What would it help neurologist to know?

[FiniteSagacity]

We (well DF, but we’re taking him, from nursing home) have an appointment with a specialist dementia neurologist - what would it help them to know?

Long question/history for context - but I just want to know how to help a new clinician know everything they need to know.

DF has no diagnosis beyond ‘cognitive impairment’ (not mild) and ‘executive dysfunction’. This is very frustrating because he has been in a nursing home for a year and has had loads of tests and assessments.

2 years ago he was living independently and driving but this week he didn’t know which daughter it was when she visited. He was told she was coming, didn’t recognise her and then didn’t believe it was her, was convinced it was another daughter.

Multiple physical health issues including diabetes with the leg ulcers and foot issues that brings, and double incontinence.

We’ve had parkinson’s, lewy body dementia, and vascular dementia mentioned but how can I help a new clinician get up to speed in one appointment (in a health service that struggles to join the dots).

it sounds very worrying and frustrating for you, OP.
I would expect / hope that all the relevant information / test results would have been provided at the point of referral to the neurologist. They will ask you for the information needed to help inform their assessment. They’ll ask about previous level of function, deterioration, what you’ve seen and what your concerns are. Don’t worry. They’ll be able to direct you to the information that they’ll need from you. Good luck

I think a timeline and how quickly things have come on is important and mention the types of things he has lost mentally and physically.
Mention the more subtle changes you've noticed and how it's affected the family. Many if the more subtle changes in personality or memory or doing things are missed by people who don't spend a lot of time with them.
My late husband had a brain tumour and had had radiotherapy. He had about 4 things he talked about so to people he met in the street he seemed "normal" but living with him the deficits were huge.

I'd write everything down, type it up if possible and give a copy to the consultant so he can keep it for reference and one for yourself to remind you what to say. Good luck

In neurology history is everything. I used to be terrified of our neurology professor as a junior doctor as I would miss one thing in the history and would get into trouble. Certainly improved my history taking skills!!!

As above, but I would also be explicit in that I would be clear that I would like a definitive diagnosis. Unfortunately, in your Dad's situation it may not be all that helpful in his day to day care. It may help with his long term care. e.g. Specialist Dementia Care. It is so difficult for you.

Yes think about timeliness. What where first things people notices that were odd for him
And how have things changed over time
Neurologist will also be thinking in terms of what type of symptoms, so changes in
Mobility
Thinking and reasoning
Impulsively
Problem solving
Speech/ voice
Language/ word finding
Long term memory
Short term memory
Visual changes or hallucinations
Also mention if he is having any swallowing difficulties
They will prob also ask about family history too.

Has your DF had any CT brain scans carried out at all OP? It was those & evidence of small vessel brain disease that resulted in my DM’s dementia diagnosis. Without it cognitive impairment would have continued to have been the explanation for her difficulties.

In our case however it happened organically, so I understand is difficult to push for or suggest when not medically qualified, as we all are generally when trying to get answers & the best care for our loved ones, from the healthcare system. But have real world & lived experience of the difficulties they’re having.
In my DM’s case the CT was carried out as part of investigations following a suspected stroke (where I understand brain CT’s are carried out as standard). It was the consultant neurologist who categorically ruled out stroke & reported evidence of small vessel disease & therefore likely vascular dementia. Formal memory & assessment were still needed but helped very much by the neurologist’s opinion.

Not that you want that or any diagnosis of that nature. But obvs want & need to best help your DF. Just our experience anyway. Good luck.

It helps to know what DF was like 2 or 5 years ago. When my aunt saw the neurologist (with levy body dementia), he noted that she ran a successful business independently a few years before, which shows the clear contrast to her state of confusion at the appointment.

Thank you all so much for sharing, it helps to feel prepared and I do think we want a definitive diagnosis. I think DF might actually find that helpful as a ‘reason’ so much has changed for him.

@Musicaltheatremum - I’m so sorry about your husband 💐 DF has had a few topics that means he can seem okay for a short time too.

@Tropizienne there have numerous tests including CT and MRI scans but nothing conclusive. Which is confusing for DF.

I can adapt a timeline I have (from many dealings with health and social services) but make it more about the changes we’ve seen in DF. Great to print a copy for DF and for us - 2 daughters are going with him.

DF has done Health LPA but it might be triggering to mention it in front of him, so I’ll add that to the notes discreetly. None of us want to make decisions for him but he needs a lot of support.