Diagnosis process

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Further to a home visit after concerns with her memory, my dm was referred for a brain scan that took place a couple of weeks ago. For those of you whose parents were in a similar situation, how long after the scan was a diagnosis provided? What were the next steps? Any insight much appreciated.

My FiL was diagnosed with dementia just over a year ago following a private brain scan, carried out in response to signs of cognitive decline. The NHS view was to wait six months and see what happened, but my PIL were very anxious about the situation and wanted faster answers, so they paid for a private consultant and scan. They got a 'probable' diagnosis of dementia within a few weeks of the scan (it's not possible to diagnose 100% accurately except post mortem).

Since then, the process has been a mix of NHS and private health. FiL was put on various drugs and handed back to the GP. The drugs have been tweaked a bit over the months. There have been recommendations of a couple of local support groups. Beyond that, not much had really happened tbh. PIL have been back to the private consultant a couple of times, looking for answers or solutions I think, but the sad truth is that there's not much to say. They can tweak the meds, which does help a bit, but beyond that there's not a huge amount to do except watch it slowly get worse. Sorry, I know that's not very cheerful, but that's the sad truth about dementia. There was a tiny bit of SS involvement at one point, but tbh it was so inadequate that PIL are now starting down the private care route (they're lucky to have that choice).

@cestfait , thanks for your response. Was FiL asked to come in to discuss the results of the scan? My df is having to tread VERY carefully and is reluctant to keep bringing it up with dm, understandably, who maintains that she hasn't heard anything back.

The brain scan isn't an exact diagnostic tool - its more to rule out things like tumours. As a pp said, a true diagnosis can only be made after a post mortem. The diagnosis of dementia / Alzheimer’s is made after a length of time, observing physical and mental changes. There currently isnt a cure, only medication to treat symptoms. There are different types of dementia.

I would suggest that they get their legal affairs in order now whilst she still has capacity to make decisions. Maybe a POA application?

Iirc they had a phone call plus a letter. In FiL's case the scan was maybe more reliable than some (it was a DAT scan for Lewy Body Dementia), but it's still not totally conclusive - I think it was the combination of scan plus symptoms that made the consultant so confident of the diagnosis. (The doctor he'd seen previously had diagnosed probable Parkinsons, but I think that's a very common misdiagnosis with LBD.)

NB the PIL were also initially very cagey and unwilling to discuss what was happening, but once they had the diagnosis, that all changed - it was as if a switch flicked, and they realised they were going to need to be open so that we could support them.

My dad was given the diagnosis and then we were left to get on with it. I enquired about what help we would get and we were basically given a bunch of leaflets.
One thing that no one thought to mention was that my dad would be disregarded for Council Tax, you might also want to look into claiming Attendance Allowance.

@cestfait my DF has a memory clinic appointment next week, I am expecting a diagnosis of LBD, have you found the drugs help with the hallucinations and paranoia at all?

I'm sorry to hear that. With FiL, the paranoia and delusions (he's had more delusions than outright hallucinations) do seem to have been quite a bit better recently, but whether that's the drugs or just the natural variations in the disease is hard to know. Unfortunately he has had quite significant weight loss and nausea, though, which we think might be due to the drugs. At the moment he's going through a phase where the confusion and lack of confidence are more significant than the delusions - still hard, but not quite so horrible to deal with as the delusions.

Thanks everyone. I unfortunately have some prior experience of what Alzheimers looks like having witnessed a grandparent's decline owing to the disease in their mid sixties onwards. I was mostly curious as to how the information is relayed to the patient e.g. if they are called in to discuss results or just told over the phone. I am concerned there is a chance dm may be informed and choose not to share the information (I think she is understandably frightened).

My parent had noticeable memory loss for 3 years but was v young so we put it down to stress of working.

We are now 18 months on since we went to the GP, 15 months on since brain scan, almost a year since psychology got involved with lots of tests which took months & 9 months since OT assessment & subsequent report saying they have sig memory decline.

but we’ve still never seen the psychiatrist & don’t have a diagnosis. Because we think it’ll be really stressful being diagnosed so young, I’m not pushing for one. They haven’t declined further since last year & a bunch of leaflets won’t help.

Parent seems to have put it all behind them. In this time we have got PoA, sorted out finances & had much more open talks about loads of things. Also increased family time, increased exercise & their holidays together.

Mine was called in and I went with. Clinic was happy to share quite a lot with me. Definitely sort out power of attorney asap, though it may be too late to get GP to sign. There was a few monitoring appointments afterwards and some community liaision.