Worried my Mum might have early dementia

[Parfrey40]

Hi all. I have been increasingly concerned about my mum (late 70s) over the last few months. She has always been very organised, a great cook, lots of hobbies including tennis and languages. She has become generally quite emotionally sensitive/ anxious, is very repetitive with conversation- telling the same story twice or three times in the same day, not following or remembering plans where before she was very on point with these things, not following conversation well and giving ‘stock phrases’ type replies which imply she’s not following the gist or mood of conversation at all . She also seems to have no desire to return to any of her previous hobbies since the lifting of lock down. She is a great cook and has started buying ready meals which is v unusual for her. I wondered originally if it was a mood issue and she completely denies it when I talk to her ‘oh, I’ve only felt like this for a few days’, ‘I’ll feel more like myself soon’ and refuses to go and see her GP. She also won’t go and get her hearing tested, there always seems to be a reason that she has far too much ‘going on’ (she doesn’t). To be honest I feel quite sad about it all. Can anyone relate to this at all?

I'm so sorry that this is happening to your mum.

My step-mother was like this...used to be a very good cook, always cooked their chinese food rather than buy from the takeaway. The first real thing she noticed was that she could no longer juggle the different dishes so that the food arrived together and on time. She started buying chinese ready meals from the supermarket.

Little things started happening, like forgetting to turn off taps, leaving doors unlocked. Repetitive retelling of the same stories - mostly from her past and generally less able to do things.

She also refused to see the GP, just saying she was forgetful and would be back to herself before too long. My dad, for whatever reason, didn't insist on taking her for an assessment, just complained about her slowly eroding abilities.

She was finally diagnosed with dementia after a fall where she broke her hip. She was in hospital for a month or so, then into a care home to convalesce.

I hope it turns out to be something else OP - UTIs can cause confusion, for example. The most difficult thing is getting them to the doctor...I fully believe that there still wouldn't be a diagnosis for my step-mum had she not fallen.

Sorry you are going through this. I went through this with my mother. She lives abroad, and on my return, relatives kept telling me my mum would repeat stories to them, forget things and was generally not herself.

Luckily, my mum gladly went to the GP, because if something could be done, she was happy to get help. In your case, could you make an appointment with her GP, and just take her on the day. She might be upset, but you are concerned for her health.

Mums GP (abroad) did various tests including a blood test for syphilis, urine test for UTI, and other tests to rule out organic other causes. I'm unsure of the process in the UK, but mum then had an appointment with consultant. To my great surprised, her tests all came back normal, her memory was actually in keeping with someone her age and they ruled out dementia! They advised her to do 1 thing at a time. For example, she'd be on the phone chatting to relatives, whilst watching TV, cooking or knitting at the same time- hence the stories would be repeated. The consultant said that if someone called, to turn to TV off and concentrate just on the call, rather than trying to multi task.

There are many other causes for memory problems which the GP should rule out firstly. Is there anyone else your mum trusts? A friend or relative who could speak to her about their concerns, offer to go with her to the GP etc? You might find more info in the following links to help

www.ageuk.org.uk/

www.dementiauk.org/

www.alzheimers.org.uk/

Could you call your DM's GP and explain what's going on and ask them to invite her in for a "Health Check"? This can often be a way of getting them assessed.

Could you make the appointment for her hearing check and offer to pick her up and take her?

I'm not sure if you've had a chat with her yet, but it would be really useful if you could apply for health & financial POAs now before a diagnosis. I can't tell you how incredibly useful they are are you probably won't be able to apply if she is diagnosed with Dementia.

The Elderly Parents Board on MN is very support if you ever want to check it out

Unfortunately the only way to get her there will be if she decides for herself, or if you persist in telling her you are worried about her. The GP would want to rule out a UTI/nutrition/bloods anyway before referring her to a memory clinic so you could take that tack.

I can’t say when my time comes that I will be rushing to get a diagnosis of dementia.

In the meantime, not subtle but useful, have you considered a discussion about POA? In her late 70s it would be a very sensible thing to do anyway.

So sorry you are facing this.

My mum started mid 70s with struggling to find words and no longer managing the cryptic crossword. She was previously so articulate but the doctors would not have it that this was of any concern.

She and we were fobbed off for years that everything (serving raw salmon, making tea without boiling the kettle, forgetting appointments or the way to friends' houses) was a completely normal part of aging. We could see from her sister and her friends that it wasn't. Heartbreakingly, so could she.

By the time she got a dementia diagnosis, it was far too late for any chance of medication slowing decline in any meaningful way.

I would say to trust your guts and push, push, push. This is not normal for her. Medication may have no effect, but it does help some people - but it can't if the doctors won't prescribe it.

It is such a sad and horrid disease.

Sorry you are having to worry about this. With my Mil it started with similar behaviour. She was constantly re telling old stories, lost the ability to cook, her hearing was getting worse but she was in denial ( I firmly believe this can contribute to dementia because of the social isolation it brings), and she started to struggle to contribute meaningfully to conversations.

It took 3 years from those first symptoms to get a diagnosis, by which time she had seriously deteriorated. Partly due to Fil's denial, and partly due to their terrible Gp who didn't make the right referrals.

Hopefully your mum might have something less serious, maybe anxiety or depression? Either way she needs to see her GP.

She's not doollally yet, so I would respectfully say to her " Mum, I've noticed you're having some memory lapses and I'm sure you're aware of it too. . Please lets get a n assessment done by GP; if there 's a problem with early dementia then early treatment can help ". She might respond better to very open discussion.

If she doesn't,
I would contact her GP (by letter) with your concerns about dementia and ask if they could summon her to " a routine annual check up appointment."

I agree with other PPs, best to get mum to see GP

Lockdown has been isolating and had huge impact on people. For some it has hastened dementia onset. Depression can also cause forgetfulness and fog. Vitamin and other deficiencies (found in blood tests) can also impact memory as can uti, constipation and other acute health problems that are easier to fix

Just to point out, dementia is only diagnosed once short term memory loss gets to a clinical level- people can have early memory loss for some years that family notice.

Hopefully if she sees GP , they'll be able to screen

Don't force her or ask gp to do a dementia diagnosis. She may not want to know.
My parents are struggling with memory but have made the decision they do not want a diagnosis.

Sadly I think it might be dementia.

I had similar with my mum. The first sign was her repeating the same questions, which she never did before. My parents moved house not long after these issues became obvious and it was clear on the day that something was very wrong. My parents are very elderly, but have moved multiple times. This time she was unengaged, angry and her short term memory was non existant. The stress of the move meant that she couldn't hide the probelms she was having. She had a proper diagnosis a couple of years ago.

It's really not too bad at the moment and we can still hold a conversation and she knows who we are. We had to get my mum assessed by the gp on the sly really as she won't admit there's a problem. From some of her reactions I think she knows what's wrong really, but talking about it causes rage and upset. This far along it's probably not worth it for us.

I wish you and your mum well op and hope you can find a way through.

@Pileonsally

Don't force her or ask gp to do a dementia diagnosis. She may not want to know. My parents are struggling with memory but have made the decision they do not want a diagnosis.

My mum is on medication for her dementia. Wouldn't that be a good reason to go to the gp?

Don't force her or ask gp to do a dementia diagnosis. She may not want to know.
My parents are struggling with memory but have made the decision they do not want a diagnosis.

Have they given you a POA? You might be in for a rough ride as things progress unfortunately. Having a diagnosis can help you to gain access to some services and they could be taking medication to slow the progress.

my mums been the same recently, very repetitive and quite sudden change too however her blood tests have just come back and showed her thyroid medication clearly needed to be changed

Could you call your DM's GP and explain what's going on and ask them to invite her in for a "Health Check"?

They won’t do it. You can’t “refer” someone else for a GP appointment, they have to go themselves. The best you can hope for is to express concerns generally about her health and persuade her to go to see her GP with you in attendance, OP.

It’s entirely possible that she has concerns herself and is very frightened. As someone who lives in fear of dementia, I constantly monitor myself yet know that confirmation is the last thing I’d want. Particularly as there’s realistically so little that can be done about it.

They won’t do it. You can’t “refer” someone else for a GP appointment, they have to go themselves. The best you can hope for is to express concerns generally about her health and persuade her to go to see her GP with you in attendance, OP

Well our GPs will and have done it.

Ours won’t. I’ve tried and been put firmly back in my box.

Ours won’t. I’ve tried and been put firmly back in my box.

That's such a shame. Unfortunately though most people only seem to get diagnosed after some sort of crisis.

Does the medication slow things significantly?

My mum was 76 when we noticed things weren't right, subtle things like not wanting to meet her friends for coffee, worrying about money. She used to look after my daughter while I worked and I came home and she said she didn't think the front door key was working even though she had got in!! . If I look back now I can see it was the start of her dementia and lots of other things too. The doctor initially diagnosed her with anxiety disorder. Then my sister got seriously ill and my mum didn't seem that worried even though they were very close. My sister sadly died and this accelerated the dementia. After a time in hospital when she was taken there after being found in the street wondering around at night and many tests. She was finally diagnosed with mixed dementia (vascular and Alzheimer's). So sorry if it's the case for your mum, it's an awful disease.

My sympathies OP. The bad news is that there isn't really any good news and you could be in for a long hard fight.

I would definitely write to or email you mum's GP. They may not do anything immediately but they will put it on file and will do some extra tests next time she visits them of her own accord.

Keep the letter short and with bullet points of your observations.

I am very sorry, we are going through this at the moment with MIL and I'm quite horrified at how little we are in a position to do. She can get in her car and drive, she went out the other week with a very flat tyre and was very rude to a woman who pointed this out to her. She is a danger to herself and others

I know we have to protect people from scheming relatives but it makes it incredibly hard for caring relatives to do what's best.

@BunnyRuddington

They won’t do it. You can’t “refer” someone else for a GP appointment, they have to go themselves. The best you can hope for is to express concerns generally about her health and persuade her to go to see her GP with you in attendance, OP

Well our GPs will and have done it.

My mum's doctor did it too. My brother talked to them and they arranged to give my mum a "check up". She was then diagnosed with dementia and given some medication.

Dementia isn't - or at least isn't exclusively- about memory though. My DM retained a good memory whilst making increasingly uncharacteristic decisions and behaving oddly. As an intelligent woman, she also learned the questions in the mini mental state examination and revised the answers before visiting her GP.

I feel for you OP it's a horrible situation and I fear you may need to be persistent. I found the Alzheimer's society support a great help, mainly because they listened and believed me, when HCP were telling me everything was fine. It might be worth keeping a note or diary to remind yourself what is concerning you, but ultimately trust yourself. If you are seeing a change, it's because it's there.