Does this sound like early onset dementia?

[Mortimermay]

My mother is in her early 60's. She has had medical issues for most of her life and has spent decades on various strong medications. She has also experienced stress and anxiety for many years. There has been a huge deterioration in her memory over the last year or so and we can't get either her or her GP to take it seriously. They either write it off as her usual stress/anxiety or mess around with her medication (which makes no difference).

To give you some examples: She will repeat the same story within the same phone call almost every time you speak to her, she will become distracted mid-story, start talking about something else and then if you prompt her to finish the original story she will have no clue what you are talking about. She misplaces things all the time. She is hopeless with dates and cannot remember when anything is planned,even with it written down, because she won't look at what she's written down because she has decided it's happening on a different date. She forgets conversations or things that have just happened and then becomes really angry if you remind her that we've just spoken about it. She continually forgets to take her medication even with my father prompting her, alarms on her phone and them being laid out in a box for her.

Her social anxiety has become really extreme to the point where it is a huge deal for her to leave the house for anything. She will leave for set things that she has always done but she cannot cope with a change in routine. So for example she hardly ever visits our house now, we have to go to her, and if we need a babysitter for our children she will just send my dad on his own because she really can't be bothered with it.

Apart from the forgetfulness, conversation is also difficult because she can't follow the thread of a conversation, it's as if she's off in her own world and will just randomly say things that have no relevance to anything else that's been said. She also doesn't really try to engage with anyone. During meals she may just get up from the table and wander off to the other room without saying anything, if you go to visit she may just sit in another room as if she doesn't even care that you're there and she is constantly obsessively scrolling on her phone for no real reason because she's not engaging with anything on there either. She just comes across as pretty vacant most of the time.

She is continually buying pointless items of clothing that she never wears because she rarely leaves the house and is obsessed with redecorating. She has also on occasion forgotten how to use every day items like the washing machine and she forgets to hang up the phone at the end of a conversation sometimes.

She's always had a temper but she becomes angry really quickly particularly if you mention anything related to her memory and she can be really paranoid. She became convinced that one of her grandchildren was using her credit card to buy things, when she had used it herself and she often appears to make up stories in her own head that she then becomes really anxious and stressed about. For example, something might happen with a neighbour and she will decide that this means x, y and z will happen and it will be awful and then she becomes stressed. When there's no reason for her to think that any of those things will happen.

She's been for a memory test with the GP and passed everything except one of the questions. They put all of the issues we mentioned down to stress including an incident where she had been in the car (as a passenger)dropping a friend off but when I called to chat to her she couldn't tell me why she was in the car. She no longer drives herself because she couldn't maintain concentration and was just completely distracted and off in her own world when driving. After a near miss with grandchildren in the car she recognised herself that she was no longer safe to drive.

We all just feel as though as there's more going on but don't know what else to do. Does this sound like dementia to you?

Sadly it does sound really familiar. My DF died in 2022 and was diagnosed in early 2021. He had moved in with us in autumn 2020. Not remembering to put the phone down and forgetting skills he’d had for decades wet a big sign; but the vacant looks and not following conversations had been going on for much longer than any of us had admitted to ourselves - my DM included.

it’s so easy to pantomime along with the same conversations repeating with a close relative and not click that they are just parroting phrases they’ve always said.

i’d call age concern or Alzheimer’s society for advice and keep prodding the GP

I’m sorry you’re dealing with this, it sounds very difficult. I’m in my late 50s, so not much younger than your mum, and it certainly sounds very concerning to me, having dealt with both my DF and DFIL developing dementia. This is very abnormal behaviour for someone of her age, as you realise. Perhaps it could be linked to her other illnesses or medication, or perhaps she is developing new cognitive issues, but I certainly think you need to pursue this. My DF had a similar period where we knew there was something wrong (he was hallucinating or describing false memories of bizarre things that couldn’t possibly have happened) but the medical professionals weren’t convinced. After a while, as things got worse, there was no doubt and he ended up in residential care. He was much older, but your mum is young enough that this is strikingly odd behaviour. There must be a medical cause of some kind. It might help to write down your concerns to show medical professionals? I wish you well with this.

It does sound like some kind of dementia. My Sister-in-law is the same. She's 69 and was diagnosed 3 years ago (eventually) as having Alzheimer's. The first signs we had was that she was forgetting things, times, dates, conversations, etc., but we thought it was just age-related at first. She then started to say that my texts were going to her via her daughter's mobile. She also started accusing my brother (her husband) of stealing her money, bank cards, jewellery - which were all found later, in unusual places (bank card was in the airing cupboard) and she said he'd changed all her passwords on her laptop (he hadn't - she'd forgotten them).

Please INSIST on your mum being referred for a brain MRI (my SIL had to wair 10 months, that was before all the Covid business)

Hi, yes it does sound like dementia. Going through this with my MiL at the moment although she didn’t pass the preliminary memory test from the GP so it was pretty clear that she had significant deterioration with her cognitive ability. My MiL ‘loses’ things constantly, is convinced people are getting in the house and stealing from her and then the items ‘miraculously’ appear. She forgets conversations, repeats the same questions and stories over and over, struggles with basic tasks, can’t manage her medications and is socially isolated because she finds interactions difficult (can’t follow, or contribute to discussions) She constantly moves things around the house, unplugs things like the TV and phone and then can’t figure out why they don’t work…. She also gets very cross when we mention her memory issues.

We made an appointment with the GP, with a list of the issues and after the memory test MiL was put on the waiting list for the dementia clinic. They are so overwhelmed at the moment the list is long and we’ve only just got an appointment for her after a year on the list. She has deteriorated significantly in that time 🙁I can only recommend taking a full list of issues and examples back to the GP and asking what can be causing the cognitive problems you mention, as stress can’t possibly be the cause of all the things you mention - the short term memory problems alone are a big red flag for dementia. Have you also read the information on the Dementia Uk website? www.dementiauk.org

Thank you @Catgotyourbrain and @WhiteArsenic I think I will try the Alzheimers society to see if they have any advice.
It is very concerning behaviour for someone her age, which is why it's so frustrating that the GP doesn't seem to see it as a concern. We suspect that they aren't taking it seriously due to her age, as she is too young for any cognitive decline to be the first thing they'd think of to follow up. The memory test was frustrating because we had hoped that my dad would attend with her but he didn't. He acknowledges there is an issue but I think doesn't want to upset her by pushing for him to attend appointments. I suspect that when she mentioned it to the GP (because she knew we would ask about it) she probably emphasised she had been under a lot of stress (when strictly speaking she hasn't, if that makes sense).

She also tends to blame my dad for a lot of things. So she will constantly complain that he doesn't do enough around the house (endless DIY and decorating projects that she devises) and that he's always in a bad mood and this stresses her out. Sometimes he is. I think he finds it very difficult at times. But I've been there when he's in a perfectly good mood and she's having a go at him for being in a mood as usual, when actually she is the one who has turned the mood of the room because she's flown off the handle about something. She also complains about the stress of childcare for her grandchildren but she doesn't actually have any real childcare responsibilities these days. It's as if she is remembering how much child care she has previously provided and hasn't recognised that that was years ago.

So I suspect that she's telling the GP that she has a lot to deal with and they obviously aren't hearing our side of it to explain that what she believes isn't strictly true.

Thanks @WhatDoYouWantNow and @TiredyMcTired. I'll have a look at the dementia uk website too. Your stories do all sound very familiar.
I think a list is a good idea. We need to get together and come up with a good list and one of us will have to go with her rather than my dad. An MRI might be a good thing to request because even if they are still insisting it's her medication then surely she should have an MRI to see if there's been any changes due to the prolonged length of time she has been on medication.
The social isolation sounds familiar. It hadn't occurred to me until you mentioned it there but she hasn't worked for many years due to her health issues but she always had a stream of visitors at the house. That doesn't happen anywhere near as often now. She did initially blame my dad for this because he's retired now and she claimed that no one visited her as often because he was there. Part of that might be true, they're aware she isn't on her own all day now. But I do wonder if the visits dried up because she can't hold a conversation any more and they were aware of that.

I would keep a record of all these examples that you are concerned about and then email or send a letter to the GP quoting these and ask them to call her in for a medication review or a well women check. Ask them not to mention you have contacted them.

Depression can also cause the symptoms you mentioned.

I feel for you @Mortimermay I've gone through much of the same with my mum who is a bit older at 80, but lots of it sounds the same. She has only this week had a diagnosis for dementia, Alzheimer's. It has taken over 2 years to get the diagnosis and those times can be pretty bad. She had a CT scan a year ago and because of one thing and another (covid and cancellations mainly) we did not see the consultant until 9 months after, and he said the scan was "normalish" - I think they have to do this to rule out other things rather than just plain dementia. Typical for us was at first: constant repeating, and obsessing over a small thing. Phoning us (me and my sister) constantly, maybe 5-10 times in a run to discuss the same thing. Lack of desire to do anything. Complaining about things. Completely self centered, expecting to be waited on, forgetting all social niceties, easily bitter (and she wasn't like this in her earlier days). Confusion about doing simple things "makes noises about doing them but does not do them". Getting majorly stressed about any appointments. Anxious and worried about everything (phones, appointments seem particular triggers). Refusing to wash or move really (so we have rashes and so on). She also presents extremely well in front of any medical staff or carers, so this delays diagnosis and help. "your mum's doing marvellous" We are now in full Alzheimer's mode, and she "sort of knows" but I don't think that will last much longer. I'm sorry to say that it has been dreadful, I go round every day as I am nearby and cook her (and my Dad's) dinner, clean and sort nearly every aspect of their lives. I've applied for Lasting Power of Attorney (very important) but so far the medical people have been fine with me not having it, and have accepted that I am there for my Mum. There is a good medical professional that I trust, (because you are passed from pillar to post on this stuff) who has done us well, doing home visits "seeing through the charade" and upping her medication, but it isn't easy to find the right person. In my case, my mum has been accepting of all of this as she is a bit older and really trusts me, but it is still so hard. I wish you love and luck through it all, pm me if you think I can help xxx

It really does. Please do what @TiredyMcTired advises, make a list of the behaviours, pull no punches, take it to her GP and start pushing. It took YEARS for my late mum’s dementia to be diagnosed, by then she was in hospital and in a dreadful state. Her decline was just terrible. Her GP had brushed off extremely clear symptoms for years. That little memory test they do is not very helpful, but even though she didn’t do very well in it he wasn’t too bothered. Like @sjpkgp1 ’s mum she presented pretty well to the GP and other people. We tipped him off about her odd behaviour, anger, delusions, paranoia, not washing or brushing teeth, not getting dressed, not eating meals, not taking her medication etc. At the visit she told him quite convincingly how well she was doing, 3 meals a day, having showers, brushing her teeth after every meal. It was all 100% untrue and he took it all at face value.

I really feel for you, this is just awful. I hope you get the help that she and you need as soon as possible.

@PrincessofWellies She's been treated for depression for years now on various antidepressants that would also help anxiety. I think the depression diagnosis is masking some of the other things though. I constantly remind myself that i have colleagues who are older than her and she reminds me of someone in their 80s rather than their 60s. I think they continue to see it as part of her depression but there's been such a huge deterioration that it feels so different to what has gone before.
@sjpkgp1 yes, I didn't want to say it because it sounds horrible but she's become so self centred that it's really difficult to deal with her sometimes. The only other person she cares about is one grandchild, she's almost fixated with them. Has to know where they are and what they're doing at all times and will be asking people to go and check on them even when they're just in the other room playing with their cousins. It's quite bizarre at times. It's as if she's in a real panic if she doesn't have eyes on them all the time. She will message about them when they're at their own home. Shes not like this with the other grandchildren, in fact shes often quite indifferent to them. Its just odd behaviour thats hard to explain to anyone.

Just to add another explanation... I am early 40s and seriously thought I had early on set dementia as I was doing all these things. It ended up being critically low vitamin B12 levels and was fixed with injections. Apparently B12 checks are the first step in any dementia diagnosis as it is often a deficiency that causes illness that mimics dementia

@IsItaCowIsItaPlane I need to ask about that. I know she's had blood tests for various things and my dad has regular B12 injections but my mum doesn't. I'm not sure if that's because she was tested and she was fine or if she's never been tested for it. Its hard to keep track of her appointments and state of health because she does have lots of physical health issues and my dad isn't great at keeping us informed about what's happening either. I'll ask them about it though.

Go back to the doctor, write a letter detailing every set of symptoms, copy in local social services and mental health team, if they still refuse to reference her to a memory clinic ask for a second opinion. My DM has been diagnosed with Alzheimer’s in her early symptoms, sadly you don’t have to be 80, it does happen and the sooner you can get a diagnosis the sooner you can get some help. Doctors really should not be putting off referrals like this when earlier diagnosis can mean a chance of getting onto medication sooner and slowing the progression of symptoms.

Hi did you find out what is wrong? My father is presenting similar symptoms