Memory "clinic" assessment problems/questions

[FiveFoxes]

Sorry this is long...

My Mum has been having memory problems for a couple of years now which have got progressively worse (she can't tell the time, forgets important information, is forgetting how to write..). She lives alone. She finally agreed to speak to GP about her memory, who did a mini test, which my Mum failed spectacularly, so referred her to the Memory Clinic.

The Memory clinic in my area seems to be run by a completely different NHS trust that just deals with mental health. Anyway, after the GP appointment I received a call from someone wanting to make an appointment. Her English was very poor and I struggled to understand her and she struggled to understand me. Eventually she managed to make an appointment. Then called the next day with a garbled answerphone message and I had to call back. Eventually established the appointment time and date. It turned out that the Memory "clinic" would involve them visiting my Mum at home, which was very odd.

The appointment came. Unfortunately it was the same lady with poor English plus a supervisor. She was a healthcare assistant I think. The tests were a complete farce. She was struggling to ask the questions, I was struggling to understand her and was then trying to interpret for my Mum. The supervisor kept interrupting telling the lady that the question need to be asked in a different way. Some things were completely skipped over, such as following instructions, due to all this. My Mum became increasingly distressed by it all.

It turns out the next step is that someone (a doctor?) reviews the notes which they made and refers her to a CT scan. Then will give a diagnosis and these ladies will then return to break it to my Mum and I. Not sure how she gets prescribed some medication?

I really want to complain about how this test was conducted in the worst most unprofessional manner. And I know it sounds awful, but I think being able to speak and understand English well should be a criteria for the job. How can you assess understanding when there is a language barrier?

I know my Mum has a problem and I know it's probably Alzheimer's. But I feel so let down with this system. I was expecting that we'd go to an appointment in a hospital and see a doctor for assessments, not this. It doesn't change the outcome, but it has made the process so awful.

I needed to share to get this off my chest and to see if this was a normal way to diagnose vulnerable people with a life-changing condition.

Thanks! I will look out for a DM. I'm on the App mostly so think I have to go onto website version to see it, so might be a delay.

Thank you.

Thankfully with experience from FIL, I have got the PoAs for Finance and Health in place. Luckily started early with that one as it took 6 months to get them back. Plus the months of getting the forms filled in before that!

It can be a real pain can't it? Luckily DF was immensely practical when it came to being ill and dying and sorted them out for him and DM years ago. When my ILs saw how suddenly DF was taken ill and subsequently died and how that process was made so much easier as we had LPAs in place, they sorted them out too, which was really lucky as DM went on to develop Vascular Dementia.

I'd also advise getting in touch with your local Carer's group. Ours have been very good at supporting the family and DMIL through her illness

My dad had his memory clinic assessment at home, with someone whose identity mum was vague about but who she thought was a community psych nurse. This was in February 2020 and he was booked in to see a consultant at the hospital the following month.

Then the whole world went mad and people with dementia didn't matter any more, only people with Covid mattered. Mum had a phone call from the hospital saying to pick up drugs at the pharmacy and start giving him them, no explanation, no discussion. Over the next three years he never saw or spoke to anyone at the hospital. No proactive monitoring. Only when he had an absolute crisis refusing to get out of bed and saying he was dying did they get another visit from a psych nurse who upped his medication. GP not interested. They were abandoned to get on with it, a pair of 80 year olds. Struggled along completely unsupported for 3 years until dad died suddenly of a condition unrelated to his dementia.

Yes I'm bitter.

This is good advice!

I am so sorry for everyone who has been through this and is going through it.

It is so horrible and unfair. With FIL, his wife was with him. So whilst we did a lot of helping and supporting them, it was still one step removed, although awful and heartbreaking.
This time it's my Mum and, as my Dad died a few years ago, I have ended up as number one carer. I am not sure I can cope knowing what's ahead, so thank you for the suggestion, I will try and find out about Carer's groups near me and hope they cater for those who work!

Thank you to everyone who commented. I will contact PALS and complain about how the test was administered. I am sure Mum clearly has dementia, but I am not happy with how the diagnosis is happening. I have got the date for her CT Scan now. She still thinks they are going to be able to give her medicine that will make her better...

I hope your complaint went well. Sounds dreadfully unprofessional. As others have said I think it’s best to complain immediately and have the home visit test done again properly to kick start the process.

Thanks. I have complained (politely!) To PALS. It has been forwarded to the Service Manager for a response. They said it might be a couple of weeks. In the meantime, I have got an appointment for a CT Scan.

I am quite scared of knowing tbh, even though I think I know.

Glad you've got the scan sorted st least.

My mum was finally diagnosed last week. She’s currently in a temporary care home placement but I can’t see her going home. We had a wonderful consultant all the way.
if you aren’t happy perhaps ask for a second test. My mum was tested five times. Not always same person. Good luck in this heartbreaking journey x