Memory "clinic" assessment problems/questions

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

Glad you've got the scan sorted st least.

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.

This is good advice!

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.

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

I agree with not waiting until diagnosis before complaining, I would do it now. You can't be banned from a service for pointing out that a HCA didn't have a significant standard of English to be understood by you and your DM and was repeatedly asked to ask the question on another way be her Supervisor.

I'd also really recommend seeing if your DM will agree to LPAs for Health and Finance if you haven't hit them already. I don't think that you're able to apply once she has been diagnosed, although I'm happy to be corrected if this isn't true and the process for guardianship is more difficult and more expensive.

I don’t think for one second it is racist in this situation. Your issue is with the assessors inability to effectively communicate with your DM. Someone who is being assessed for dementia needs clear, concise instructions in order to minimise the stress that the assessment may cause. It may well be that this HCP will be extremely beneficial to someone whose English is a second language - or indeed doesn’t speak English at all. That way, it means an interpreter wouldn’t be needed. But the right HCPs need to be carefully matched when assessing clients.
Interestingly, my stepfather is in a care home for dementia, he is under a DOLs order. The social worker who manages his case is deaf. When she visits him, she is accompanied by someone who can sign to her and translate the SWs signs for us. It’s a great set up that works well.

OP, I think that your DM may be under the same team as FIL.
If its OK, I'll PM you with that information. If it is the same team, I would highly recommend that you see if they can transfer your DMs care to a different team even if it means travelling out of area for her care.
FIL had the same problem with the Doctor who he then saw through the service...
He couldn't understand, he stopped talking to FIL and decided to just speak with MIL like FIL wasn't there.

Then FILS prescription had a child's DOB on it, scribbled out... so not 100% sure the Dr didn't need a bit of memory help himself!

I would tend not to wait until after diagnosis to request a review and raise the issue of the language barrier. It seems likely the person administering the cognitive assessment was a student, hence a supervisor being present, and her supervisor is probably at her wits’ end, embarrassed and hoping that patients will raise the issue. Older adults with cognitive impairment and who are likely to be very anxious need very empathetic communication especially when they are being tested.
The thing is, the diagnosis is going to be based on an extremely flawed assessment so not really worth having anyway. Nobody will be thinking you’re racist, just concentrate on the communication problems. Your mum needs you to stand up for her now …
It’s normal for the assessment to be carried out in the person’s own home, to reduce stress. My mum was (re) assessed a few weeks ago by a lovely nurse who reassured her and helped her relax throughout the process. Mum has already had a scan. We are going to see the psychiatrist tomorrow and I expect mum to receive her diagnosis then.

Very scared of it coming back on me/my Mum and being called racist and banned from the service or something. Point out that the person accompanying repeatedly asked her to put the question in a different way.

So, the pathway should usually be

GP referral
Memory clinic initial assessment - clinical interview plus standardised testing with the person and a close informant ; is usually a nurse led clinic (I wonder if the person you saw was a student nurse?)
A psychiatrist reviews results - chooses whether or not to refer for a scan, chooses whether or not to refer to psychology (for complex neuro profiles).
Psychiatrist technically diagnoses - so your mum is officially being diagnosed by a Dr
Feedback appt with person and their carers/a close person or their choice
Discharge to GP management (told what medicine to prescribe by the psychiatrist), plus dementia nursing follow up

You should definitely complain and it isn't racist to say the person's level of English was not adequate - the standardisation of the tests and the interview rely on both the assessor and patient having a good level of shared language (in the UK, a good level of English)

You can also look at it from the point of view of the HCA who is being sent to carry out memory tests when it’s not currently within her capabilities. I’d argue she is being put in a horrible position.

I really wouldn’t wait until diagnosis OP to complain. I know you think you know what is wrong with your Mum but the fact that the basic memory test hasn’t been done properly needs to be flagged asap. I also wouldn’t worry about being labelled or banned. Just be completely factual, it’s a completely valid thing to raise in the circumstances. My experience is that sadly complaining in the NHS makes a difference.

I’m no expert but the only medication I know available is rivastigmine which can delay progression. Also aware that antidepressants and antipsychotics can also be prescribed.

I would push for an MRI scan as well, I know someone who was wrongly diagnosed with dementia when it was a brain tumour.

It is perfectly okay to say that the test results will not be accurate as both you and your mum were unable to understand the questions due to the HCP's strong accent.

There's nothing at all racist about that, and it's important that that is flagged.

First step would be to call the memory team and ask to speak to the team manager. Describe the problem with the home appointment - that you don't feel it was conducted in a way that was adequate, and request that it is done again by a different member of staff. If that is not offered, put in a formal complaint. Ask what the complaint procedure is, the health trust will have a formal process. Complaints usually result in action, I say that as someone who has worked in the NHS.

Yes my Mum was visited at home by a lovely man from the Memory clinic, then she was referred for the scan and the final diagnosis (can’t remember who gave that - possibly the nice man 👍).

Agree with you that someone who speaks clear English is needed in this scenario. Can you ask for another visit?

going forward after the diagnosis within our health trust there was a lot of dementia support we were directed too - particularly in the early days there was a weekly meet up for carers held by a RMN and OT. They gave us a lot of useful info regarding carer allowance, attendance allowance, blue badge plus loads of other stuff we didn’t even know existed. Also put us in touch with a carers group who ran coffee mornings, had a beach hut we could use and other ‘nice’ things for carers. I think we were very lucky and it definitely helped us as a family when we were going through tough times (Mum passed 18 mths ago). I hope you have the same resources wherever you are.

I would complain about the person who came to the house. It’s not racist to expect someone being assessed for dementia to be spoken to in a language they understand.
My experience is that memory clinics do home visit (which makes sense). I’ve been through the same thing with a parent but they did have a CT scan which was inconclusive.

I’d also echo what other posters say about lack of support following a dementia diagnosis, my experience was that we were just left to it. Looking back I’d query the point of putting someone through a diagnosis at all which was a very distressing experience for my parent. We did get a leaflet and were told it was possible to continue living a normal life, maybe it is for some people but absolutely not ime. Every bit of support or help we had had to be fought for and ultimately I don’t think any of it helped at all.

Sorry to be so negative but it’s really tough. I would try and speak to GP and adult social care asap in case they can offer anything.

We did find a dementia group ourselves (NHS and social services had said they weren’t any in our area) that was really good.

From what I've read online and my own experience with my mum, the format of the questions and tests run by the memory clinic are standard. Poor English on the part of the person conducting them is worth complaining about.

In my mum's case we were told that the results would be reviewed by medical staff to assess whether further diagnosis (eg MRI scan) or treatment were suitable. Neither were suitable for her. So don't assume it's a foregone conclusion that a scan/treatment will be beneficial.

There is generally no "treatment" for dementia, apart from a medication that might delay the development of early Alzheimer's.

Fortunately our Trust has a Dementia Hub who you can approach for support (haven't actually done so) but GPs can't really do anything, because in most cases there's no medical intervention.

Home visits, and diagnosis without a scan are the norm in many areas. (Also, diagnosis then ‘discharge’ to the GP with minimal information and support; and GPs being anything other than proactive, but that’s a different issue).

However, basic ability to communicate with someone who may have dementia is an essential skill. Flagging this up is something you definitely ought to do.