Awaiting a diagnosis…

[Johnno46]

Hi all, this is a totally new experience for me so please bare with me and excuse the relatively long post.

Over the last few months my family have started to wonder whether my father (74 years old) was in the early stages of dementia. It started with fairly minor things like forgetting road names nearby to his house and just general confusion but it was often enough to cause concern and very out of character.

Of course, in the current climate (lockdown) my elderly parents have found it very hard to get information made harder by the fact they are not computer ‘savvy’. Obviously the local surgery has been out of bounds but they did manage to speak to a GP and he suggested that my father have an MRI scan based on things that my father/mother had mentioned to him in earlier visits.

It took my father for the MRI scan approx 5 weeks ago and the results have since come back as no signs of dementia showing but there has been a suggestion that a Memory Loss Team be appointed but we are having trouble getting an answer on when they might get a visit from this team which I guess is understandable in the current climate.

In the last 4-5 days, things have got significantly worse with his behaviour. He seems delirious and the main symptom seems to be that at certain times during the day he completely forgets who my mum is (they have been married for over 50 years). This currently seems to happen in the evening, during the day his behaviour is relatively ‘normal’ .

I happened to mention all of this to someone who used to work in elderly care and they suggested that the delirium could be caused by a Urinary Tract Infection but he has been tested today and it came back clear.

This is all very new and distressing for us all, I am obviously not looking for any type of diagnosis on this forum but merely to hear from people who have been in similar situations and maybe suggestions for help and resources (or anything else)

Thanks in advance and I will try and keep future posts a little shorter.

 

[nellbelles]

Hello @Johnno46 and welcome to DTP
I wonder if the following link will help clarify some of what is happening?

Sundowning and dementia

Sometimes a person with dementia will behave in ways that are difficult to understand in the late afternoon or early evening. This is known as 'Sundowning'.

www.alzheimers.org.uk

 

[silkiest]

Hi @Johnno46, welcome to the forum, you will find a lot of information here ( easiest way is to put a topic in the search window and look at all the relevant threads)
MRI scans often show no changes when people are in the early stages of Alzheimer’s. My MIL had 2 x MRI and 1 X CT scans before she was diagnosed a few years ago. This year my mum was diagnosed without a scan - many NHS areas do not routinely scan now as it is unnecessary irradiation if they can be diagnosed by other assessments.
I would ensure your dad has definitely been referred to the memory clinic/ team and formally request a referral if he has not.
What you'r describing could be something called 'Sundowning' where people with dementia are worse in the late afternoon/evening, but it may be something as simple as over tiredness. Has your dad had any other investigations? the usual protocol before referral to the memory team is for the GP to screen for all other conditions that can affect memory - anaemia, diabetes, hypothyroidism etc. It would be an idea to ask if all the relevant bloods have been done. He should also have an ecg before referral to memory clinic if the screening tests come back satisfactory. The ecg is needed as some dementia treatments cannot be given if the person has a heart condition, also some heart irregularities can affect the thought process or increase the risk of stroke or TIA (mini strokes) which in the long term can contribute to vascular dementia.

My mum attended the last face to face memory clinic in our area before the first lockdown but I know the services in our area have still been seeing people as MIL had to be re assessed during the second lockdown due to a deterioration in her condition.

If you want some detailed reading the National Institute for Health and Care Excellence (NICE) updated their guidelines on assessment, diagnosis and treatment of dementia in october which are available at: https://cks.nice.org.uk/topics/dementia/diagnosis/differential-diagnosis/
Whether your dad is diagnosed with dementia or not now is the time to ensure you set up Power of Attorney for health and finance for both of your parents and register them immediately ( this process can take a few months). Your dad should still be able to give consent now. It is cheap - you don't need a solicitor - go on gov.co.uk and search power of attorney to register and fill in the forms. Once registered your parents GP will then be able to talk directly to you and you will be able to push the assessment and referral if it has not already happened. It might not seem necessary for your mum, but bear in mind if your dad has always sorted a lot of the household bills she may need help herself if he is no longer able to keep on top of things.
Good luck