When does forgetfulness become dementia?

[NetZeroZealot]

I've just spent a couple of weeks staying with my dear 88 year old Dad.

I'm really concerned about his memory, which has really deteriorated over the past year or so, and spending a lot of time together with just the 2 of us (Mum was away) has highlighted this.

For example - reads the Times every day but doesn't know the name of the PM. ("that little Indian man")
Gets very confused about time of day and even the month and year.
Sometimes forgets if he's had a meal.
Can't remember some grandchildren's names.
Repeatedly asks same question, e.g. what time is something happening.
Can't remember basic words/names like names of supermarkets, some types of food ...

BUT - very capable of lucid and interesting conversation and appears fully mentally engaged most of the time.

I'm not sure what I should do.

Even people who need help but do not get any (because they live alone) will qualify.

Diagnosis is helpful financially. If he needs support you might be able to get attendance allowance for him ( even if your mum is doing the support) once you have attendance allowance, if he is diagnosed with dementia, a clinician can decide it counts as severe mental impairment and you can apply for a reduction in council tax.

Getting AA can also mean he'll be entitled to pension credit, housing benefit and council tax reduction.

We are in the process of doing this.

It's so stressful
To us all

I’d agree with not pushing it. If the person really can’t remember, it’s just bashing your head against a brick wall and will achieve nothing except frustration/upset.

One thing I forgot to say re FiL in the early stages. Because we were then utterly clueless about dementia, we didn’t pick up on it.

FiL was staying with us since we were all going to a BiL’s very smart wedding. Just as we were about to leave in taxis, all dressed up - FiL was in a dinner jacket - he said, ‘Where are we going again?’

We did think it very odd, but didn’t really give it another thought until other signs appeared later.

That was my dad’s diagnosis. On the basis of the short test only

For a relative, I noticed what could at first be a blip or memory loss - but there were too many of them happening, and I realised that something more fundamental was wrong. Examples such as -

Getting lost in a journey and then unable to follow directions given over the phone.

Handing over an envelope as a gift (whcih should have contained a celebration card / cheque) without realising the envelope was in fact empty. The card etc had been left on the kitchen counter.

Ordering pudding in a restaurant, when the waiter turned up with it 5 - 10 mins later, saying- "what's this, who ordered this ?"

@NetZeroZealot remember all the little amendments to his life that he may have made to cope, and describe the need that gave rise to those. Does he make notes for things most people would remember easily? Would he take medicines if nobody reminded him? “A need that is met is still a need”

You apply for AA by describing all the needs. This is done just as easily without a dementia diagnosis. So if life is being impacted, people shouldn’t be deterred from applying for AA because they don’t have a diagnosis.

The first two are means tested, aren’t they?

Attendance Allowance is not means tested.

FWIW FIL has a diagnosis of Alzheimer’s - he can’t remember his home address, can’t remember where we are going for more than 5 minutes, couldn’t be trusted for 5 mins on the computer. But he can still beat all of us hands down at cards.

Cognitive decline can come in many forms. My father lacks capacity, he lives in a parallel universe dated about 1950, and has an idiosyncratic understanding of time. But the other week I told him I was going to check my car was locked, and when I returned 10mins later, he greeted me with “and was it locked?”.

Sorry, i meant the first two of the things that AA was being given as opening doors to, ie pension credit and housing benefit. Even if you’re getting AA you won’t get those unless you’re on a low ncome.

Yes, which is why I said "can mean" not "will mean".

Maybe I should've said "might mean"?

That's what I meant but didn't make it clear!

My mother in law forgot how to swim. That was right at the beginning of her having vascular dementia.

Ah didn’t mean to reply to you that was very much a stand alone post!!

I can see there’s some confusion around the MCI/dementia distinction. I hope I can explain a bit more.

Technically, a diagnosis of dementia means:

1. A qualifying score on a cognitive screen (so less than 82/100 on the ACE III or less than 24/30 on the MMSE, for example).
2. A brain scan showing changes consistent with dementia.
3. Ongoing and prolonged difficulties completing daily tasks of living
4. All other reasons for cognitive decline have been ruled out, such as infection.

If someone has been diagnosed with MCI then that means that either their score is too high (usually someone with MCI will score around 85-90/100 on the ACE III, depending on their education/functioning level before the difficulties started), their score is low enough but there’s nothing on the brain scan yet, or their score and brain scan are indicative of dementia but they’re managing day to day still.

Sometimes a diagnosis of dementia will be refused if there are significant physical health problems going on ( for example, a stroke can cause high level of impairment immediately afterwards but this may improve over time) or a blood test is indicative of ongoing infection that hasn’t been resolved. Normally these cases would be reviewed at a later date once their physical health is more stable.

I hope this helps a bit.

I remember taking my mother for a memory test. She kept looking at me for the answers until I said ‘Mum, it’s no use me answering them!’.

For my dad it started with repeating stories and slowly he'd forget words or forget mid sentence what he was saying.
With names he's just started to call my husband of 20+ years the name of my ex who I was only with a year as a teen.
He always remembers to go out to feed the birds and then he'll forget his breakfast or pills.

Dreams have become confusing to him as sometimes he'll dream something and think it happened or he'll nap and wake up thinking it's morning. I'd definitely see a gp dad had a brain scan and they said early Alzheimer's.

OP, WRT to the benefits of diagnosis, once my Mum was diagnosed with Alzheimer’s she was on Mementine which definitely helped. She also became increasingly anxious once dementia set in, and tried some form AD / mood lifting drug, but didn’t get on with it.

We also acquired a dementia friendly clock with a clear display that can be set to say the name of the day and ‘morning’ afternoon’ etc.

It affects everyone differently. My Mum never forgot who we were or where she was, never became incontinent, and had an opinion on art, music etc until they day she died. But she could not remember the steps involved in making a cup of tea , couldn’t write, and forgot how to use cutlery.

Fingers crossed for your Dad.

Thank you all for your responses, they are very helpful.

Does anyone know if the memory test is done at the GPs or if it requires a visit to a specialist clinic or hospital?

Info on benefits is also very useful. He won't qualify for anything that is means-tested, but they both worry a lot about money so it all helps.

This. Soon, if you don’t already have one.

@NetZeroZealot An initial memory test is done at the GPs. This is usually the 6 CIT www.mindwell-leeds.org.uk/wp-content/uploads/2021/03/6CIT.pdf If the score implies that something is going on, then the GP will refer to your local memory clinic who will undertake more thorough memory tests. Our local clinic currently has a wait of 6-8 weeks.

That's interesting @JennieTheZebra . DM scored I think 17/30 on the MMSE and is starting to struggle with quite a lot of things in her life (managing money, cooking a meal, word finding etc), but they gave her a diagnosis of MCI amd didn't recommend a brain scan. I was really surprised. To be fair, she's still pretty lucid quite a bit of the time(though extremely repetitive), but I think the reason she's managing so well is that my dad is picking up so much of the slack. On one hand a diagnosis wouldn't change anything, but I do wonder whether dementia drugs might help her.