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.

My MIL was visited at home by the memory clinic people.

Do they have PALS at the hospital where the staff came from?

Visiting at home makes sense - less stressful for the person being assessed. The language issue sounds a problem though. It shouldn’t matter that it was a HCA doing the tests, but the fact it wasn’t done well is not great.

But yes contact PALS.

That sounds dreadful, and distressing for your mum and for you too.

Agree that a home visit is a good idea as then your mum is in a place she's more comfortable with so her answers are likely to be more realistic (being stressed in a strange place means my mum can't answer simple questions).

But I completely agree about the need to being able to speak and understand English clearly. How on earth can they think that was acceptable??!! Complain to PALS.

I don't think there are any hospitals in the Trust. It just does Mental health, Learning Disabilities, Drug and Alcohol services apparently.

They do have a PALS though. Not sure about complaining, even though I want to, as part of it just sounds racist - that she couldn't speak/understand English very well.

I don’t think it’s racist if the issue was that they couldn’t communicate adequately with your mother. HCAs surely need to be able to adapt how they communicate as they’ll be working with a lot of people with different communication needs.

My Mum was visited at home by someone from a memory clinic. Dementia (likely Alzheimers) was diagnosed and Mum was put on medication from the GP. No CT scan done or suggested.

The Memory Clinic person said their service had a very high threshold and would not see Mum again unless depressed or aggressive. So for the next five years the only review for Mum's dementia was through the GP. She was not actually seen in person by a GP during this time. The review turned out to be an annual blood test with the practice nurse. Any medical appointments for other ailments were a discussion by phone with me (LPOA for Health) and issue of a prescription.

It's really shocked me that there's no diagnosis or review from a dementia consultant, as you'd expect with other serious conditions. People with dementia are just left to slowly decline without support until they have a crisis.

I would go to PALs and also cc in the service manager. The supervisor will support what you say if they also had to make comments.

I would happily write it for you in a format that gets you an answer. (I have to respond to PALs emails as part of my job so I know what to say to get the output you need).

I’m sorry you are going through this @FiveFoxes. I do understand. My DM has been slowly declining with dementia for over ten years. She refused any diagnosis until v recently via Power of Attorney. Normal for them to come out to you. No scan has ever been done and I don’t think they have the resources. Medication via GP. My DM is still under the Community Mental Health but that’s because she has sadly become quite aggressive (and I kicked up a massive fuss). Do complain, it sounds a distressing experience all around. Also Age UK are very helpful IME

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.

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.

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.

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.

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.

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.

Thanks everyone. It is shocking.

I kind of already knew that healthcare for dementia was appalling as my FIL had Alzheimer's and has just passed away (ironically the day before my Mum agreed to see the GP!). So we have some experience, albeit at arms length because of family complications. I know he had no follow up after diagnosis, but I was assuming they saw a doctor to get diagnosed!

My Mum also has CLL. She has blood tests and sees the Consultant for that every six months, even though she has been in remission for years. The contrast is shocking. I can't believe that there isn't even an initial meeting with a doctor.

I think I'll wait until after the diagnosis before trying to nicely point out via PALS that communication is a key part of doing the tests. Very scared of it coming back on me/my Mum and being called racist and banned from the service or something.

Interesting about GP prescribing the medication. Will she be referred back once she has the diagnosis? How will the GP know that what to describe (I assume there is more than one type of medication?)

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.

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.

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)

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.

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.

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 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.

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.