Concerned - early dementia or severe anxiety?

[Val74]

Hi I'm new here as have been searching all night for information about dementia and anxiety symptoms. Apologies in advance for long post but just want to put things in some form of context.

I'm concerned about my uncle, a very young 71 year old. He used to be the life and soul not just of the party but of absolutely everything. Lots of things in life knocked him in succession starting with redundancy from his job in his mid 50s after total loyalty to the company, his treatment then and thereafter I now believe to have been the trigger point for him slowly slipping into depression and, more latterly, anxiety. His hearing has deteriorated almost in conjunction with his anxiety so I (and others) felt that this was feeding into his feelings, for someone so sociable to suddenly be cut off from people and to constantly be worried about saying the wrong thing (because he couldn't hear what someone was saying) was incredibly tough to say the least.

He has seen doctors and now had two brain scans; first time he was told dementia was ruled out as there was nothing untoward on the scan, more recently my auntie has been told that although his scans are clear dementia isn't diagnosed by them anyway. His doctor has recently changed his medication in case he was having a reaction to that but this past few months he is increasingly disorientated, upset, and frightened; at times his confusion is so bad he doesn't recognise his wife and tells her he wants to go home to his wife.

I can see from researching that anxiety symptoms can often be confused for dementia. But has anyone here ever heard of anxiety/depression symptoms being so bad that they can cause these extremes of not recognising your own home or your own wife?

We're all so worried about him and just desperate to help him not be so distressed as when he's calmer he's fully aware of what's going on for him and then upset that 'he's' worrying us.

Thanks in advance and apologies again.

 

[Izzy]

Good morning and welcome to the forum.

I’m sorry to read about your uncle, it must be very worrying for you all. Depression often goes along with dementia and I think a lot of members have experienced this in their loved ones. My husband had Alzheimer’s but he also was treated for depression. I can only think that it would be best to go back to the GP with the concerns. Perhaps keeping a diary of what’s happening and sharing that with the GP before a consultation would be helpful/

I’m glad you found the forum. I’m sure you’ll get lots of help and support here.

 

[canary]

I agree that keeping a diary of the "odd" things that happen is a good idea - perhaps your auntie can do this as she is with him more often and will be more likely to see odd things.

Not recognising your home or wife is, IMO, a big red flag, as is the desire to "go home". Does this happen more often in the evening? There is a thing called Sundowning in dementia where there is more confusion in the evening/overnight. Other things to look out for are accusing people of moving things around, hiding or stealing things, accusing his wife of having affairs, thinking that other people are coming in and coming out with strange stories that are not true.

Make sure that the GP knows about any of this. Has he ever been seen in the memory clinic?

 

[Weasell]

If you would allow me the luxury of using a random dementia as an example , then I would mention Lewy Body. One of the things they will be looking for with this dementia would be atrophy Of the brain. At the start of this dementia the atrophy is slow. So it would be very easy to get scanned before the problem is showing up.

If you put Capgras syndrome into the search bar at the top of this page it may be of interest to you.
Top tip! Start talking to them before they See your face!


As always you can’t go wrong with @Grannie G compassionate communication.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[canary]

Hey, @Weasell , I dont like to be picky, but can I mention that capgras syndrome doesnt mean failure to recognise someone. I means that they think there are duplicates of a person or place. Typically they say - no, not you, the other one.
Sometimes the person with dementia wont accept that someone is who they say they are because they think its an imposter (capgras syndrome), but often they dont accept them simply because they fail to recognise them (maybe because they are thinking of a younger version). Its not easy to tell the difference and ultimately, it probably doesnt matter.
Sorry to be pedantic.

 

[Weasell]

Hey, @Weasell , I dont like to be picky, but can I mention that capgras syndrome doesnt mean failure to recognise someone. I means that they think there are duplicates of a person or place. Typically they say - no, not you, the other one.
Sometimes the person with dementia wont accept that someone is who they say they are because they think its an imposter (capgras syndrome), but often they dont accept them simply because they fail to recognise them (maybe because they are thinking of a younger version). Its not easy to tell the difference and ultimately, it probably doesnt matter.
Sorry to be pedantic.

I like pedantic !

I remember in the early days of Covid, someone on the forum pointing out that Corona was the name of the virus and Covid-19 was the name of the disease it produced. It was a point no one in the mainstream news had pointed out.

 

[Quite contrary]

Hi I'm new here as have been searching all night for information about dementia and anxiety symptoms. Apologies in advance for long post but just want to put things in some form of context.

I'm concerned about my uncle, a very young 71 year old. He used to be the life and soul not just of the party but of absolutely everything. Lots of things in life knocked him in succession starting with redundancy from his job in his mid 50s after total loyalty to the company, his treatment then and thereafter I now believe to have been the trigger point for him slowly slipping into depression and, more latterly, anxiety. His hearing has deteriorated almost in conjunction with his anxiety so I (and others) felt that this was feeding into his feelings, for someone so sociable to suddenly be cut off from people and to constantly be worried about saying the wrong thing (because he couldn't hear what someone was saying) was incredibly tough to say the least.

He has seen doctors and now had two brain scans; first time he was told dementia was ruled out as there was nothing untoward on the scan, more recently my auntie has been told that although his scans are clear dementia isn't diagnosed by them anyway. His doctor has recently changed his medication in case he was having a reaction to that but this past few months he is increasingly disorientated, upset, and frightened; at times his confusion is so bad he doesn't recognise his wife and tells her he wants to go home to his wife.

I can see from researching that anxiety symptoms can often be confused for dementia. But has anyone here ever heard of anxiety/depression symptoms being so bad that they can cause these extremes of not recognising your own home or your own wife?

We're all so worried about him and just desperate to help him not be so distressed as when he's calmer he's fully aware of what's going on for him and then upset that 'he's' worrying us.

Thanks in advance and apologies again.

Hi @Val74 I have suffered anxiety and depression on and off for most of my life and have never heard of either causing someone not to recognise places or people but I do read a lot about that on these forums in people with dementia. My 71 year old husband has Alzheimer's and may well reach that stage but hasn't as yet. Hope that helps.

 

[Val74]

Hi everyone, thank you for your replies, I appreciate it. I will look into the other links that have been suggested, thank you for that. I don't know whether it's reassuring or more worrying that nobody has yet voiced that they've known someone without dementia to suffer similar symptoms (i.e. wanting to go home/not recognising someone) with 'just' anxiety (I use inverted commas as I know how pervading anxiety can be and am not minimising it).

I read last night about 'sundowning' (thank you for mentioning it here canary) and it concerned me further; my uncle is generally ok (although not always) morning to mid-afternoon but my auntie says that he generally starts to become increasingly confused from around 4pm onwards.

I have suggested to my auntie about keeping a log/diary but as it's mostly just them alone I don't know if she will, purely because of the time factor and how tired she is already becoming. I've also told my auntie to check if they tested his thyroid and B12 levels (they tested for water infection at hospital last week) just to rule things out really.

Can I ask if anybody's loved ones had dementia incorrectly ruled out by scans?

Thank you again for your welcomes and support, it's very much appreciated.

 

[canary]

Can I ask if anybody's loved ones had dementia incorrectly ruled out by scans?

Yes, at least I think so. My OH was given a diagnosis of FTD (he has all the symptoms), but then later it was removed as the scans did not show atrophy and I was told categorically that he did not have dementia. Since then he has been in further decline, can do almost nothing and I have carers in to get him washed and dressed in the mornings. I think everybody is now aware that there is something going on and we now have a date for a further scan. Im keeping my fingers crossed.

 

[Rosie Apple]

Hi Val74

Your post about your uncle struck a chord with me, much of what you wrote also applied to my husband. He was treated for anxiety for several years after early retirement. Gradually, alarm bells began to ring as I became worried about other inexplicable behaviour. Our GP said it could be caused by a number of things. One of the things he did was to refer him to the Memory Assessment Service. At this time i started to doubt if we should take it any further. Especially if he was going through a 'good patch' when it's easy to find yourself trivialising things. I started to feel really guilty and a bit of a traitor, for suspecting the worse (I hope that makes sense). I was worried that they would diagnose Dementia when it wasn't.
As I understand it scans alone do not prove or disprove dementia. But are useful to look for signs. Maybe other people on here will put me right if I have got that wrong.

In my husbands case it was clear on his scan that he had vascular disease (and dementia) . Not the news anyone would want, but in a way it's better to know what we're dealing with and it makes sense of lots of things.

The thing to remember is that there are other causes for this, and whatever happens you need to know that you have done the best you can for your uncle who is fortunate to have such a caring relative.

 

[imthedaughter]

In my husbands case it was clear on his scan that he had vascular disease (and dementia) . Not the news anyone would want, but in a way it's better to know what we're dealing with and it makes sense of lots of things.

Same for my dad by the time he had a scan, but for years before the diagnosis he had been... odd, but then he had always had the capacity to be a bit odd.

We were unwittingly playing a game of 'eccentric or dementia' without knowing it and it made it hard to get him diagnosed by the GP until he had to move to a new GP, who was immediately worried.

The old GP thought he was a stubborn old pain in the proverbial, but being a grumpy old man with a vivid imagination and a penchant for conspiracy theories doesn't mean you have dementia.

Unfortunately my dad has shown it is possible to be both, but it took a really long time to get to understanding that.

I suppose one thing to bear in mind that given there's no cure at the moment (and I hope one day there will be) it's not critical or really even possible to 'catch it early' but it is heartbreaking to see it coming in your loved one. If it is dementia they will continue to decline.

 

[Val74]

Hi everyone, am back again. Before I launch in I wanted to thank you again for the support you're showing to a stranger, I'm a firm believer that support from those who know (sadly) through experience are the best people to have around when you've worries like these. I'm sorry too that the fact that you're all here spells out the pain that you've all been and possibly continue to go through, Rosie Apple yours too struck a chord with me due to those very similarities. Thank you all.

Sadly here things have continued to deteriorate, and at a rapid speed. I wanted to ask you all about how you got a diagnosis for your loved ones and/or whether social services were involved. I've read that we should be entitled to a collaborative assessment. So far though there were the two scans (1st over a year or so back, 2nd a month or two back when a concerned GP ordered an emergency same day one); we've had a visit from a Mental Health Nurse, who didn't even say that she was a MH Nurse and I found myself having to ask questions as to her role and what she could/would do to help support; sadly so far that appears to be very little. My auntie has had one call from a doctor they've never met who just dropped dementia into the conversation saying this behaviour is 'common with dementia' and he strongly suspects that's what it is. And we've had medication - a change from one anti-anxiety to another (Sertraline), some sleeping tablets for night time, and now an anti-psychotic medication (Respiridone, which I've read awful things about having worked with people with learning disabilities in the past). It all seems a bit 'hit and miss' to me; I had hoped that there would be more of a co-ordinated response, that there would be a diagnosis prior to medication and that, either way, medication (particularly such potent medication) wouldn't be bandied about so easily.

Am I overreacting? I'm aware that I'm massively upset and concerned about this so have potential to be - but surely a proper assessment/conversation/diagnosis/plan should be in place?

Also, with this medication I've read that the side effects can worsen someone's symptoms and that we're to discuss with GP if symptoms worsen; well they've definitely worsened and that's been shared but the only response has been to just throw more of the same medication at it. My auntie has been keeping a diary but you don't actually need that at the moment to note the change; the sundowning thing made so much sense initially (another thing that was just mentioned as a throwaway comment to them both by the nurse, I know directness is necessary but a bit of sensitivity alongside it wouldn't go amiss) but already now this past week there's no time-frame, it's been all day every day with just pockets of lucidity.

I'm not impressed; just wondering if you guys could share any tips on how to get this addressed in the best possible way? And tips on how we can best support my auntie in managing this too.

Thank you again, and best wishes to you and yours.

Val

 

[imthedaughter]

Hi Val.

Oh dear it's all over the place isn't it.
Firstly everything is different depending on where you are.
For us, yes social services but they did very little to help diagnosis, that's not their role, but they did do the key thing which was referral to memory team. Equally a GP could do that.
I had to push quite a bit to get a diagnosis, but it nay have been happening in the background anyway. Dad took three attempts to get a scan, and once he did it took weeks and weeks to get it read and him officially diagnosed. Then his medication was prescribed by the memory team.
The medication is trial and error, I think, with very few measurable outcomes. We know next to nothing about dementia and as it's seen as an 'old people's disease' I think people almost dismiss it. Early onset dementia seems to elict more sympathetic feelings in the public but research is massively underfunded, meanwhile dementia costs a fortune to manage. Dementia needs a PR team to overhaul its image and get more money.

 

[canary]

Well, @Val74 it sounds like it isnt just you now - the doctors are talking about possible dementia as well. I expect that a referral back to the memory clinic is a likely outcome, but, if not, the GP can refer him back.

As has already been mentioned on this thread, a scan is only one of the things that the doctors will consider when making a diagnosis. The other main thing is the behaviours (the sort of things that you have mentioned) and I am wondering whether the doctor in the memory clinic was actually aware of them. So often the relative/spouse of the person with suspected dementia accompanies them to the memory clinic, but does not like to tell the doctor about their behaviour - often because it feels like they are betraying them - so the doctor doesnt know.

Something I often do before doctors appointments is to write a letter to the doctor well before the appointment and send it in, so the doctor sees the letter before they are called in and I dont have to say anything in front of OH. When your uncle gets another appointment with the memory clinic, make sure that you or your auntie write a letter outlining all your concerns and the behaviour that has been seen and send it off, so that the doctor is aware of what is going on at home.

 

[Val74]

Thank you both for your replies, I really appreciate it.

I've printed off the Compassionate Care listing shared by Grannie G that was linked at the start of this thread as that was really helpful, and distressing to see that we've all been doing so many of the DON'Ts. Am going to share it with everyone involved so that we have a co-ordinated response as a family at least.

It seems such a huge part of our psyche and conversational pattern to reminisce that you do it almost automatically. If anyone has further tips on this I would welcome them.

He did go to the memory clinic a few months back and they were lovely with him there. The outcome, along with the scan, was anxiety and just 'normal age-related' slowing of brain activity. I think there would have been some minimisation going on for sure, but also his symptoms were markedly different at that point too. He was so distressed at going though - the anxiety of 'getting things right' - that he didn't have to go back for a follow up. Do we need to go back there or can support be put in without that?

I just want to make sure that they're getting the best possible support so any advice on how we go about doing that would be so welcome. We're in Wales, where my understanding is that anyone with a need is entitled to an assessment of that need, the assessment should be done in collaboration with the individual (where possible) and family members - this is why I'm surprised and dismayed that it's not happening

 

[imthedaughter]

He did go to the memory clinic a few months back and they were lovely with him there. The outcome, along with the scan, was anxiety and just 'normal age-related' slowing of brain activity. I think there would have been some minimisation going on for sure, but also his symptoms were markedly different at that point too. He was so distressed at going though - the anxiety of 'getting things right' - that he didn't have to go back for a follow up. Do we need to go back there or can support be put in without that?

I agree, things have changed, and you need a reassessment. Can you talk to the GP about this? Or call the memory team you saw before and ask what they can do?
Dementia does seem to cause anxiety - well, if you had a nagging feeling something was wrong but you couldn't put your finger on it, you might be anxious too!

 

[canary]

We're in Wales, where my understanding is that anyone with a need is entitled to an assessment of that need, the assessment should be done in collaboration with the individual (where possible) and family members - this is why I'm surprised and dismayed that it's not happening

Yes, if you are in UK you can get a needs assessment from Social Services, even without a diagnosis, but you do have to request one. Contact Social Services and ask for a needs assessment, although do bare in mind that in this time of covid, things are a bit slow.

It is worth considering what sort of help and support you want from SS. They can offer carers coming in to help with washing/dressing/incontinence/catheters/etc, or prompting or giving medication or prrparing a simple meal (by which they mean a sandwich or ready meal). Some places may offer Meals on Wheels (or equivalent). They can also offer day care, but at the moment everywhere is shut although they may be able to place them on a waiting list for when they re-open. Is this the sort of thing that will help your uncle/aunt?

What a needs assessment cannot address is the diagnosis, or any medication to help with behaviour - this has to come from the memory clinic, or the community psychiatric team.

 

[Val74]

Thank you both for your replies, much appreciated.

" Dementia does seem to cause anxiety - well, if you had a nagging feeling something was wrong but you couldn't put your finger on it, you might be anxious too!" Such a simple yet profound and powerful statement I'mthedaughter, thank you.

Canary, listening to what you've said there I don't think SS would be the right route, at present at least and know too that most day services are closed due to coronavirus. Sounds like it's definitely the memory clinic we would need; community psychiatric team I imagine would be the MH team the nurse has come from.

I will speak to my auntie about how to contact the memory clinic and hopefully will be able to discuss medication with them too. Having read up on Respiridone I'm concerned about it, plus don't like how my uncle is under its influence, either way it certainly isn't helping with all the confusion etc. anyway so not sure being drugged to the point where you can't speak is the answer...

Thanks again both...

 

[MartinWL]

Hi everyone, thank you for your replies, I appreciate it. I will look into the other links that have been suggested, thank you for that. I don't know whether it's reassuring or more worrying that nobody has yet voiced that they've known someone without dementia to suffer similar symptoms (i.e. wanting to go home/not recognising someone) with 'just' anxiety (I use inverted commas as I know how pervading anxiety can be and am not minimising it).

I read last night about 'sundowning' (thank you for mentioning it here canary) and it concerned me further; my uncle is generally ok (although not always) morning to mid-afternoon but my auntie says that he generally starts to become increasingly confused from around 4pm onwards.

I have suggested to my auntie about keeping a log/diary but as it's mostly just them alone I don't know if she will, purely because of the time factor and how tired she is already becoming. I've also told my auntie to check if they tested his thyroid and B12 levels (they tested for water infection at hospital last week) just to rule things out really.

Can I ask if anybody's loved ones had dementia incorrectly ruled out by scans?

Thank you again for your welcomes and support, it's very much appreciated.

If it look like an elephant, smells like an elephant, and sounds like an elephant, then very probably, it is an elephant. In other words it would seem likely that dementia is afflicting him, so perhaps you will be able to get a doctor to give a formal diagnosis?

 

[Val74]

If it look like an elephant, smells like an elephant, and sounds like an elephant, then very probably, it is an elephant. In other words it would seem likely that dementia is afflicting him, so perhaps you will be able to get a doctor to give a formal diagnosis?

Thanks MartinWL, not sure diagnosis will be so straightforward where we are, approach to 'support' is lacking in many areas so far, in my opinion at least.