Waiting for dementia diagnosis- what to expect?

[NetZeroZealot]

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.

A lot of it will depend on their financial situation and how well they’re coping at the moment. If it is dementia, the results will likely tell you what kind it is and whether there is medication available.

You can get in touch with the Adult Services team at your local council and ask for a needs assessment. This can be done now (given their age) or afterwards - up to you. The Adult team will go through financials (to see if they qualify for anything) and can suggest practical things around the house like grab rails, raised toilets (if mobility is an issue).

It’s good that you have POA (is it health and finances?). You’re ahead of the curve so that’s a good start.

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?

Mil was diagnosed last year. We booked an appointment with the gp where we went with her and fil so we could all ask questions and hear what Dr said first hand.
We were told to focus on what she needs help with and practical things we can put in place. For us none of that involves carers at the moment. Between them (fil has physical illness but still very sharp) they are managing pretty well for now. However they are proud people and don't want to be infantised or fussed over.
Mil was put forward for a medication trial but wasn't selected unfortunately.
Dr told us there is no way of knowing how quickly she will decline so you just have to take things month by month, year by year. She is also in her 80s.

Good idea to book family visit to GP, I think DF is in denial.

I think that yes, you will need to be proactive. There are systems of support but you’ll need to access them (with their consent). If she is given a diagnosis, perhaps you can have a conversation with her around ‘preparing for the future’.

It’s good they have a cleaner and gardener but if money isn’t an issue, you could look at getting extra help in the form of a ‘PA’, these are people who do all kinds of jobs to help people live independently, such as organising meds, doing shopping or other general jobs.

My dad is elderly and has Parkinson’s and while he doesn’t have dementia, he needs a lot of help. He has carers two times a day plus a ‘PA’ for 3 hours a week. She will do odd jobs or help him pay bills etc. I live about an hour away and I see him every weekend. I do everything else, organise shopping, meds, doctors appointments etc. Between us all, we run his house quite efficiently. At least for now.

It took a while for my dad to accept he needed help but once he did, he didn’t look back. He loves his carers now and they brighten his day.

You might like to consider getting health POA too while she is able to consent. I understand that getting it at a point where she can’t consent is a tougher process.

I think it’s good (if you haven’t already done so) decide for yourself what you can and can’t do. All too often people assume responsibility for ageing parents and run themselves into the ground. I knew from the start that I couldn’t ever do my dad’s personal care (he’d be mortified at that too). I’ve certainly got involved in cleaning up loos and floors if he’s had ‘accidents’ etc but in general I stick to doing his life admin and emotional support. I hope you’re able to access the support you all need.

Thank you. How do you find a PA? I agree this will be more acceptable to them.

i live an hour away and have stepped in at the increasingly frequent crises but this int going to be sustainable over the long term. I am also working full time although fortunately self employed which gives me flexibility.

Your situation sounds like mine so it helps to have all the help you can. The Adult Services team at their council should be able to help with a list of PAs. People either work through agencies or independently. We went independent and found a lovely lady who genuinely loves what she does. She’s more flexible too, so is happy to pick up extra hours if my Dad needs to go to a hospital appointment etc.

In my county the main dementia organisation is only available to those with a confirmed diagnosis. Apparently once that kicks in, it's really good. So I hope the clinic will have leaflets and at least a conversation to help you find things like a PA. Some googling is a good idea though.

What kinds of crises are happening?

Sorry for a rather negative post, but I think you need to prepare for the worst but hope for better. I have two experiences to share. One was of FIL bring diagnosed with dementia - it appeared to trigger very little. He was put on medication, which did help a bit, but otherwise it was basically: we recommend doing a DNR, here's a leaflet about a couple of local things (there was a local lunch club which was OK for a while), and that was basically it. They were self-funding, so they organised a bit of private care and eventually some residential respite care and then a permanent care home move. But there was never any sense of an organised state 'system'.

My other experience is of not getting a diagnosis. My DM had a memory clinic assessment two years ago after talking to the GP about worries about her memory. Her score was very bad, but she was only diagnosed with MCI, which I was really surprised by. She's got much worse since then, but there's been no suggestion of any further assessment or follow up, even though I'm totally convinced she has dementia, and even though she's had numerous GP visits for other medical issues in that time, where I can't believe her cognitive issues aren't very obvious to her doctor. She and dad don't push for a memory review because I don't think they want to know the answer. It's a deteriorating and depressing situation, and I'm just waiting for a crisis, tbh. When I was at the stage you're at now, I was bracing myself for a diagnosis and follow up discussions etc - but nothing.

Sorry if this is negative or anxiety inducing but it is my experience....

MIL was officially diagnosed 4 years ago and apart from one extra pill, nothing happened as medically there aren't really any treatment options.

It opened the door to us being able to claim Attendance Allowance and an exemption from Council Tax but support wise, nothing was offered and we had to fight for everything.

We never even got a care package as the local authority had too big a waiting list despite me involving our MP, MSP, local councillors, Fire Service after she set the house on fire and The Police after they found her wandering at 9pm during the worst days of the covid lockdown as she thought it was 9am shopping time. In the end, a carer never walked in her door and she ended up having an accident that put her in hospital for 3 months then straight to a care home.

Just want to mention POA, great that you already have it but if you haven't already, start registering it with organisations such as DWP, banks, Private Pension companies etc as that can be a long process, you can't just randomly arrive at the bank and show them the paperwork to access funds.

I agree with @asknotwhat
A diagnosis will not trigger any help from the NHS, and as your parents can pay for care it will be up to you to source it.

If you google 'at home dementia care' plus their location, you will find a list of care agencies.

I had LPA for my mother and I got her a carer without consulting her. I said a lady was coming in to help her, so my suggestion is to call the carer whatever you like, just don't say carer! Call her a PA, or a cleaner, or whatever will be acceptable to your parents. You could start off gently with twice a week and build up to daily if that would help.

The manager of the agency visited initially to assess their care needs, I was present at that meeting so I could hear her suggestions, and so that my mother couldn't fob her off with "oh I do all my cooking and cleaning!" (she didn't.)

I found it difficult overriding my mother's wishes, but I had to remind myself that she had dementia and did not know what she needed, as I had POA it was my job to deal with her needs rather than her wants.

My experience is that in the early to mid stages it's not so much carers as admin/life support. It's someone to make sure any letters are dealt with and that they are fiddling with the heating controls. Mum does have carers but all they do is check the heating hasn't been turned off and there's no manky food in the fridge.

My mother's carers did all that, I asked them to do everything I would have done if I had been there. So cleaning, meals, housework, calling the landlord if the heating wasn't working, taking her to the optician/hairdresser/hospital. They forwarded all important looking mail to me. After a year or so they also needed to help her dress and make sure she had a bath. It was called 'companion care'.

Honestly, I would consider that’s there won’t be a diagnosis at this stage. Mine was much further down the line than yours sounds and she was diagnosed with cognitive impairment and they said changes in the scan were normal age related changes. I fought every agency for the following 3 years before anyone agreed to do another assessment (she point blank refused to go to her review appointments) and by the time they agreed to assess her again she was already in a care home and had no idea who she was, where she was or even how to put her clothes on. It was horrific. Sorry to put a negative into the mix but a deteriorating memory is seen as ‘normal’ and it’s not until they cant actually function properly that anyone actually listens

That’s really interesting. I’m assuming she’ll get a diagnosis as it’s so obvious to me how much she has deteriorated but it’s good to be prepared for a different outcome.

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.

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.

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.

@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.

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

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”.

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.

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.

Thanks everyone for your advice.
We’ll wait to see if the scan provides a diagnosis or not.
Lots of helpful suggestions here.

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