Waiting for dementia diagnosis- what to expect?

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.

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.

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

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.

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.

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.

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

@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.

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.

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.

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.

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

Correct and too often the bar is so low it's in a trench.

How this works depends on whether she has older enduring or newer lasting POAs

fact she only has financial one smacks of older one.

To act on POA needs a health professional to declare she is mentally incapacitated.

only exception is if she has specified certain things she gives consent to whilst still mentally capable, can attorney act. And only then to do the exact tasks stated in doc and nothing more. Stuff like managing bill payment and banking on line which some older people don’t want to do. But that’s with the persons oversight and instructions to attorney. Because they still do have mental capacity.

just cos there aPOA, it doesn’t mean you can waltz in and take control of someone’s decision making and affairs. That’s illegal. The process must be followed to formally and legally declare the person mentally incapacitated

itsall about safe guarding. The starting point with any assessment is to assume the person is able to make their on decisions and action UNLESS there is clear evidence to professionals to indicate otherwise.

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”.

Is this the older enduring POA then? Not the new LPOA?

@NetZeroZealotI am in a similar situation, living an hour away, only DC . DPs were managing just about ok until about 2 months ago now when DM had a fall and is now more or less bedridden. Thank goodness we live in Scotland as she now has four carers a day and they both grudgingly agreed I could get them a cleaner. Unfortunately it’s becoming apparent that DFs memory is not great, but my email suggesting more paid care went down like a lead balloon, so I just try to keep an eye on things and try to rotate visits with DH and DS19 who will take his DGF out for lunch.

Its hugely depressing as I can only see things getting worse, not better. I am mid 50s and on a short term contract where I have negotiated one afternoon per week so I can go up then, but I can’t imagine having the energy to apply for a new full time job, part time jobs in short supply, and I don’t want to be forced to retire to do care.

I got some helpful leaflets about memory loss from Age Concern I think it was.

As they have a cleaner already, could you ask them if they could come more frequently and do things like checking for out of date food and doing the laundry? Your DPs are used to the person so it’s an easier sell.

Can you persuade them to get Health PoA. I convinced my mother by telling her it will assist in making decisions for her future . I said that she probably didn’t want to rely on outsiders to make decisions for her. I would print of the form and show her where she can state her wishes.

It makes very little difference if she gets a diagnosis or not though OP. A diagnose will not really change anything. You have to go by behaviours, and what she needs, rather than what the memory clinic diagnose.

My grandmother was never diagnosed because she refused to see a doctor but it was very obvious that she had worsening dementia, and in order for her basic needs to be met she had to have carers in whether she liked it or not.

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.