Memory clinic question

[Ritaskitchen]

DF has been referred to memory clinic. First he needs a CT scan. The hospital he has been referred to for the scan says it is only scanning children at the moment. No appointment date or waiting time given.
GP says DF cannot progress further in memory clinic without a CT scan. So stuck in limbo.
GP will now see DF monthly instead of 6 weekly (DF has depression- medicated)
I have complained- to DFs local MP and to PALS
But can DF get a second opinion somewhere else? I have found an NHS 1 stop shop memory clinic in a town nearby. Can DF ask GP to refer him there?
Thanks for any thoughts

MIL waited several months for a memory assessment and they never progressed to a scan. They diagnosed without. Tbh a diagnosis hasn’t made any difference. A handful of leaflets and off you go. She’s already in care.
Make sure POA, wills etc are all in place. Think practical.

Presumably you asked the GP (they are the referrer, after all) to refer him elsewhere? So what did they say?

Google isn’t helping with this, but I believe under the Right to Choose your dad could be able to opt for a different hospital trust to lead his care.
The Memory Service won’t diagnose without a CT as they need to see what’s happening neurologically and rule out any other potential issues that could be caused his symptoms.
Id approach PALS and the GP re Right to Choose.

I’m going to add to my post, actually;

I don’t think your dad would be able to do the fully memory service pathway in a different area as all resources are usually linked to the person living in that specific place. However, getting a CT scan from a different area that can then be shared with your local memory service could be possible so thar is what I would advocate for.

Call the surgery and see if a scan can be arranged at another centre with better availability. The GP could do the referral. That might take a bit of time, of course, but it's better than having no possibiity of a date.

The CT scan is only a part of their assessment. The memory clinic should be able to do part of their assessment anyway. If they suspect Alzheimer’s they may offer to treat as Alzheimer’s until proven otherwise by a CT scan. If it’s not as clear cut they can still do the memory assessment and then wait for a CT scan for a diagnosis. At least your dad won’t have time wasted like that. I work in this field although not in the UK.

Has the GP done a basic cognitive assessment and does he suspect dementia?

In the meantime just make sure he is looking after his general health and socialising. Also have his hearing checked if not already. Google “12 risk factors for dementia”. Some of those factors are modifiable and by trying to follow them it may slow down any neurodegenerative process.

Sorry I have no advice on whether he can have a second opinion though as not in UK. All the best

Thanks all for the responses. @putitonthewrongwayyes GP did the assessment - and DF didn’t do too great hence the memory clinic referral.
CT scan department told DSis and not Gp about the CT scan delay. So Gp is now going to see DF once a month rather than once every 6 week.
DF has depression but the medication (he’s in Max dose) doesn’t seem to be having any meaningful effect. He is not looking after his health at all. Neglecting self care. He does do some activities but spends a lot of time prone on the sofa or motionless in his chair.
There have been some other issues as well - shouting and ranting, hallucinations and other bits and pieces.
He won’t wear his hearing aid any more - I have tried and failed to persuade him to.
DMum is dealing with a cancer diagnosis and DF has been utterly selfish. Not cared for her at all. it’s all about him on every level. I actually said recently I do kind of hope he has a dementia or cognitive issue eg stroke/brain injury because if he doesn’t he is just a raging narcissist.

So sorry that sounds like such an incredibly difficult situation especially with your mum being unwell as well. I do hope that a memory clinic can see him soon even without the CT, or you are able to get him a CT scan elsewhere. It’s good that the GP is trying to keep a close eye on him.

And you can only do what you can by encouraging him with ways to help himself, I’m sure you are doing your best so don’t put pressure on yourself x

Hi, I very rarely post, but your message really struck a chord with me.
My dad had dementia, and I became very focused on getting a diagnosis. In the lead-up to that diagnosis, he was treated for depression and anxiety, but looking back now, I realise that many of the symptoms we thought were depression were actually the early stages of dementia.
We also struggled to make progress through the memory clinic and eventually paid for a private assessment. During that appointment, the consultant sat me down and said, “Your dad has dementia. He will become very self-focused and inward-looking. That isn’t his personality changing by choice – it’s the disease. You need to be practical about supporting him going forward and make sure social care is in place.”
I think what I’m trying to say is:

1. Thinking and behaving in ways that seem “selfish” can be a very real part of dementia, even when it is completely out of character for the person.
2. I was so focused on getting a diagnosis that I expected things to become clearer afterwards. In reality, I found there was very little support, and I still had to work a lot of it out myself.

Because of that, I would gently encourage you to work on the assumption that this may be dementia and to put as much support in place as you can now. Looking back, I wish I had spent less energy waiting for a diagnosis and for help to arrive, and more energy building support around my dad earlier

I am sending you lots of love and best wishes, OP, because this is such a hard time for you and your family. I am very sorry to hear your mum is unwell too.

Thanks @Dementia2026 sadly they won’t accept any help.
I did set something up. They both said they didn’t want it. So after the second request I stopped it.
DM is talking about moving to a sort of sheltered flat. I think it’s just a threat. I need to find a way to organize a CT scan on another route for DF and progress towards the memory clinic. I don’t live in the Uk and it’s hard to do it from afar.

Can I ask how much a private assessment was?

Oh my goodness OP your situation is like ours was last year except it was MIL denying she had Alzheimer's and FIL dealing with terminal cancer. Her behaviours sounds very similar to your DF, she is a real nasty piece of work, completely and utterly selfish, lacks any motivation to get up out of a chair, made FILs dying months all about her drama and stopped FIL getting the care he required, treated both her sons like absolute crap. Sadly FIL died a few months ago and we are dealing with her care with 4 carer visits a day, meals on wheels, weekly cleaners and fortnightly gardeners. I hate to say this but getting a diagnosis hasn't really achieved anything other than helping us get social services involved with a lot of fighting, and getting funding for the carers. But in terms of treatment she was diagnosed 18 months ago and it's made little difference. She also has hallucinations and depression. In terms of diagnosis she did have a scan as part of the diagnosis, since then she has been medicated, refused to attend 4 appointments out of about 7 total appointments, then they said she is settled on her meds so they are referring her back to the GP to manage. So she has been discharged.

Thanks @toomanydicksonthedancefloor1 I suspect our experience will be broadly similar.
Ive just written to the gp to ask if he can be scanned else where.

My mum's scan came back as normal which was very strange as her memory dysfunction is now at the level where she repeatedly asks the same questions over and over and cannot store any new memories, she was diagnosed by other means as the scan was no use at all not sure why they bothered with it.

Although it can show structural changes in the later stages, the CT doesn't necessarily give a diagnosis of Alzheimer's disease because it doesn't show the plaques and tangles.
It is useful for ruling out other causes of dementia symptoms, such as vascular disease, tumours, or fluid build-up (hydrocephalus).

When my Mum had the brain scan we were told it just showed changes consistent with her age.

It wasn't until after we'd been through the full memory testing process that we got the diagnosis - early stage mixed Alzheimers & vascular Dementia some of which had shown up on the scan as well.

Because there are other things that can cause cognitive changes that aren’t dementia, such as normal pressure hydrocephalus, tumours etc. It can also help diagnose the type of dementia ie vascular.