Partial diagnosis - got to go back in 6 weeks - normal?

[Bearz77]

My mum has been showing symptoms of dementia for a few years but refused memory tests in the past. Following a fall she was seen by a dementia nurse in hospital who referred her to a dementia nurse’s clinic (ct scan and a number of blood tests done there).

We went to the appointment on Wednesday but because she’d only just been discharged from care (step down care in a care home) they wanted to give her another six weeks to settle back in at home after 2 months away. Mum was extremely upset about the discussion (our telling the nurse of her symptoms) and having to do some tests, which she refused to complete.

At the time I thought it was but I’ve since realised that we have to wait six weeks to go and do the same thing, then will have to wait to get an appointment at the full memory clinic and I guess consultant (not sure how long this usually takes). All the while it’s delaying the start of medication (nurse says she suspects it’s Alzheimer’s) and unfortunately we’ve seen a decline in her mental state since coming home. A rehab carer who called today said it’s better to get her on the meds ASAP.

Would it be wise to push for a) tests for be completed at home/doc’s b) to ask dementia nurse whether she could go and repeat the tests sooner, having thought about it?
Just don’t know what the best thing is. Time seems to be of the essence.

 

[Louise7]

From your previous posts it was the dementia nurse who made the referral to the memory clinic after some initial tests, and it is the memory clinic who will need to undertake further tests and make a diagnosis. You don't say what tests the memory clinic wanted your Mum to have but as she was so distressed and wouldn't co-operate it's understandable that they have asked her to come back again when she is a bit more settled. She's had a hospital stay followed by a move to a care home then a move back home so has had a lot going on and these events can all result in increased confusion so it is better that she is assessed when back to her usual 'base line'. As a tip for future appointments it's a good idea to write down the symptoms to hand to the doctor/nurse at appointments so that you don't have to speak about these in front of your Mum, and also sit out of her line of sight so that you can nod/shake your head in response to questions without her seeing you do this.

Six weeks may seem like a long time but as it is the memory clinic who need to conduct the tests and diagnose (not the GP or hospital dementia nurse) you will need to wait for their appointment if that is the earliest that they can see your Mum. Although the rehab carer has said that it is better to get your Mum on meds asap until there is an actual diagnosis then you don't know whether she will get prescribed meds or not, and any meds will only help to control the symptoms of dementia, not slow down the progression. I can appreciate the need to want to get a diagnosis and meds as soon as possible but getting a diagnosis does tend to take some time and at least the process has now been started.

 

[Bearz77]

Thank you, Louise7. Your advice makes sense. I suppose since we’ve realised there’s a problem for at least 3 years and not been able to progress anywhere until she fell, it feels like a long wait but isn’t really since she is in the system at least. I noticed more odd behaviour than previously when I saw her on Saturday (eg eating sandwiches with a knife and fork, forgetting to put sugar in her coffee, twitching of foot and head) so it made me panic a bit. But you’re right, she has been through a lot and having the tests the day after she got home was probably very unsettling for her.

The tests were on one sheet of paper. They ranged from joining up numbered/lettered patterns and drawing a clock face with numbers to tapping the table when she heard the nurse say the letter “a” in a list of other letters, and recognising pictures of animals. There were quite a number of questions but she hardly got one right.

Thanks for the tip about writing the symptoms down. I did have them on a piece of paper but we were rushed in so quickly with my mum going first that it was difficult to find a way to pass it to the nurse. In hindsight maybe I should have got to reception first to hand it over.