Alzheimer’s diagnoses but no follow up

[comehomemax]

My mum had a diagnoses of Alzheimer’s around 2 years ago. She was given a prescription and us currently doing ok. However there has never been a follow up and I’m wondering if that is normal or should we be pushing for a regular assessments? It just feels odd that she has been diagnosed then no one is medically checking the diseases progress.
Can anyone advise?

How is your mum generally? Is the dementia causing more problems now?
The quick answer to your question is yes definitely you should have had a follow up, but it's shocking that you're generally left to get on with things after a devastating diagnosis. I imagine covid hasn't helped either.
What we found with my mum was that we could only treat the problems not the causes. So as the dementia worsened it was a mix of medical and social problems. Sometimes it was hard to separate the two.
I wish we'd sought help earlier. I think support groups would have been very helpful. Speaking to other people who've been through it is always such a great support as few people understand.

Thanks for responding. She is ok generally and the medication has helped somewhat however i just feel a bit abandoned by the medical side! Her diagnoses was at least a year before covid so it isn’t even that to blame - just all medical reviews stopped on giving the diagnoses. My uncle in Oz has a monthly checkup with his Alzheimer’s and I started to worry that I should have pushed for more medical support/ assessments.

It depends on what has been commissioned in your area. Where I am ( in the U.K.) the CCG have commissioned the NHS to provide a diagnostic service only. They have funded follow up with Memory Support service which is run by Alzheimer’s society. So there’s no possibility for medical follow up once diagnosis and stabilisation on medication ( if that’s appropriate) is complete.

The local memory service rings me up every 3 months to review how Mom is and if we need any advice or support. She's on medication so they tend not to do formal reviews but I can request one if needed.

Just to add, OP, if your area is like mine, you couldn’t have done any more. The NHS Service would have no choice but to discharge her. So nothing to worry about, thinking you should have pushed for more-it wouldn’t change the outcome. I personally think a real shame this is all that’s offered, but there it is....

My MIL was diagnosed about 4 years ago and put on medication (I'm not sure it had any effect TBH). After the initial diagnosis, she was phoned once a year by one of the charities and that was it.

I think because any help was going to be self-funded anyway, the GP and SS just washed their hands of her really.

DH had to organise for carers to come in when FIL was alive because he was too ill to organise anything for the pair of them and now he has died Dh sorted out a care home for her.

Presumably some areas are better than others but in our experience, charities are good for information but that's it and GPs just leave you to get on with it.

@canary1

It depends on what has been commissioned in your area. Where I am ( in the U.K.) the CCG have commissioned the NHS to provide a diagnostic service only. They have funded follow up with Memory Support service which is run by Alzheimer’s society. So there’s no possibility for medical follow up once diagnosis and stabilisation on medication ( if that’s appropriate) is complete.

Ditto my area. Memory assessment is just that -assess to diagnose - there's no point in further assessment as you already have the diagnosis. Other than that i guess it would be cruel for the person- to keep going back to find out how much you can't do now, because you've inevitably declined?

What would be more helpful is giving people the confidence to know what to do, how and when to access it and where exactly to go, thats what the follow up charity support services are for- ask the memory clinic who does the post diagnostic support and ask for your mum to be referred if she consents, or yourself, or ask for the contact details.

Thankyou, I will contact the memory clinic