Memory clinic appointment following scans and tests - what to expect?

[Lemonlolly89]

My MIL has a memory clinic appointment later this month. She was referred to the memory clinic for initial tests a few months ago and has since had a brain scan of some sort. The clinic appointment as we understand it is to meet with a consultant to go over the results though it has been difficult to find out exactly what to expect from this appointment. I was just looking for people's experiences. Do they tend to give results there and then? Or should we expect further tests and investigations?

The scan itself was in July so it seems like an awfully long time to have waited for results. There is part of me hoping if it was clearly a dementia diagnosis that they would have called us in sooner, but I don't know if that is hopelessly naive given NHS waiting times.

She has had problems with her memory for a couple of years (repeating herself, forgetting conversations etc) and this was initially put down to depression (which surprised us all). But despite SSRI treatment it has got worse as time has gone on. She is now getting lost when she goes out and struggling to find things in the supermarket when she goes to do her shopping etc. She is only in her early 60s and it is obviously very upsetting for her. We're all very concerned but hopeful that something else may be at play (long Covid brain fog, COPD complications). But I am also realistic that we need to prepare ourselves.

I'd be grateful to hear anyone else's experiences. Love to anyone else going through this.

In our case the appointment was quite soon after the scan. The scan was quite key in confirming my mums diagnosis is Alzheimer’s. She was informed by a very kindly lady from the memory clinic in person. My sister and I were not surprised but mum found it very hard to hear. In our case the scan was conclusive but other forms of dementia may be different. There are some medications that have some success (for a bit) with Alzheimer’s so she has started that and goes back to clinic every few months. Depression seems to be common and they are recommending anti depressants which she hasn’t yet started. She was concerned about stigma but telling her that is it a symptom of the Alzheimer’s has helped her process.

the appointment was at mums house, there was lots of information and leaflets given to us. We agreed that a driving test would be wise so she has since done this and passed but will be repeated every 6 months.

there really was a lot of information given and despite mum being upset at points the lady was very nice and took her time. Nothing was rushed and all questions answered.

No Idea if any of that helps.

This is not related to what to expect from the diagnosis and appointments, but is an interesting tangent on ways to possibly manage mental decline.
The woman being interviewed is a doctor whose husband was diagnosed and she discusses how she was able to improve his symptoms by supplementing his diet with MCT oil (basically coconut oil). As a doctor she also discusses why and how the supplements they used might have worked in terms of brain chemistry and energy supply.
If you have the time it might be worth watching and considering. It is also an approach used in Ayurvedic medicine.
Best wishes,

Keto and MCT for Alzheimer's, One Doctor's Family Journey

Thank you for sharing your experience and I'm sorry you and your mum are having to deal with this disease. I hope she manages to live well with it for as long as possible x

Sorry to be a negative voice, but we had a very negative experience. Memory clinic took six months following initial concerns raised with GP. Mum scored very poorly at the appointment (well within the boundary of dementia, according to the scales), but no scans were done, and she was given a diagnosis of Mild Cognitive Impairment. There was no support or signposting of any kind. Since then (well over two years now), there has been no follow-up, no suggestion of a check-up etc, in spite of mum's cognition declining very significantly, and her seeing the GP very regularly for other things, when her mental state must be obvious. It's very clear to us now that she has dementia, but neither she nor my dad have the appetite to pushy for another appointment (dad's in denial and mum's too confused these days).

I'm so sorry this has been your experience. I hope you and your family eventually get the support you deserve. I've been reading about mild cognitive impairment to prepare myself in case this is the outcome for my MIL as well. Thank you for sharing.

My partner was referred to the Memory Clinic in 2024. He is also in his 60s. An Occupational Therapist came to our house and did an assessment. He also had a brain scan in December 2024. He had an appointment with a consultant in March this year. This was about 90 minutes long. She gave him the results of the brain scan (nothing was found) and also went over the results of the OT assessment. She told us that the results of the assessment would suggest that he is borderline, as on some tests his score indicated some sort of issue. She didn’t provide a diagnosis but referred him to a neuro psychologist for further tests/assessment. After some chasing, he was eventually seen in August. We were told that there would be another appointment with the consultant to discuss the results - we are still waiting for this.

Going back to the first appointment with the consultant, it included further tests and discussions about his lifestyle. For example, she looked at his handwriting, patterns of speech and had him walking up and down the corridor so that she could observe his gait. She also did hand movements and he had to copy them. I was there throughout and able to contribute.

As you and others have identified, it is a long drawn out process, but in our case it has been very thorough.

Thank you for sharing your experience. I'm sorry you didn't get any definitive answers. It's helpful to be prepared that we may also not get to the root of it next week. I hope you and your partner are coping as best you can and wishing you the very best for your next appointment.

My Dad had his scan in the hospital and then the clinic appointment at home.

They asked him lots of questions based on an addenbrookes scoring. He was scoring extremely low and the mental health nurse decided he had a clear diagnosis, so wouldn't continue and cause more anxiety.

My Dad didn't want to know but did want him to tell me, which he did. Dad has mixed dementia - vascular and alzheimers. The nurse discussed the potential medication.

And that was it!

Not long after he had some serious falls, although wasn't hurt luckily. At that point a choice had to be made for some sort of supportive care - and he chose the option to come to live with us.

We then fell through the cracks as the move meant he changed mental health area and it wasn't noticed for 18 months because we didn't realise that there was such continuing advice from that MH department.

I've also only recently been put in touch with Admiralty nurses. Again, maybe something to explore, if the diagnosis comes back as dementia (which it might not - at one point they were considering parkinsons for Dad)

My dads memory clinic appointment was about 8 weeks after a scan and assessment, but we were warned beforehand that the memory clinic appointments take a while.

The memory clinic nurse talked us through the scan and assessment results and gave us the diagnosis. One thing that stood out , was that before she delivered the diagnosis, she asked my dad if he wanted to know. I hadn't even considered that, so I was very grateful that my dad had the opportunity to decide whether he was told the diagnosis or not.

The appointment lasted for just over an hour, and we were given a lot of information on further resources and how to access help and support.

We've had a couple of follow up appointments since and found the clinic team to be friendly , reassuring and helpful , at a very daunting and upsetting time.

Thanks for sharing, I’m glad you and your dad have had compassionate care through the process. Wishing you both the very best

I'm sorry it's taken me a while to reply. Thanks for sharing and for the advice about Admirality nurses, I will keep that up my sleeve depending on the outcome. Wishing you the very best, it can't be easy to step up as live in carer as you have x