Waiting for dementia diagnosis- what to expect?

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

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'.

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.

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.

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.

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.

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?

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.

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.

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.

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.