Dementia - does my mum need a medical diagnosis?

[Doughnut100]

I’m certain my mum has dementia. She is fiercely independent and works for herself as a teacher in her late 70s. I need to talk to her about it, I’ve been working up to it for a while. I arranged for my dad to get lasting power of attorney for both of them, so at least the legal stuff is sorted. The rest of my family including my dad are fairly useless so it’s all on me although I don’t live close.

I suspect my mum will resist admitting anything is wrong, she’ll say it’s normal old age. My question is: why is a medical diagnosis helpful? If I’m trying to convince my mum to go to the gp she will need convincing why it’s necessary. The drugs can’t really help yet can they? She probably wouldn’t take them anyway, she’s a hippy. I’m thinking the only real reason to get an assessment is to rule out a brain tumour which might be operable. It’s definitely too bad to be a UTI or one of the other random causes of memory loss.

Obviously I need to keep her from harming herself or anyone else, but until it comes to going into a home (where she would agree to go only when hell freezes over), surely the dr doesn’t need to be involved in that logistical safety stuff?

Are there people out there who decide not to get an assessment even though they know they or their loved ones have dementia?

Yes because she can then get access to medication that can help and slow the dementia's progress.

Definitely needs an assessment/diagnosis. Once it advances there is a lot of help out there. Currently going though this on our family.

They will look for and rule out other things such as vitamin deficiencies, side effects of other medications, Parkinson’s. And yes will probably do a scan

using the PoA could be dependant on a certificate of loss of capacity from a doctor

@Beachhutnut does the medicine actually slow the progress or just affect symptoms? The new stuff that they haven’t rolled out yet still only slows things by a few months at best. It won’t be accessible in time to help her and even then I don’t know if a few months is worth it. She won’t want to take medicine she’s a full blown hippy.

I think it's a good idea to get the diagnosis, yes, but my Mum got so distressed at the idea of the appointment that I dropped it.

There is some medication; there are some doors that open with the diagnosis. I personally don't think there's enough value in the diagnosis to force the issue, but it's becoming increasingly useful over time.

The fact is that the diagnosis will probably be made at some point - it was for my mum, but beyond the point where she could understand it.

@PermanentTemporary yes I guess that’s the decision- to have the diagnosis before she loves the capacity to understand it, or after. As someone mentioned I would need it to use the PoA. But is it worth the stress and distress of doing it while she understands. I don’t know.

*loses

I’m in a similar position with my mum and feel that it’s not worth getting a diagnosis yet. She would be devastated and terrified.

I hate to say it but if you believe she has dementiA, then start looking at power of attorney when she is still able/cognition is still there. It gets so difficult as they progress and legally you may need to eventually be in charge of her finance and health. I'm sorry, it's never pleasant and they will refuse to believe it. A medical diagnosis is also good/legal when dealing with companies.
My uncle signed up for things during early onset and was taken advantage off, but we were protected as we'd informed all companies (tv internet phone etc) that all dealings/communications should not go through him but through the designated family member. So they refunded back money that had been debited out.

I'm truly sorry OP. It's just a horrible condition to deal with but I hope she continues well and does not deteriorate. The drugs do slow it down but from my experience not by that much.

I was fairly sure my mum had dementia but her gp was appalling. I used to visit my mum 3 or 4 times a week and every time she seemed worse than the last. I started a diary of everything she said/ did that gave me cause for concern. I put this with a formal complaint and eventually managed to get a diagnosis and almost more importantly medication. The medication obviously could not restore her memory but it almost instantly slowed down the progression. I truly feel that had she got the medication 18 months earlier when I first contacted her gp she would have been able to retain an independent life for longer

Medication (which can help a lot), rule out other diagnoses, open the door to end of life decisions.

So the medication really can help by some accounts? In that case I will buck up my ideas and stop putting this difficult talk off.

It seems to be affecting my mum physically more than mentally at the moment. So having the diagnosis has meant being able to get a blue badge for the car which has made an incredible difference to their lives. It also is helping her understand she needs to keep active physically and mentally along the lines of the adage ‘use it or lose it’ . But if she is already active and the physical symptoms aren’t there (mobility).

@Doughnut100 I am no expert but when my Dad was diagnosed recently we were told his medication would delay the progress of the dementia....not sure how effective it will be but it gives hope. It does come with side effects though and has impacted his appetite quite significantly.

I have to say, the Alz.drugs really didn’t help my DM - they just brought back the ‘nasty’ stage, which we’d thought had passed. So we stopped them. She had Alz. for around 15 years in total anyway - went on to 97.

TBH, having seen too much of late stage dementia, I’ve come to wonder what is the point of slowing it down. It’s such a cruel disease, so IMO if you’re going to get it, the sooner it’s over, the better. When I hear of anyone who’s had the ‘galloping’ type, I think they’re the ‘lucky’ ones. Who on earth wants several years of advanced dementia, like my poor DM - a pitiful shell of your former self, doubly incontinent, no clue about anything, not knowing any of your family? As I said, it’s cruel - a fate far worse IMO than death.

I found the drugs did little for my mum who was diagnosed with alzheimer's and vascular dementia She had it two years before she passed away doubly incontinent unable to walk swallow or speak. In my mind it was a blessing she only had it two years. Truly awful disease

Financial help is available with a diagnosis through various benefits

you’ll be able to reduce the council tax bill by 25% with a firm from c/tax which might be helpful

getting external help organised so everything doesn’t fall yon your dad

A diagnosis means she will be entitled to benefits like attendance allowance which crucially isn’t means tested and will be able to get her council tax reduced. It will also mean she can access some of the local support groups which will keep her active and occupied and be a great respite resource for you and your Dad. Giving her as much time to accept the diagnosis as possible will make it easier for her to understand what is happening as the disease develops. As for medication it slows the progression but also can be great at managing terrible symptoms like paranoia and anxiety, which without medication could result in an early admission to hospital/psychiatric unit. It’s hard work to get someone in front of a doctor and get diagnosed but it’s ultimately easier to prepare when you know, it’s hard enough already not knowing how long it will last and how long you will be doing this.

None of these are good enough reasons to get a diagnosis if your mum doesn't want one. Medication is of very limited usefulness and with significant side effects. Things like attendance allowance are not dependent on a diagnosis. Power of attorney can be invoked with no diagnosis.

Both my parents were diagnosed with dementia. From the initial GP chat with a few questions to test memory to getting the diagnosis took months. In both cases within a few days of being told they had dementia they had forgotten they had been told it.

But they then got the medication and other benefits/ discounts others have mentioned. I said the medication was to help keep their brain nice and strong and prevent memory loss. Like a vitamin.

I would see it not as choosing whether or not get a diagnosis but deciding when to get a diagnosis. Because, unless she has a sudden life ending medical even or terminal disease, at some point you are going to need to get a diagnosis so she can get the correct care.

In our case it has been really finely balanced. My dad was diagnosed with mild Alzheimer's about a year ago, and because of his age and late onset (he's mid-80s) they think the progression will probably be slow. He was pretty devastated by the diagnosis and has basically refused to accept it - like your mum he's very independent, very clever, has always lived by the power of his brain. Being told he has an incurable brain disease has been awful for him.

He's taking two kinds of medication but there's been no noticeable change. (It could be preventing quicker deterioration of course, we don't know.) as yet, thankfully, he is mostly independent and doesn't need any official 'care' (home helps etc). We already had POA sorted. I would 100% recommend anyone reading this to get that in place for your older relative sooner rather than later - you can get it set up when your relative is hale and hearty and not use it for years. I'm very glad I haven't had to negotiate all of that while dad has been upset and confused.

The major thing for us was that the DVLA instantly withdrew his driving licence after his first set of cognitive tests. If your parent drives and you're worried about how safe she is, the diagnosis makes that a lot easier.

It's one of those situations where it's impossible to know in advance how useful the diagnosis will be, versus how upsetting/frightening it will be for your parent. The efficacy of the medication varies a lot from person to person. I remember having your quandary last year, and a year later I'm not sure I can 100% say the diagnosis was worth it. The driving probably tips it into the 'worth it' category for me, because dad would never have given up his licence voluntarily and he was becoming significantly unsafe (in my opinion). But it has had a major impact on his sense of self.