it's sometimes more subtle things that reveal the extent of her decline - like trying to play a simple board game or draw a picture, and realising that she simply has no concept of how to do those things any more (the picture thing is striking, as she used to be an artist - it's not just that she now finds it hard to draw something, it's more that she's lost the whole concept of how to use drawing as a way of representing something visually).

She's now also extremely anxious, often cross, and very depressed. She'll hardly talk on the phone any more, because she finds it difficult, so it's getting harder and harder to engage with her. Her life has shrunk from basically fine to a very small and miserable existence in the space of five years. She's only late 70s. I'm sorry OP, it's horrible, and I'm sending you all best wishes.

Thank you. I feel like this is where we are at now. Mum still does Wordle every day and can produce a Sunday lunch for guests but struggles with most of the day to day stuff, but won’t accept that they need extra help.
She is afraid of change.

OP posts:

rickyrickygrimes · 17/06/2025 06:47

it probably depends to how they react to your mother being diagnosed - if she is. IME there isn’t any prof who’s going to push them to accept more care unless they ask for it. My MIL was diagnosed with Parkinson’s and LBD - FILs reaction was initially denial, then outrage / offence when the consultant suggested that he / they might benefit from seeking out externally provided care at home.

there are many services out there - all of them need to be proactively engaged with. Specialist charities, lunch clubs, caring services, adaptations made to the home, nurses etc - none of them will actively try to convince or persuade your parents to engage with them.

CaptainFuture · 17/06/2025 06:51

@NetZeroZealot just been reading through thread and see you have financial poa? Not welfare? Sorry if this is wrong.
If welfare not in place and she still has capacity, def get this organised as can make such a difference if she goes into hospital and needs a Care home.

bluecurtains14 · 17/06/2025 06:53

Dementia is largely a clinical diagnosis, the scan might support a diagnosis of vascular dementia but is largely to rule out other things.

rickyrickygrimes · 17/06/2025 06:54

Just saw your update of no diagnosis.

what do you feel they need help with? The basics are: eating, drinking, taking medication, getting dressed / undressed, toileting, washing etc. Are they struggling with any of these? These questions would form the basis of any care assessment.

What about mobility? can they get around the house? you say your DF is very frail - is that in terms of mobility? Have they got many adaptations at home?

You say that you’ve stepped in to help in crises - what are these crises? Are they health or administrative or accidents?

While a diagnosis of dementia is better to have in some ways, there is a lot that can be out in place without it - if your parents are willing.

BooneyBeautiful · 17/06/2025 07:04

NetZeroZealot · 01/06/2025 08:55

I have financial POA and they are not short of money.
I think their reaction would be ‘we are coping fine at the moment so we don’t need help and will get it when we do.’
They aren’t though.
I was hoping that a dementia diagnosis might prompt more intervention from the NHS. They are more likely to listen to them than their children.
Bit it sounds as if we still have to be proactive?

Is it possible for you to get a health and welfare POA prior to a probable formal diagnosis? That would be helpful to get in addition to the property and finance POA that you already have.

BooneyBeautiful · 17/06/2025 07:12

Limehawkmoth · 01/06/2025 22:17

A scan can confirm dementia, if there is evidence of platelets ( alzeimers), Lewy bodies ( Lewy body dementia ) and some other types of dementia that can show physical neurological damage

BUT, seeing no evidence is not a definitive diagnosis that someone doesn’t have that dementia. Just there is no evidence visible on the scan, but person may still have a form of dementia

They need to rule out a number of other things as well, but I assume they’ve done his? They must rule out delerium , even low level infections like UTIs not completely clearing up. ( imhe we only knew this due to increased incontinence that thy covered up). They should also be asking about sleep - chronic sleep deprivation can cause memory issues- and that’s not uncommon with age. And then there’s depression- being carer for her husband for years can be isolating and limiting- 50% of people who care for someone long term get mental health issues . So a lot of stuff to also look at ….and for family to ensure they talk with parent carefully, to see if any evidence of these things.

memory clinic may indicate clearly she has memory/cognative issues- but the causes can be many…it’s not just dementia that causes cognative issues.

my dad had LBD. He had scan 18 months before he died..all came back as “ normal”. Even though he was showing pretty classic LBD symptoms, they still only were able to say “ mixed dementia” even on his death certificate. It took 10 months to get even that “probably dementia” assessment- even though he was by then under a mental health section in mental hospital, and DOL.

but it is worth pushing for them to confirm if they think it’s, on balance, dementia, by eliminating other stuff. Dad was given one of newer drugs that was like an “ awakening” for him. Gave him 3 months of more lucidity, calmness etc so he could be transferred to a nicer care home for a while. These drugs are in very early stages of use, but can make a difference in terms of keeping someone at home a little longer., or in care but with more stability and less distress.

sorry, but others are right. It’s not a black or white result with scans. You’re more likely to be dealing with vagueness and “ probablys”.

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Good point. Also, a lack of Vitamin B12 can manifest as dementia-like symptoms. This happened to DP's brother-in-law some years ago.

PermanentTemporary · 17/06/2025 07:45

My only suggestion is to go to the Memory Clinic appointment with her even if you have to gatecrash.

StormySea23 · 17/06/2025 07:52

Based on my dad's experience of a rapid decline (now in a nursing home) it is very hard to be taken seriously if you don't have any low level care already in place when the crisis hits. The NHS seemed to take the view that if they hadn't needed care (my mum is an ex nurse who is very fit and well) then it couldn't be that bad

So if you can try to get a PA or companion carers set up it's worth it, if only because it's a professional pair of eyes on the situation.

Speak to Admiral nurses via Dementia UK, their helpline is brilliant and they give great advice for navigating these situations. Best of luck.

wobblybrain · 17/06/2025 08:15

StormySea23 · 17/06/2025 07:52

Based on my dad's experience of a rapid decline (now in a nursing home) it is very hard to be taken seriously if you don't have any low level care already in place when the crisis hits. The NHS seemed to take the view that if they hadn't needed care (my mum is an ex nurse who is very fit and well) then it couldn't be that bad

So if you can try to get a PA or companion carers set up it's worth it, if only because it's a professional pair of eyes on the situation.

Speak to Admiral nurses via Dementia UK, their helpline is brilliant and they give great advice for navigating these situations. Best of luck.

I agree with this, it was constantly trotted out about how mine was ‘coping alone’ prior to crisis when actually she wants coping alone at all, but becsue I was doing it all rather then having paid carers/help it wasn’t deemed worthy of listening to and it really did provide a hurdle.